Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH Associate Professor Department of Health Policy, Management and Evaluation, University of Toronto; Senior Scientist, Centre for Global eHealth Innovation, Division of Medical Decision Making and Health Care Research; Toronto General Research Institute of the UHN, Toronto General Hospital, Canada Visiting Professor, Faculty of Behavioural Sciences University of Twente, The Netherlands Track Keynote Presentation: From Patient Needs to Personal Health Applications
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Eysenbach: Personal Health Applications and Personal Health Records
Keynote talk at the AMIA Spring Conference in the PHR track (Personal Health Records), focussing on international develoments and a new paradigm which I call PHR 2.0
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Gunther Eysenbach MD MPH
Gunther Eysenbach MD MPH
Associate Professor Department of Health Policy, Management and Evaluation, University of Toronto;
Senior Scientist, Centre for Global eHealth Innovation,Division of Medical Decision Making and Health Care Research; Toronto General Research Institute of the UHN, Toronto General Hospital, Canada
Visiting Professor,Faculty of Behavioural SciencesUniversity of Twente, The Netherlands
Track Keynote Presentation: From Patient Needs to
Personal Health Applications
Talk Outline
– An international perspective on the importance of PHR/PHA development & research
– Patient needs (and other drivers of PHR)– Emerging technological trends
• PHR 2.0 – impact of Web 2.0 approaches on our field
www.jmir.org
A shameless plug for the #2 ranked health informatics journal…
Journal of Medical Internet Research (JMIR) [www.jmir.org]
• Now in its 10th publishing year• Independently published • #2/20 ranked journal in medical informatics by ISI journal impact
factor (2.9), #6/57 in health services research• Approx 50.000 readers per month, 20.000 TOC alert subscribers• Open Access (HTML freely accessible), no subscription
necessary to read articles, first OA journal in this field• Article Processing Fee for submitting authors from non-member
institutions• Individual and institutional memberships for value-added services
(PDFs) and article processing fee (APF) waivers• Focus on Internet/web-applications and consumer health
informatics incl. PHRs / Personal Health Applications
Is your department/unit already an institutional member?
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
PHRs – Markle Definition“"The Personal Health Record (PHR) is an
Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it. PHRs offer an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results, and information from their pharmacies and insurance companies. (…) People can use their PHR as a communications hub: to send email to doctors, transfer information to specialists, receive test results and access online self-help tools. "
Markle Foundation (http://www.markle.org/downloadable_assets/final_phwg_report1.pdf http://www.webcitation.org/5Vmpga1nD )
Personal Health Applications• Personal Health Applications (PHA) are tools and
services in medical informatics which utilizes information technologies to aid individuals to create their own personal health information.Personal Health Applications are claimed to be the next generation consumer-centric information system that helps improve health care delivery, self-management and wellness by providing clear and complete information, which increases understanding, competence and awareness. Personal Health Application is now part of the Medicine 2.0 movement.
URL:http://en.wikipedia.org/wiki/Personal_Health_Application. Accessed: 2008-05-29. (Archived by WebCite® at http://www.webcitation.org/5YB9yJgp2)
PHA Platforms
• Google Health• Microsoft Healthvault• Dossia• RWJF Project HealthDesign (?)• Tolven (?)
PHR / PHA Platform
Personal Health Application A(e.g. Web-based behavior change program)
Personal Health Application B(e.g. Web-based behavior change program)
EMR
Medical/ Home care devices
Consumer electronics
Personal Health Records / Personal Health Applications
Domotics
A “global” scan on the state of PHRs internationally
Pubmed search for "personal health record" OR "personal health records" OR "personally controlled health record“
N=142 hits (incl 12 reviews)• 3 from the Netherlands• 2 Australia• 2 Germany• 2 Norway• 1 Canada• 1 Finland• 1 UK• 1 FR• 3 from Belgium (EU)
… the rest from the US !
“Gelbes Untersuchungsheft” – (paper-PHR, Germany)
National Program for IT in the NHS
Paper-based personal health record (Canada)
Ontario:SIMS Partnership Patient Portal
Source: Matt Anderson, CIO SIMS Partnership
Urowitz et al. Is Canada ready for patient accessible electronic health records? A National Scan. BMC Medical Informatics and Decision Making (forthcoming)
Canadian Committee for Patient Accessible Electronic Health Records (CCPAEHR)
The Netherlands have more to offer than tulips and
windmills…
Source: Prof Jan Kremerhttp://www.webcitation.org/5XwJY3Wkg http://www.epddag.nl/2007/ppt2007/0pres-j.kremer.pdf
• Create a Health Equalities Commission
• Create a national preventative health agency (akin to “VicHealth”)
• Set-up a regional health partnership (akin to an “ASEAN” model)
• Ensure evidence-based allocation of resources
• Make healthy food choices easy
• Complete rethink of the shape of the health workforce
• Promote better translation of Australia’s research efforts into commercial and health outcomes
• Create a “Healthbook” web-based personal health record (like a Facebook)
http://www.webcitation.org/5YB3bqeB9
Traditional hospital-basedhealth care system
Obesity
Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16
The importance of behavioral factors and preventive medicine
• More than one third of cancer deaths are attributable to nine modifiable risk factors
• The 9 factors are: 1) smoking, 2) high body mass index, 3) low fruit and vegetable intake, 4) physical inactivity, 5) alcohol use, 6) unsafe sex, 7) urban air pollution, 8) indoor use of solid fuels, and 9) injections from healthcare settings contaminated with hepatitis B or C virus.
• 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 Trial Florence T Bourgeois, William Simons, Karen Olson, John Brownstein, Kenneth Mandl J Med Internet Res 2008 (Mar 14); 10(1):e5
Promises/Drivers of PHR (2)2. 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.
Promises/Drivers of PHR (3)3. Increasing compliance (adherence) and improving outcomes
Data ↑ Knowledge ↑Self-efficacy ↑Patient-doctor communication ↑Behavior Change ↑
Eysenbach, 2008
→
contextualize
Promises/Drivers of PHR (4)4. Aging population, rise in chronic conditions are major cost drivers
=> PHRs facilitate home care, self-management, informal caregiving
Romanov Comission Interim Report, 2002
• focussing on preventative health care and health promotion, to help keep Australians healthy and out of hospital
Promises/Drivers of PHR (5)5. Research• PHRs may be a particularly valuable to study relationships between health behaviour and outcomes• Obtaining consent (opt-in) for secondary data use requires patient access to their personal health
information
6. PHR foster adoption of EHR• PHRs highlight interoperability problems• Entering of major players into the market (Google, Microsoft) will facilitate adoption of standards• PHRs will result in consumer demand / pressure on the government and health care providers which may in turn foster EHR
adoption
But what drives / motivates consumers + patients?
• Desire to maintain and achieve health• Desire to “organize” their health information• (sometimes) mistrust in the medical system• Desire for autonomy
Healthy Acute Condition Chronic/Severe Condition
Motivation
Adler KGWeb Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online ServicesJ Med Internet Res 2006;8(4):e26<URL: http://www.jmir.org/2006/4/e26/>
Patient motivation is often limited (and short-lived) => Attrition
Eysenbach GThe Law of AttritionJ Med Internet Res 2005;7(1):e11<URL: http://www.jmir.org/2005/1/e11/>
RCT
open
Essential: Needs assessment and usability testing (iterative & ongoing)
• Focus Groups
• Usability lab
• In-depth interviews with stakeholders
Gaps between patient and provider needs / expectations
• Expectations of Patients and Physicians Regarding Patient-Accessible Medical Records Stephen E Ross, MD, Jamie Todd, MS-IV, Laurie A Moore, MPH, Brenda L Beaty, MSPH, Loretta Wittevrongel, Chen-Tan Lin, MD J Med Internet Res 2005 (May 24); 7(2):e13
– “Patients are particularly likely to anticipate that shared records will be empowering (...). Physicians, by contrast, are especially likely to anticipate that laboratory results will confuse patients and that shared records will make patients worry more. “
Gaps between patient and provider needs / expectations
Credits: Selina Brudnicki & Claudette DeLenardo
Gaps between patient and provider needs / expectations
Credits: Selina Brudnicki & Claudette DeLenardo
People will not enter health information to a significant degree…
…(perhaps there are some exceptions)…
…rather, the PHR (or PHA platform) must be populated seamlessly and effortlessly…
Web 2.0(collaborative, data entered by others)
Mobile technologies, SMS
Domotics,Ambient, pervasive computing,Intelligent car
Applications withgeospatial awareness
Electronic Medical Record (Provider)
PHR / PHA Platform
Natural speech interfaces
Personal Monitoring Tools
Sorbi MJ, Mak SB, Houtveen JH, Kleiboer AM, van Doornen LJPMobile Web-Based Monitoring and Coaching: Feasibility in Chronic MigraineJ Med Internet Res 2007;9(5):e38<URL: http://www.jmir.org/2007/5/e38/>
Intelligent spoon
“Since it can be such a hassle to make phone calls every day just to check the status of a remote parent with nothing else to talk about, a system that monitors the life pattern of those parents in a casual manner was invented in response to the needs of family members living apart.”
“I wouldn't want to track (a variable or in general) because tracking would… “
• Not apply to me: (eg, smoking, alcohol drinking, pets) • Not provide new information: (ie, “I already know this”)• Not provide valuable information• Provide too much information (information overload)• Threaten self-image (“would feel criticized”)• Not provide actionable information• Lead to social conflict• Promote obsessive or unhealthy reactions: (“becoming obsessed”) • Force too much structure (“Approaching life too analytically”)• Not be suitable for particular activity or behavior• Be too complicated, error-prone, or disruptive
Beaudin JS, Intille SS, Morris METo Track or Not to Track: User Reactions to Concepts in Longitudinal Health MonitoringJ Med Internet Res 2006;8(4):e29<URL: http://www.jmir.org/2006/4/e29/>
From: Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ.J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6
PHR 2.0
(credits: Pablo Rivero)
“the doctor is not an expert in the experience of illness, but in the
identification of it“
. Davidson KP, Pennebaker JW. Virtual narratives: Illness representations in on-line support groups. In: Petrie KJ, Weinman JA, editors. Perceptions of Health and Illness.
Amsterdam: Harwood Academic Publishers; 1997. p. 463-86
Apomediation defined• “disintermediation” through digital technologies = bypassing the
gatekeeper, role of “human” intermediaries diminishes or changes
• consumers and patients are finding new ways to locate relevant and credible information.
• The agents that replace intermediaries in the digital media context may be called “apomediaries,” – Intermediaries mediate by standing “in between” (inter-) consumers and
the services or information they seek, – Apomediaries “stand by” (apo-) and provide added value from the
outside, steering consumers to relevant and high-quality information without being a requirement to obtain the information or service in the first place (Eysenbach, 2007).
– While the traditional intermediary is the “expert,” apomediaries consist of a broader networked community including peers, experts, parents, teachers, and the like, who are networked in a digital environment, or networked tools (“Web 2.0”).
Eysenbach, http://hdl.handle.net/1807/9906
KnowledgeSelf-efficacyAutonomy
Empowerment -decreased reliance
on experts
Apomediation replacingthe intermediary
Success
FailureIntermediary
reliance on authorities/ experts
Gunther Eysenbach. Credibility of Health Information and Digital Media: New Perspectives and Implications for Youth. In: Miriam J. Metzger & Andrew J. Flanagin (eds.). Digital Media, Youth, and Credibility. MacArthur Foundation Series on
Digital Media and Learning. MIT Press 2007 http://www.mitpressjournals.org/doi/pdf/10.1162/dmal.9780262562324.123
Dynamic Intermediation/Disintermediation/Apomediation (DIDA) Model (Eysenbach, 2007)
Characteristics of PHR 2.0
“PHR 2.0” have “Web 2.0-esk” design features that enable / facilitate participation, collaboration, openess, and apomediation– Model social relationships between individuals– Open standards– Acknowledge consumers as “prosumers”– Reputation management, collaborative filtering– Ability for consumers to share parts of their health
People want to SHARE some of their personal information
Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BKHow Cancer Survivors Provide Support on Cancer-Related Internet Mailing ListsJ Med Internet Res 2007;9(2):e12<URL: http://www.jmir.org/2007/2/e12/>
Another example for sharing personal health information
Yet another example of an individual happy to share his health record…
Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data Jeana H Frost, Michael P. Massagli J Med Internet Res 2008 (May 27); 10(3):e15
Data ↑ Knowledge ↑Self-efficacy ↑Patient-doctor communication ↑Behavior Change ↑
→
contextualize
PHR 2.0
What does this all mean for health care / eHealth (1) ?
• Consumer Expectations !– Web 2.0 savvy consumers
will push the envelope – Just providing a institutions-
specific “portal” (or tethered PHR) will not be enough
– the next generation of consumers will quickly demand to be able to do more with their data
– Patients 2.0 will demand full control over their data (as a minimum, XML export, ideally an API!)
What does this all mean for health care / eHealth (2) ?
• Importance of Users / Consumers– Encourage participation – users add value– Trust your users as co-developers– Personal health information entered by users is trustworthy!– Facilitate network effects
• Cooperate, don’t control– Consumers as prosumers (producers of co-information)– Towards decentralized quality control– Peers and Web 2.0 tools (recommender systems, collaborative
filtering etc.) will play a powerful role in filtering quality information (decentralized model of quality control)APOMEDIARIES instead of INTERMEDIARIES
Some research questions around PHR 2.0
• To what degree and under which circumstances can “apomediation” replace “intermediation”
• Will building communities within and around PHRs lead to higher consumer engagement, provide additional motivation to enter information, and to more effective behaviour change?
• Will PHR 2.0 approaches reduce the burden on providers as sole producers of education material, information, and gatekeepers?