# scimp2013. data wizards frank sullivan frse, frcp, frcgp gp nethergate health centre, dundee...
TRANSCRIPT
# SCIMP2013
Data Wizards
Frank SullivanFRSE, FRCP, FRCGP
GP Nethergate Health Centre, Dundee
NHSTayside Prof of R&D in GP &1y care Director Health Informatics Centre, University of Dundee
Privacy Advisory Committee Member
Director2
Scotland has world-leading opportunities for eHealth Record Research
Clinical records 1983
Prendergast v Sam and Dee Ltd
High Court 1983
Clinical records 2013
At the Health eResearch Centre launch on 1st May
Minister for Universities and Science David Willetts said:
“Thanks to the NHS and the UK’s world-leading research base, we are uniquely positioned to use patient data to study disease and develop better treatments. The e-health centres are the first of their kind and have the potential to revolutionise health research. They will provide a vital insight into conditions affecting millions of people and ultimately bring benefits for patients.”
A&E
BIRTH
DEATH
Neonatal Record SMR11
Child health surveillance
Immunisation
GP consultations
Dental SMR13
Outpatients SMR00 Hospital Admissions SMR01
Mental Health
SMR04
Prescribing Screening
Community care
SMR50
Cancer registrations SMR06
Cancer Registry
Scotland has excellent, linkable databases
Laboratory
Maternity
The next half hour
• New data for old– Benefits to patients– SHIP/SPIRE/SHARE– The Farr institute– TRANSFoRm/EHR4CR
• Why should we share data?– Benefits>>>Effort – Secure and confidential– Data quality– Recompense
Benefits to patients
• Established– ECS– Priority Amend– Diabetes– WOSCOPS
• Emergent– Multimorbidity– Polypharmacy– ECLS
Scottish Emergency Care Summary 2005-6
• Out of Hours and A/E initially• Provides
– Current drugs– Adverse Drug reactions
• Information campaign – leaflets– 2.5M households
• 174 (0.003%) patients opted out
Priority Amend
Raschkes B MSc
P atients with hidden or mis -prioritis ed diag nos es by R E AD C ode c hapter
0%
10%
20%
30%
40%
50%
60%
70%
80%
A Infectious diseases &
Parasitic
Diseases
B- N
eoplasms
C- E
ndocrine, Nutritional M
etabolic &Im
munity D
isorders
D- D
isorders of Blood &
Blood F
orming
Organs
E- M
ental Disorders
F- N
ervous System
& S
ense Organ
Diseases
G- C
irculatory System
Disease
H- R
espiratory System
Disease
J- Digestive S
ystem D
isease
K- G
enito-urinary System
Disease
L- Com
plications of Pregnancy, C
hildbirth&
Puerperium
M- S
kin & C
ubcutaneous Tissue D
isease
N- M
usculoskeletal & C
onnective Tissue
Diseases
P- C
ongential Anom
alies
Q- P
erinatal Conditions
R- S
ymptons, S
igns & Ill- D
efinedC
onditions
S- Injury &
Poisoning
T- C
auses of Injury & P
oisoning
U- E
xternal Causes of M
orbidity &M
ortality
Z- U
nspecified Conditions
7- Operations, P
rocedures & S
ites
TO
TAL
% M
iscl
assi
fied
DARTSDARTSSCI-DCSCI-DCNETWORKNETWORK
Reducing amputation rates
Diabetic MedicineVolume 26, Issue 8, pages 773-777, 30 MAY 2009 DOI: 10.1111/j.1464-5491.2009.02770.xhttp://onlinelibrary.wiley.com/doi/10.1111/j.1464-5491.2009.02770.x/full#f1
per 1000 patients with diabetes.adjusted for age and sex.
Total
Major
Predicting progressive retinopathy: T1DM
R0M0 at last exam R1M0 then R0M0 at last exam
Red = women, Blue = MenFilled = 1 year screens, Open = 2 year screens
•If all people with T1DM and 2 previous screens showing R0M0 in 2008 switched to 2 yearly screens 40% reduction in number of screening exams done in 2009•What is an acceptable level of interval disease?
Policy level implications of changing strategy
Trial £20M 15 year follow-up £20K
Image showing the management of Bell's palsy in the UK according to treatment.
Morales D R Sullivan F et al. BMJ Open 2013;3:e003121
©2013 by British Medical Journal Publishing Group
2004 Cochrane SRs SBPS
Image showing the trends in referral to secondary care for Bell's palsy in the UK from 2001 to 2012.
Morales D R et al. BMJ Open 2013;3:e003121
©2013 by British Medical Journal Publishing Group
Population-based study using PCCIU data
1.75M people in Scotland42.2% one or more long-term
condition.
“Management of patients with several chronic diseases
is now the most important task facing health services in developed countries, which
presents a fundamental challenge to the single-
disease focus that pervades medicine”
Lancet May 15th 2012
Significant association with Deprivation
Remote Queries on GP records
GP-POLY £1.7M HTA General practitioner led medication review of older people with polypharmacy :
a large, cluster randomised,
stepped-wedge trial of a complex intervention to incentivise and facilitate medication review in older people with multimorbidity.
Recruitment using GP records
• Awareness raising
• Practice letters & Calls
• GP computer based reminders
• Public spaces
Identifying patients at practice level n=5 437
3 837
960
640
New data for Old
• SHIP- The Scottish Health Informatics Program (and Farr)
• SPIRE - Scottish Primary Care Information Resource
• SHARE - The Scottish Health Research Register
SHIP Linkage part 1
Local IDsStudy numbers
Local IDsStudy numbers
Indexing Service
Datasource 1
Local IDsNamesAddressesDates of birth
Datasource 2
Local IDsNamesAddressesDates of birth
SHIP Linkage part 2
Study numbersPayload data
Study numbersPayload data
Safe Haven
Study numbersPayloaddataPayloaddata
Datasource 1 Datasource 2
Proportionate governance
BENCHMARKS
(PUBLIC INTEREST, SAFE PEOPLE,
SAFE SYSTEMS, SAFE ENVIRONMENT,
RELATIVE RISKS)
PRIVACY RISK ASSESSMENT
(BASED ON CRITERIA SUCH AS DISCLOSIVENESS,
SENSITIVITY ETC)
CATEGORY 0
PUBLIC DOMAIN - N
O FURTHER CONDITIONS
CATEGORY 1= LOW IMPACT
NO FURTHER REVIEW - STANDARD TERMS
AND CONDITIONS
CATEGORY 2= MEDIUM IMPACT
FAST TRACK REVIEW + STANDARD TERMS AND
CONDITIONS = POSSIBLE FURTHER CONDITIONS
CATEGORY 3= HIGH IMPACT
FULL REVIEW + STANDARD TERMS AND
CONDITIONS = POSSIBLE FURTHER CONDITIONS
STAGE 1 STAGE 2 STAGE 3
The eData, Research and Innovation Service eDRIS Service
Help with study
design
Provide expert advice on coding, terminology, meta
data and study feasibility
Agree deliverables and timelines
Facilitate completion of
required permissions
Liaison with technical
infrastructure (safe havens)
Liaison with data suppliers to secure data
Provide analyses, interpretation and
intelligence about data (where required)
Support projects from start to finish
Build relationship between data suppliers
and customers
Single point of entry for health research
A named Person from start to finish1
2
3
45
6
7
8
Grampian
Tayside
Glasgow
Lothian
NSSNational
eDRIS portal
NRSEast Node
NRSWest Node
NRSSouth East Node
Scottish Morbidity RecordCommunity prescribing
Clinical specialityLaboratoryImagingResearch datasets
National Datasets“Phenotypically-rich” Datasets
Treatment outcomes in stratified populations
Care-integration
Biomarkers
Clinical trialFeasibility
Pharmaco-vigilance
Health Intelligence
Epidemiology
NRSNorth Node
+ + +
Source Systems
Identifiable Information
National Safe Haven – Secure Network
ISDStorage of keys to map pseudo-identifiers to identifiers
An Instance of this exists for each local area
Linking– ATOS
Indexing
eDRIS Add-onResearcher’sChoice
Each Local Safe Havens chooses the software and service they provide as eDRIS Add-On
Local Safe Havens – NHS Network
eDRIS Only – No Local Safe Haven Involvement
Local Data Sets
Regional Subsets of National Health Resources provided to Local Safe HavensProvided only by agreement between local safe haven and their health boards or other relevant data custodian
Local Safe Havens -University Network
Local Linked Data – Project/Pseudo Identifiers
Project Specific National Linked Data – Project Identifiers
Data sets released to local safe haven as per local agreements with relevant governing body
Primary Care
Images SMRSCI-Store
Other Persistent National Data Sets
Project Identifiers One off Projects
Personal Identifiers
Project Identifiers
Project Identifiers and Data
DBs provided by agreement with local health board
API access by local safe havens to these health data sets providing approval and add on service agreed
API access by eDRIS to these health data sets providing governance approval
Pseudo identifiers converted to Project identifiers
SMR
SMR ?
++
+++
Project Identifiers
PersonalIdentifiers
Project Identifiers and Data
+
++ +
+++++
National Safe Haven
Researcher Interface
Persistent National Health DatasetsHistorical Information StoredLinkable using Pseudo Identifiers
HeRC UK
HeRC - Scotland
HeRC - Wales
HeRC - UCL
HeRC - Manchester
HeRC – St AndrewsHeRC - Glasgow
HeRC - DundeeHeRC - Edinburgh
HeRC - ISDHeRC - Aberdeen
£19M funding for eHealth records researchCall led by MRC Arthritis Research UK, the British Heart Foundation,
Cancer Research UK, the Chief Scientist Office (Scottish Government Health Directorates), the Economic and Social Research Council, the Engineering and Physical Sciences Research Council, the Medical Research Council, the National Institute for Health Research, the National Institute for Social Care and Health Research (Welsh Government) and the Wellcome Trust
DepartmentOf businessInnovation& Skills £20M
Electronic Clincal File
Dual-Source
Routine
Healthcare
Clinical Research
Electronic Health Record
Single-SourceTRANSFoRm
Diabetes use case: In 5 countries link phenotypic data from GP to genomic data
TRANSFoRm
Scottish Primary Care Information Resource (SPIRE)
Planned UsesAt National / NHS Board level:• Informing national policy• QOF / Data for payment purposes• Local ‘whole system’ analysis & planning• Research, including data linkage• Public Health Surveillance• National primary care publications & reports
What is SPIRE?• Objective: To ensure a consistent national approach to
the appropriate and safe use of data extracted from General Practice Clinical IT systems in Scotland.
• Aim: To fill a known gap in national data sources relating to primary care.
• Scope: Develop an extract mechanism to transfer data securely from GP systems to a safe haven in NSS.– Demonstrate robust Information Governance– Maintain a national dataset– Perform bespoke extracts (e.g. approved research)– Provide routine extracts to support e.g. QOF
payments– Provide a National Analysis & Intelligence Service
GP Participation Options• GP practice consent sought prior to any data
extract– Case-by-case basis– Consent may be to recurring data extraction (e.g.
National dataset)– Prior notification– No response = opt out– Right to opt out after opting in (data erasure)– Ability to view content of extracts– Patient opt-out respect even if GP opts in.
Data Linkage• Only if approved by IAG & PAC
• Any linkage required will utilise the NSS Electronic Data Research & Innovation Service (eDRIS)– Separation of patient identifiers and payload data
in linkage process– Production of anonymised data at individual level– In the very rare occasions where patient
identifiable data are needed for research, explicit patient consent will be required
– Provision of safe & secure access for researchers
How can GPs Benefit?• Participation is voluntary; no payment from NSS• Initial thoughts on GP intelligence needs:
– Direct access to information on practice workload, activity & demographics
– Access to comparative information about e.g. referral rates– QOF / drill-down analysis– Risk stratification
• Potential solution options:– Reporting/querying functionality in extract tool– Create/develop bespoke tools e.g. QOF dashboard
• Reduced workload associated with data extraction• Funding for research quality data available from studies
Funding Options
• Improving data quality– Training– Research incentive scheme– £500-6 000 per annum
• Observational research– 0.Xp per patient Y 000s patients
• Interventional research– £Z00 per patient recruited to trials
….would you like your doctor to tell you about research that you would be able to take part in?
If the research would involve…
Allowing a researcher confidential access to your medical records but no other involvement
What is SHARE?
• A register of people aged 16 or over and living in Scotland who have said they are interested in helping with medical research. With permission to link to their NHS Datasets to establish their eligibility for research projects.
• Builds upon Scotland’s excellent informatics– Databases– Record Linkage
Pilot use for Focus group(Typical recruitment<5%)
• 12 adults, male and female required
• 86 invited
• 28 responded– 12 said no
– 16(19%) interested in participating
– 12 attended
Why should we share data?
• Benefits>>>Effort
• Secure and confidential
• Data Quality
• Rewarded
Patient records
Quality improvement
Research
Benefits>>>Effort
GP records
Patient
Better
informed
decisionsNew
knowledge
Local insights
Relevant patient data
Patient data
Grouped analysis
Comparison with targets
Retrieval
High quality careIn a Data Rich Environment
Sullivan and Wyatt , ABC of Health Informatics 2006
Caldicott 2 recommendations
1. Justify the purpose(s)
2. Don’t use personal confidential data unless it is absolutely necessary.
3. Use the minimum necessary personal confidential data.
4. Access to personal confidential data should be on a strict need-to-know basis
5. Everyone with access to personal confidential data should be aware of their responsibilities
6. Comply with the law
7. The duty to share information can be as important as the duty to protect patient confidentiality.
In Summary• Increasing availability of linked and novel
eHealth records is enabling better clinical care and research.
• Methodologies to make use of the data safely have been established in Scotland.
• Limitations need to be acknowledged and addressed.
• eHealth records research is a world-leading opportunity for the Scotland and beyond.
# SCIMP2013
# SCIMP2013