personal health record and web 2.0

E. Santoro - IFHRO 2010, November 18 2010E. Santoro - IFHRO 2010, November 18 2010

Personal Health Record and web 2.0: a new way for patients and citizen to collect, handle, and share their own

health data

Eugenio Santoro [email protected]

Laboratory of Medical InformaticsDepartment of Epidemiology

Istituto di Ricerche Farmacologiche “Mario Negri”

Personal Health Record and web 2.0: a new way for patients and citizen to collect, handle, and share their own

health data

Eugenio Santoro [email protected]

Laboratory of Medical InformaticsDepartment of Epidemiology

Istituto di Ricerche Farmacologiche “Mario Negri”


AHIMA Definition of PHR

"The personal health record (PHR) is an electronic, universally available, lifelong resource of health information needed by individuals to make health decisions.Individuals own and manage the information in the PHR, which comes from the health care provider and the individual. The PHR is maintained in a secure and private environment, with the individual determining the rights of access. The PHR is separate from and does not replace the legal record of the provider.“

AHIMA e-HIM Personal Health Record Work Group. "The Role of the Personal Health Record in the EHR." Journal of AHIMA 76, no.7 (July-August 2005): 64A-D.

http://www.webcitation.org/5Vlj7zE7E


Personal Health Record – Key points

• A PHR is different form an electronic healthrecord (EHR) that is maintained by the healthcare provider/hospital/physician

• PHRs are stored in a private, secure, centralized databases located on web servers

• A PHR is under control of the patient. The owner of the PHR can decide:- Which information are to be collected/uploaded- Who can wiew them- With whom share them (family

members/physicians ..)


Which health data a PHR should include - 1

• Patient demographics (including name and date of birth)

• Emergency contacts (family members, physicians, specialists, dentists)

• Health insurance information• Important events and hereditary conditions

in family history• Opinions of specialists• Important tests results (laboratory,

radiological, etc.)

AHIMAAHIMA


Which health data a PHR should include - 2

• Eye and dental records• Correspondence between the patient and

his health providers• Dates of significant illnesses and surgical

procedures• Current medications and dosages• Discharge summaries• Medicine and allergy lists• Immunization status and dates• Data about life style and habits (e.g.

smoking, weight, height, bmi, etc.)AHIMAAHIMA


PHR - Data collection

• Manually by the owner of the PHR

• Automatically by the owner of the PHR• home glucometer• blood pressure readings• other devices

• Other providers (if an agreement exists)• pharmacies• labs• health care providers• EHR/EMR


Some tools provided by the PHR systems - 1

• Checking for drug interaction as soon as medications are uploaded

• Checking for drug/allergies interaction

• Home monitoring and management of health parameters (e.g. weekly/monthly graph of blood pressure)

• Scheduling of appointments with physicians

• Reminders for health screening programs (diabetes, cancer, etc.)


Some tools provided by the PHR systems - 2

• Medication refill and renewal

• Communications with the physician (secure messaging)

• Community alerts and social networks

• Sharing with family members/physicians

• Links to reliable health information systems for medical education


PHR

© Gunther Eysenbach, CC-BY

Based on: Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ.J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6

Stand alone: the user can enter, modify and

update everything

PHR Systems: Option 1




Tethered: the user can view his health information from

a EHR system


EMR

EMR

Read only

Read+Write/Annotate

PHR

PHR




Integrated: the user can view and enter information into his record

that can be shared or added to his medical record (EHR)


EMR

EMR

PHRDifferent providers

PHR

PHR


Google Health


Microsoft HealthVault


Dossia


UK NHS HealthSpace


Usage of PHR systems - 1

• Consumers with online access to their health information pay more attention to their health

• PHR usage (in US) is low (7%), but doubled in two years.

• PHR users are young (11%), highly educated (12% college graduated)and higher income (13% with >75.000$), frequent Internet users (12%), suffering from 3+ chronic conditions (9%)

CALIFORNIA HEALTHCARE FOUNDATION 2010


Usage of PHR systems - 2

• Less educated, lower-income and chronically ill patients report greater value from using a PHR

• Two out of three Americans are concerned about the privacy of their health information; concern is reduced by experience with and benefits received from a PHR.



Reasons limiting the use of the PHR systems



Advantages – Patient/Consumer• Complete medical history stored in one place

• Centralization of health data

• Access data from anywhere (e.g. while traveling)

• Access data in case of emergency (by himself or by ER physicians)

• Automatic notification of scheduled activities (medical visits, drug administration/assumption)

• Home care monitoring and self-management of own health conditions

• Improving of the doctor-patients communication


Promises/Drivers of PHR2. Preventing Medical Errors

“The single most important way you can help to prevent errors is to be an active member of your health care team. That means taking part in every decision about your health care. Research shows that patients who are more involved with their care tend to get better results.“(AHRQ)

PHRs can help to engage patients in their care.


Advantages – Physician/Hospital

• Access to patients complete medical history

• Checking of drug interactions

• Limitation of medical errors

• Reduction of the cost of care (avoid duplication of examinations or prescription of drug already taken by the patient) in patients suffering from chronic diseases

• Identification of patients at risk


Promises/Drivers of PHR1. Public health, prevention,

behavior change• PHRs as an entry point for

behavior change programs (e.g. smoking cessation, obesity)

• PHRs as an entry point for customized health recommendations

• PHRs can be used as surveillance tools

Evaluation of Influenza Prevention in the Workplace Using a Personally Controlled

Health Record: Randomized Controlled TrialFlorence T Bourgeois, William Simons, Karen

Olson, John Brownstein, Kenneth MandlJ Med Internet Res 2008 (Mar 14); 10(1):e5


Advantages – Reseacrh

• PHRs may be a particularly valuable to study relationships between health behaviour and outcomes

• PHR could be used to selection possible candidates to be included in clinical trials based on their health conditions (consent for this secondary data use should be obtained by the patient)


Disdvantages

• Data may be uncompleted, inaccurate, difficult to verify, in particular when they are collected by the patient

• High heterogeneity among the PHRs systems -low interoperability between PHRs and

PHRs/EHRs systems

• (patient’s perceived feeling of) scarce security and privacy about his/her health data

- Patients express concerns that the data could be accessed by unauthorized people


Characteristics of PHR 2.0

“PHR 2.0” have “Web 2.0” design features that enable / facilitate participation, collaboration, and openess- Model social relationships between individuals- Open standards- Acknowledge consumers as “prosumers”- Ability for consumers to share parts of their health

records with anybody


EMR

EMR PHR

PHR

PHR

Different providers

PHR 2.0

Other peoples’ PHR




Community


Patientslikeme


Conclusions

• PHR’s are a fundamental means of providing value driven healthcare

• Adoption rates are low but it is expected they rise in the next years

• To obtain more advantages PHR systems must be completely interoperable in order to allow sharing of data between them and between EHR systems

• PHR 2.0 could add further advantages


Thank youEugenio [email protected]/eugeniosantorohttp://eugeniosantoro.wordpress.comhttp://www.youtube.com/eugeniosantorohttp://www.slideshare.net/eugeniosantoro

Santoro E. “web 2.0 e medicina”. Roma 2009,Il Pensiero Scientifico editore

personal health record and web 2.0

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