iht2 health it summit in denver 2012 – presentation "health information exchange: medical...
TRANSCRIPT
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Jonathan Gold MD MHA MSc Regional Chief Medical Informatics Officer Catholic Health Initiatives drjgoldyahoocom iHT2 Health IT Summit 7252012
Health Information Exchange Medical Research Rethought
Conflict of Interest Disclosure
Jonathan Gold MD
Has no real or apparent conflicts of interest to this presentation
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Who is Antoine de Saint-Exupery
If you want to build a ship dont drum up people to collect wood and dont assign them tasks and work but rather teach them to long for the endless immensity of the sea Antoine de Saint-Exupery
Abstract Health information exchange shared access patientsrsquo medical data
HIE secondary use of data Query across multiple HIE databases Matching multiple characteristics enables patient-specific decision support Customized patient care Medical decisions tailored to individual
Medical research will transition from searching studies focused on limited number of patient attributes to patient-specific research
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Janet Roseburg 86 yo female Arthritis (acute exacerbation) Diabetes Congestive Heart Failure Hypertension
Compare two similar anti-
inf lammatory treatmentsmdash Drug A vs Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
As doctors after we diagnose how do we decide what to do
Need to consider the patientrsquos background
Need information about risks vs benefits Medical education
Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Medical Research and Literature ldquoGold Standardrdquo
Peer reviewed Placebo controlled Double blind Statistically significant
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Statistically Significant
Large enough test and control groups have been used to indicate that the result is unlikely to have occurred by chance
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Conflict of Interest Disclosure
Jonathan Gold MD
Has no real or apparent conflicts of interest to this presentation
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Who is Antoine de Saint-Exupery
If you want to build a ship dont drum up people to collect wood and dont assign them tasks and work but rather teach them to long for the endless immensity of the sea Antoine de Saint-Exupery
Abstract Health information exchange shared access patientsrsquo medical data
HIE secondary use of data Query across multiple HIE databases Matching multiple characteristics enables patient-specific decision support Customized patient care Medical decisions tailored to individual
Medical research will transition from searching studies focused on limited number of patient attributes to patient-specific research
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Janet Roseburg 86 yo female Arthritis (acute exacerbation) Diabetes Congestive Heart Failure Hypertension
Compare two similar anti-
inf lammatory treatmentsmdash Drug A vs Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
As doctors after we diagnose how do we decide what to do
Need to consider the patientrsquos background
Need information about risks vs benefits Medical education
Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Medical Research and Literature ldquoGold Standardrdquo
Peer reviewed Placebo controlled Double blind Statistically significant
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Statistically Significant
Large enough test and control groups have been used to indicate that the result is unlikely to have occurred by chance
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Who is Antoine de Saint-Exupery
If you want to build a ship dont drum up people to collect wood and dont assign them tasks and work but rather teach them to long for the endless immensity of the sea Antoine de Saint-Exupery
Abstract Health information exchange shared access patientsrsquo medical data
HIE secondary use of data Query across multiple HIE databases Matching multiple characteristics enables patient-specific decision support Customized patient care Medical decisions tailored to individual
Medical research will transition from searching studies focused on limited number of patient attributes to patient-specific research
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Janet Roseburg 86 yo female Arthritis (acute exacerbation) Diabetes Congestive Heart Failure Hypertension
Compare two similar anti-
inf lammatory treatmentsmdash Drug A vs Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
As doctors after we diagnose how do we decide what to do
Need to consider the patientrsquos background
Need information about risks vs benefits Medical education
Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Medical Research and Literature ldquoGold Standardrdquo
Peer reviewed Placebo controlled Double blind Statistically significant
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Statistically Significant
Large enough test and control groups have been used to indicate that the result is unlikely to have occurred by chance
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
If you want to build a ship dont drum up people to collect wood and dont assign them tasks and work but rather teach them to long for the endless immensity of the sea Antoine de Saint-Exupery
Abstract Health information exchange shared access patientsrsquo medical data
HIE secondary use of data Query across multiple HIE databases Matching multiple characteristics enables patient-specific decision support Customized patient care Medical decisions tailored to individual
Medical research will transition from searching studies focused on limited number of patient attributes to patient-specific research
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Janet Roseburg 86 yo female Arthritis (acute exacerbation) Diabetes Congestive Heart Failure Hypertension
Compare two similar anti-
inf lammatory treatmentsmdash Drug A vs Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
As doctors after we diagnose how do we decide what to do
Need to consider the patientrsquos background
Need information about risks vs benefits Medical education
Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Medical Research and Literature ldquoGold Standardrdquo
Peer reviewed Placebo controlled Double blind Statistically significant
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Statistically Significant
Large enough test and control groups have been used to indicate that the result is unlikely to have occurred by chance
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Abstract Health information exchange shared access patientsrsquo medical data
HIE secondary use of data Query across multiple HIE databases Matching multiple characteristics enables patient-specific decision support Customized patient care Medical decisions tailored to individual
Medical research will transition from searching studies focused on limited number of patient attributes to patient-specific research
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Janet Roseburg 86 yo female Arthritis (acute exacerbation) Diabetes Congestive Heart Failure Hypertension
Compare two similar anti-
inf lammatory treatmentsmdash Drug A vs Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
As doctors after we diagnose how do we decide what to do
Need to consider the patientrsquos background
Need information about risks vs benefits Medical education
Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Medical Research and Literature ldquoGold Standardrdquo
Peer reviewed Placebo controlled Double blind Statistically significant
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Statistically Significant
Large enough test and control groups have been used to indicate that the result is unlikely to have occurred by chance
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Janet Roseburg 86 yo female Arthritis (acute exacerbation) Diabetes Congestive Heart Failure Hypertension
Compare two similar anti-
inf lammatory treatmentsmdash Drug A vs Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
As doctors after we diagnose how do we decide what to do
Need to consider the patientrsquos background
Need information about risks vs benefits Medical education
Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Medical Research and Literature ldquoGold Standardrdquo
Peer reviewed Placebo controlled Double blind Statistically significant
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Statistically Significant
Large enough test and control groups have been used to indicate that the result is unlikely to have occurred by chance
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
As doctors after we diagnose how do we decide what to do
Need to consider the patientrsquos background
Need information about risks vs benefits Medical education
Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Medical Research and Literature ldquoGold Standardrdquo
Peer reviewed Placebo controlled Double blind Statistically significant
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Statistically Significant
Large enough test and control groups have been used to indicate that the result is unlikely to have occurred by chance
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Medical Research and Literature ldquoGold Standardrdquo
Peer reviewed Placebo controlled Double blind Statistically significant
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Statistically Significant
Large enough test and control groups have been used to indicate that the result is unlikely to have occurred by chance
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Statistically Significant
Large enough test and control groups have been used to indicate that the result is unlikely to have occurred by chance
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Define specific focus of study one factor or small set Compensate for ldquoconfounding factorsrdquo
Concurrent diseases Other medications Socioeconomics
Medical literature Clinical Trials
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
________________ ________________ ______________
Do ldquoconfoundersrdquo matter
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Does statistical significance translate into guidance for the treatment of Mrs Roseburg
Many factors affect how a patient progresses after receiving treatment
Does this lead to rational clinical decision making Does that research provide the optimal means for tailoring
treatment to that patient
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Yes
(Invariably hellip) No
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
PubMed Search Criteria Journal New England Journal of Medicine Dates 112006-12312006 Study Populations Humans All Ages Both Sexes Types of Articles
Clinical Trials Meta-Analysis Randomized Control Trials Case Reports Clinical Trial (Phase 1-4) Comparative Study
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
bull Controlled Clinical Trial bull Evaluation Studies bull Multicenter Study bull Twin Study bull Validation Study
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
NEJM Research ArticlesStudy Population Sizes
112006-12312006
150-49912
500-10007
1-14968
gt100013
1-149150-499500-1000gt1000
Search terms Meta-Analysis Randomized Control Trials Case Reports Clinical Trials (Phase 1-4) Comparative Study Controlled Clinical Trial Evaluation Studies Multicenter Study Tw in Study Validation Study (Research articles marked as mutually exclusive (if more than one category applies--results appear in first type listed)
223
38
24
41
N=326
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
What is unique about Mrs Roseburg
Personal and demographic characteristics Diseases Medications Genetic sequence Socioeconomic background Additional factors
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Choose the appropriate treatment Drug A vs Drug B
Considerations Four chronic diagnoses 12 current medications Renal function Hepatic function Age (and Gender) Weight
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
JRrsquos profile Database of 100000000 unique
patient files 10 key variables from JRrsquos profile found
in 200000 patients 20 key variables from JRrsquos profile
found in 1000 patients 20 variables and Drug A = 400
patients 20 variables and Drug B = 100 patients
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
JRrsquos profile + Query Drug A + Screening Battery
Drug A has an increased risk of stroke within two years
in 07 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Drug B has an increased risk of stroke within two years in 002 of cases
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
JRrsquos profile + Query Drug B + Screening Battery
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
What do you recommend
If Drug A is chosen to treat Janet Roseburg (rather than Drug B) there will be a 35 times higher risk for her to have a stroke within two years than if she is treated with Drug B
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Secondary Use of Aggregated Data With a larger pool of potential participants smaller
studies might be less important
Real world experience may validate or temper findings from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
The Wunderlich Project
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
httpfadenhorgwunderlichdefaultaspx accessed 732012
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Points to Remember Wunderlich
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Background 13 year old girl Systemic Lupus
Erythematosus (SLE) Nephrotic range proteinuria Antiphospholipid
Antibodies Pancreatitis
Increased risk of thrombosis
Treat with anticoagulants
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
As doctors how do we decide Need to consider the patientrsquos
background Need more information about
risks vs benefits
Historical database of patient records
Medical education Personal experience Peers Medical literature
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Results
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
What did the local historical data teach them
Overall 98 pediatric patients with lupus 10 of them developed thrombosis
15x Relative risk of thrombosis with lupus and persistent proteinuria versus lupus without proteinuria
12x Relative risk of thrombosis with lupus and pancreatitis versus lupus without pancreatitis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
What did they do
Results
4 hours to search local database
Treated with anticoagulation within 24 hours after admission
No thrombosis
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Frankovich J Longhurst CA Sutherland SM Evidence-based medicine in the EMR era N Engl J Med 2011 Nov 10365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Points to Remember Evidence-Based Medicine in the EMR Era
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Used local database with large number of cases Investigated effects of multiple factors Shared with clinicians Supported clinical decision making at point of care
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Health Information Mandates 2004 Office for National Coordinator for Health
Information Technology 2009 American Recovery and Reinvestment Act
Health Information Technology for Economic and Clinical Health (HITECH) Act
2011 Accountable Care Organization guidelines (DHHS)
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Health Information Exchanges Large healthcare organizations Regions States Digital standardized health data in network servers Nationwide Health Information Network (NwHIN)
Allow providers to communicate patient data securely May serve as conduit between HIEs Allow providers to access patient records Permit patients to access personal health records
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Brave New World Secondary Use Enablers Electronic records in outpatient and acute care settings Huge detailed patient databases Standard medical terminologies Temporospatial descriptors Highly capable search engines
Google Bing Watson
High speed communications (Internet) infrastructure
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
In Search of Mrs Roseburg Query enormous health information database
Search engine magic
Find doppelgangers
Compare real world experience of very similar patients
Validate temper interpretation of results from tightly controlled double blind studies
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Focused Inquiry Challenges
Cyber security patient information de-identification
Patients opt in to share data
Access to deceased patient data
Constructing accurate patient profile and specific question
Sort clinical data in temporospatial context
Rapid search to be clinically useful
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Addressing Challenges Privacy secured by using positive negative query statistics
Results only shared if positive responses greater than pre-defined mandated limit (eg if nlt50 no result shared)
Protect de-identification of patients by not allowing query to be overly specific
Constructing effectual query requires physician to identify right question and convey a reasonable summary How specific summary can be will depend on information clinician
hopes to glean
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
Mrs Roseburg Revisited Mrs Roseburg the former school teacher will
always want me to present information to her that is as accurate as possible and explain why I have prescribed Drug B rather than Drug A for her rheumatoid arthritis (Her neighbor received Drug A from me two months ago and has done well using it)
The shift in how we search for guidance when
making treatment and other recommendations to our patients from focusing on published medical research about a very limited set of attributes which my patient has in common with participants in a study to tailoring a query around a robust description about that patient shall lead us to a wholly new understanding of how unique we each are
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
George Bernard Shaw
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-
References Wunderlich Project httpfadenhorgwunderlichdefaultaspx
accessed 732012 Frankovich J Longhurst CA Sutherland SM Evidence-based
medicine in the EMR era N Engl J Med 2011 Nov 10 365(19)1758-9 Epub 2011 Nov 2 httpwwwnejmorgdoifull101056NEJMp1108726 accessed 732012
Gold JD Ball MJ The Health Record Banking Imperative A conceptual model IBM Systems Journal Vol 46 No 1 43-55 2007 httpwwwaccessmyhealthorgdocumentsHRB20Conceptual20Modelpdf accessed 732012
Gold JD Medical Researcher Meet Mrs Roseburg JHIM Forthcoming 2012
This document contains unpublished confidential and proprietary information No disclosure or use of these materials may be made without the express written consent of Jonathan Gold
- Health Information ExchangeMedical Research Rethought
- Conflict of Interest Disclosure
- Who is Antoine de Saint-Exupery
- Slide Number 4
- Abstract
- Slide Number 6
- Janet Roseburg
- As doctors after we diagnose how do we decide what to do
- Medical Research and LiteratureldquoGold Standardrdquo
- Statistically Significant
- Medical literature Clinical Trials
- Does statistical significance translate into guidance for the treatment of Mrs Roseburg
- ldquoShow me the medical literature and I will deciderdquo
- PubMed Search Criteria
- Slide Number 15
- What is unique about Mrs Roseburg
- Choose the appropriate treatmentDrug A vs Drug B
- An Exercise in Mock Data
- JRrsquos profile
- JRrsquos profile + Query Drug A + Screening Battery
- JRrsquos profile + Query Drug B + Screening Battery
- What do you recommend
- Secondary Use of Aggregated Data
- Slide Number 24
- Two Exercises in Real Data
- The Wunderlich Project
- Slide Number 27
- Slide Number 28
- Slide Number 29
- Slide Number 30
- Slide Number 31
- Points to RememberWunderlich
- Slide Number 33
- Background
- As doctors how do we decide
- Results
- What did the local historical data teach them
- Slide Number 38
- Points to Remember Evidence-Based Medicine in the EMR Era
- Slide Number 40
- Health Information Mandates
- Health Information Exchanges
- Brave New WorldSecondary Use Enablers
- Slide Number 44
- In Search of Mrs Roseburg
- Focused Inquiry Challenges
- Addressing Challenges
- Mrs Roseburg Revisited
- ldquoSome look at things that are and ask why I dream of things that never were and ask why notrdquo
- References
-