Eysenbach: Medicine 2.0: The Second Wave On The Web

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 Patient Portals and Web 2.0 – The Next Wave on the Web and Impact on Patient Driven Care Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH

(cited by: Pablo Rivero’s presentation)

“ 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 Building social patient networks on the Web

Traditional hospital-based health care system Obesity

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

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: smoking , high body mass index, low fruit and vegetable intake, physical inactivity, alcohol use, unsafe sex, urban air pollution, indoor use of solid fuels, and injections from healthcare settings contaminated with hepatitis B or C virus.
Lancet. 2005;366:1784-1793

Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16 Healthcare 1.0 Healthcare 2.0

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

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

Social Networks Connect Users into Communities of Trust (or interests)

...A Bubble? A Bubble? ...A bubble? ...A Bubble? ...A Bubble? ...A Bubble? ...A Bubble? ...A Bubble? Photo courtesy of brokenchopstick

“ Web 2.0 is a meaningless buzzword used by Starbucks-slurping cretins.” “ Ilyag”, http://digg.com/tech_news/10_definitions_of_Web_2_0

Characteristics of Web 2.0 applications
Users owning the data on the site and exercising control over that data
An architecture of participation and democracy that encourages users to add value to the application as they use it
A rich, interactive, user-friendly interface
Some social-networking aspects
"Network as platform" — delivering (and allowing users to use) applications entirely through a Web browser
http://en.wikipedia.org/wiki/Web_2.0

“ old” vs “new”
Web 1.0
DoubleClick
OFoto
Akamai
Mp3.com
Britannica Online
Personal webpages
Page views
Screen scraping
Publishing
Content management systems
Directories/taxonomy
Stickiness
Web 2.0
Google Adsense
FlickR
BitTorrent
Napster
Wikipedia
Blogging
Cost per click
Web services
Participation
Wikis
Tagging (folksonomy)
Syndication
Tim O’Reilly, What is Web 2.0 http://www.oreillynet.com/pub/a/oreilly/tim/news/2005/09/30/what-is-web-20.html

Web 2.0 = Culmination of Converging Trends Technical Business Social Web 2.0

Social Trends
Spread of Broadband
Increasingly ubiquitous and fast connections
A generation of “digital / web natives”
Living on the web
Social networking; blogging; instant messenger
Create, not just consume
Some hard lessons about data ownership
Don’t steal my data; don’t lock me in

Business Trends
Exploit the Long Tail
At internet scale even niche communities are very large
“ We sold more books today that we didn't sell at all yesterday, than we sold today of all the books that did sell yesterday.”
Amazon employee quoted on Wikipedia
Success of web services
No need to own the user interface. It's your data that they want
Users can enrich your data
“ Harnessing collective intelligence of users”
Trust your users (Wikipedia)
Review and Recommend; Social Bookmarking; Folksonomies

Technology Trends
The Power of XML
Easier to exchange and process application independent data
Agile Engineering
Incrementally develop your product; short release cycles
Continually adapt to user needs
“ The Perpetual Beta”
Maturation of the browser
XHTML, DOM, CSS, Javascript
Browser as platform, not just document viewer

JMIR “Medicine 2.0” Special Theme Issue (and Congress) www.jmir.org

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 Portals and “PHR 2.0”

SIMS Partnership Patient Portal
Patient Portal:
A secure, web-based information system that supports patient education, patient-provider communication, and the achievement of self-management goals.
Improves the patient experience by providing:
Personalized information and care
Treatment plans
Education
Clinical data
Links to community programs
Transforms heath care service delivery:
Empowers patients with 24/7 access to information and tools
Enables patient participation in decision-making processes
Encourages self-management behaviours that lead to improved outcomes
Source: Matt Anderson, CIO SIMS Partnership

Blood Pressure - Chart Source: Jay Mercer

PHR
In some concepts, the PHR includes the patient’s interface to a healthcare provider’s electronic health record (EHR).
In others, PHRs are any consumer/patient-managed health record .
“ This lack of consensus makes collaboration, coordination and policymaking difficult. It is quite possible now for people to talk about PHRs without realizing that their respective notions of them may be quite different.”
Report recommendation from the National Committee on Vital and Health Statistics “Personal Health Records and Personal Health Record Systems” http://www.ncvhs.hhs.gov/0602nhiirpt.pdf http://www.webcitation.org/5VlINiXs3 (Feb, 2006).

EMR “ Tethered” PHR/ PAEHR “ stand-alone” PHR PHR EMR Read only Read+Write/Annotate PHR PHR © Gunther Eysenbach, CC-BY

EMR EMR PHR Different providers “ interconnected” PHR © Gunther Eysenbach, CC-BY PHR PHR

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

Tang et al, JAMIA 2006

EMR EMR PHR Different providers Health Information is tightly protected © Gunther Eysenbach, CC-BY PHR PHR

What these models neglect: 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

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

Current challenges of PH applications
Portals, PHRs etc currently repeat the fragmentation in health care
few initiatives actually span different institutions
Data standards, terminology, messaging, content
Consumer health vocabulary versus professional vocabulary (jargon)
Privacy
Incentives:
Consumers are not intrinsically motivated to enter / manage their information esp. if nobody reviews it – who will do that job?
Are people willing and able to take on that responsibility for their health (not all are)?

Will social networking provide additional mechanisms and incentives for people to manage their own health (and health information)? http://www.competeinc.com/news_events/pressReleases/168/ http://www.webcitation.org/5VuPjJxo5

Conclusions: Implications for eHealth and Health Policy

What does this all mean for health care / eHealth (1) ? “ [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
Current developments will help to engage patients, but the next generation 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!)

What does this all mean for health care / eHealth (2) ?
Long Tail
Even patients with rare diseases generate enough critical mass to create patient networks
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
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

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 (Eysenbach, 2007).
While the traditional intermediary is the “expert,” apomediaries consist of a broader community including experts, parents, teachers, peers, 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 www.mitpressjournals.org/doi/pdf/10.1162/dmal.9780262562324.123 Dynamic Intermediation/Disintermediation/Apomediation (DIDA) Model (Eysenbach, 2007)

- Tailored Patient Education - Online Health Risk Assessments
- Online Support Groups
Discussion Forums
Social Networks
Health Care Providers ( Networked ) Distributed, interoperable EHR
- Secure Email teleadvice
Triage
VideoConference
Access to own EHR/PHR
Annotate entries
- Symptom Diaries
- Email follow-ups - Mobile Health reminders - Online Rx refills - Online Scheduling for Office Visits - Waiting list management Quality ratings eHealth Care 2.0 Web Search Provider Selection based on eRatings and preferences

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

Thank you! Dr G. Eysenbach, Email: geysenba@uhnres.utoronto.ca, Personal Homepage: http://yi.com/ey/

Eysenbach: Medicine 2.0: The Second Wave On The Web

by Gunther Eysenbach

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Eysenbach: Medicine 2.0: The Second Wave On The Web Presentation Transcript