Eysenbach AMIA Keynote: From Patient Needs to Personal Health Applications

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 Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH

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 10 th 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?

A “global” perspective… (?) Gunther’s World

World Obesity Map http://www.iaso.org/docs/pdf/review2003.pdf http://www.webcitation.org/5VvwTOs3l

World Carbon Emissions Map

World Happiness Map

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 Kremer http://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-based health 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.
Lancet. 2005;366:1784-1793

Copyright ©2006 BMJ Publishing Group Ltd. Thun, M. J et al. Tob Control 2006;15:345-347 http://tobaccocontrol.bmj.com/cgi/content/full/15/5/345 Between 1991-2003, cancer mortality decreased by 12% 40% of this decrease is attributed to smoking cessation The importance of behavior change and prevention…

eHealth can support behavior change and prevention See also JMIR Theme Issue on Web-assisted Tobacco Interventions (forthcoming - 4 th quarter /2008)

Promises/Drivers of PHR (1)
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 Trial Florence T Bourgeois, William Simons, Karen Olson, John Brownstein, Kenneth Mandl J Med Internet Res 2008 (Mar 14); 10(1):e5

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.

Increasing compliance (adherence) and improving outcomes
Transparency ↑ -> Trust ↑ Adherence ↑ Outcomes ↑ Satisfaction ↑ Costs ↓ -> -> Data ↑ Knowledge ↑ Self-efficacy ↑ Patient-doctor communication ↑ Behavior Change ↑ Eysenbach, 2008 -> contextualize

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

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
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 KG Web Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online Services J Med Internet Res 2006;8(4):e26 <URL: http://www.jmir.org/2006/4/e26/>

Patient motivation is often limited (and short-lived) => Attrition RCT open Eysenbach G The Law of Attrition J Med Internet Res 2005;7(1):e11 <URL: http://www.jmir.org/2005/1/e11/>

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

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 with geospatial awareness Electronic Medical Record (Provider) PHR / PHA Platform Natural speech interfaces Personal Monitoring Tools

Sorbi MJ, Mak SB, Houtveen JH, Kleiboer AM, van Doornen LJP Mobile Web-Based Monitoring and Coaching: Feasibility in Chronic Migraine J 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 ME To Track or Not to Track: User Reactions to Concepts in Longitudinal Health Monitoring J Med Internet Res 2006;8(4):e29 <URL: http://www.jmir.org/2006/4/e29/>

User reactions to tracking
there is great variability in what factors about their life people would want to track
what people wish to track will change over time, based upon their age, life circumstances, interactions with friends and family, health status, and general curiosity
ubiquitous “monitoring” systems may be more readily adopted by end users if they are developed as tools for personalized, longitudinal self-investigation that primarily help end users, instead of or in addition to medical professionals, learn about the conditions and variables that impact their social, cognitive, and physical health.
Beaudin JS, Intille SS, Morris ME To Track or Not to Track: User Reactions to Concepts in Longitudinal Health Monitoring J Med Internet Res 2006;8(4):e29 <URL: http://www.jmir.org/2006/4/e29/>

EMR “ Tethered” PHR/ PAEHR “ stand-alone” PHR PHR EMR Read only Read+Write/Annotate PHR 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

EMR EMR PHR Different providers “ interconnected” PHR PHR 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

Records at Financial institutions Personal Finance Records © Gunther Eysenbach, CC-BY

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

http://en.wikipedia.org/wiki/Image:Web20_en.png

Source: http://web2.wsj2.com/

www.medicine20congress.com , Toronto, Sept 4-5 th , 2008

Medicine 2.0 (“next generation medicine”) Full paper will appear as: Gunther Eysenbach. Medicine 2.0. J Med Internet Res 2008 (in press) http://dx.doi.org/ 10.2196/jmir.1030 DOI: 10.2196/jmir.1030 Consumer / Patient Health Professionals Biomedical Researchers Science 2.0 Peer-review 2.0 Personal Health Record 2.0 Virtual Communities (peer-to-peer) Professional Communities (peer-to-peer) Health 2.0 HealthVault Google Health HealthBook Sermo WebCite CiteULike MDPIXX WiserWiki eDoctr BioWizard Dissect Medicine E-learning PLoS One BMC JMIR Wikis Blogs RSS RDF, Semantic Web Virtual Worlds Web 2.0 Technologies & Approaches Apomediation Participation Social Networking Collaboration XML AJAX Openess Revolution Health PatientsLikeMe PeerClip Connotea ALIVE HealthMap caBIG

Patient data External evidence General health information Personal health information Literature Mass Media Internet Health Record Relevant +credible Information Patient Patient accessible electronic health records Medical knowledge Disintermediation / Apomediation Physician (health professionals, librarians) as intermediary Irrelevant inaccurate Irrelevant Information “ Apomediaries”

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

Knowledge Self-efficacy Autonomy Empowerment - decreased reliance on experts Apomediation replacing the intermediary Success Failure Intermediary 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)

Implications of the apomediation model for PHRs
Some patients will still prefer the “intermediation” (gatekeeper) approach, while others will prefer a “bottom-up” apomediation model (e.g. Web 2.0 approaches)
Knowledge, self-efficacy, desire for autonomy are hypothesized to be predictors for what model is chosen in a given situation
Situation-specific!

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 records with anybody

People want to SHARE some of their personal information Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists J 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

EMR EMR PHR PHR PHR Different providers PHR 2.0 © Gunther Eysenbach, CC-BY Community Other peoples’ PHR Other peoples’ PHR Other peoples’ PHR

PHR 2.0 Transparency ↑ -> Trust ↑ Adherence ↑ Outcomes ↑ Satisfaction ↑ Costs ↓ -> -> Data ↑ Knowledge ↑ Self-efficacy ↑ Patient-doctor communication ↑ Behavior Change ↑ -> contextualize Community Reduces the burden on health professionals and other intermediaries TRA Social support

Some other implications of Web 2.0: Shifting expectations “ [People from the] Google Generation are impatient and have zero tolerance for delay, information and entertainment needs must be fulfilled immediately ( e.g. Johnson, 2006: Shih and Allen 2006)” Information Behaviour of the Researcher of the Future – The Literature on Young People and Their Information Behavior URL:http://www.ucl.ac.uk/slais/research/ciber/downloads/GG%20Work%20Package%20II.pdf. Accessed: 2008-04-09. (Archived by WebCite ® at http://www.webcitation.org/5WxqwuH4g)

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?

www.medicine20congress.com , Toronto, Sept 4-5 th , 2008

Thank you!
Funding
Change Foundation, Canadian Institutes for Health Research, NSERC, European Union, SSHRC
Dr G. Eysenbach, Email: [email_address] or @gmail.com, Journal: www.jmir.org

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Eysenbach AMIA Keynote: From Patient Needs to Personal Health Applications

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Eysenbach AMIA Keynote: From Patient Needs to Personal Health Applications — Presentation Transcript