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 PHR 2.0 Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH

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

JMIR “Medicine 2.0” Special Theme Issue

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

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

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

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!)

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

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

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/