Eysenbach: PHR 2.0 (Personal Health Records 2.0) Vancouver


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Brief talk from the COACH workshop in Vancouver in May 2008 on patient-accessible electronic health records. I am talking about a new paradigm which I call PHR 2.0

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Eysenbach: PHR 2.0 (Personal Health Records 2.0) Vancouver

  1. 1. 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
  2. 2. http://en.wikipedia.org/wiki/Image:Web20_en.png
  3. 3. JMIR “Medicine 2.0” Special Theme Issue
  4. 4. www.medicine20congress.com , Toronto, Sept 4-5 th , 2008
  5. 5. 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
  6. 6. EMR “ Tethered” PHR/ PAEHR “ stand-alone” PHR PHR EMR Read only Read+Write/Annotate PHR PHR © Gunther Eysenbach, CC-BY
  7. 7. EMR EMR PHR Different providers “ interconnected” PHR © Gunther Eysenbach, CC-BY PHR PHR
  8. 8. Records at Financial institutions Personal Finance Records © Gunther Eysenbach, CC-BY
  9. 9. EMR EMR PHR Different providers Health Information is tightly protected © Gunther Eysenbach, CC-BY PHR PHR
  10. 10. 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/>
  11. 11. Another example for sharing personal health information
  12. 12. EMR EMR PHR PHR PHR Different providers PHR 2.0 © Gunther Eysenbach, CC-BY Community Other peoples’ PHR Other peoples’ PHR Other peoples’ PHR
  13. 13. 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)
  14. 14. What does this all mean for health care / eHealth (1) ? <ul><li>Consumer Expectations ! </li></ul><ul><ul><li>Web 2.0 savvy consumers will push the envelope </li></ul></ul><ul><ul><li>Just providing a institutions-specific “portal” (or tethered PHR) will not be enough </li></ul></ul><ul><ul><li>Current developments will help to engage patients, but the next generation will quickly demand to be able to do more with their data </li></ul></ul><ul><ul><li>Patients 2.0 will demand full control over their data (as a minimum, XML export!) </li></ul></ul>
  15. 15. What does this all mean for health care / eHealth (2) ? <ul><li>Long Tail </li></ul><ul><ul><li>Even patients with rare diseases generate enough critical mass to create patient networks </li></ul></ul><ul><li>Importance of Users / Consumers </li></ul><ul><ul><li>Encourage participation – users add value </li></ul></ul><ul><ul><li>Trust your users as co-developers </li></ul></ul><ul><ul><li>Personal health information entered by users is trustworthy! </li></ul></ul><ul><ul><li>Facilitate network effects </li></ul></ul><ul><li>Cooperate, don’t control </li></ul><ul><ul><li>Towards decentralized quality control </li></ul></ul><ul><ul><li>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 </li></ul></ul>
  16. 16. www.medicine20congress.com , Toronto, Sept 4-5 th , 2008
  17. 17. Thank you! Dr G. Eysenbach, Email: geysenba@uhnres.utoronto.ca, Personal Homepage: http://yi.com/ey/