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

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 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

3. www.jmir.org A shameless plug for the #2 ranked health informatics journal…

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

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

7. World Carbon Emissions Map

8. World Happiness Map

13. 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

14. A “global” scan on the state of PHRs internationally

16. “ Gelbes Untersuchungsheft” – (paper-PHR, Germany)

19. National Program for IT in the NHS

20. Paper-based personal health record (Canada)

22. Ontario: SIMS Partnership Patient Portal Source: Matt Anderson, CIO SIMS Partnership

23. 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)

24. The Netherlands have more to offer than tulips and windmills…

25. Source: Prof Jan Kremer http://www.webcitation.org/5XwJY3Wkg http://www.epddag.nl/2007/ppt2007/0pres-j.kremer.pdf

27. Traditional hospital-based health care system Obesity

28. Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16

30. 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…

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

36. • focussing on preventative health care and health promotion, to help keep Australians healthy and out of hospital

39. 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/>

40. 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/>

43. Gaps between patient and provider needs / expectations Credits: Selina Brudnicki & Claudette DeLenardo

44. Gaps between patient and provider needs / expectations Credits: Selina Brudnicki & Claudette DeLenardo

45. People will not enter health information to a significant degree…

46. … (perhaps there are some exceptions)…

47. … 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

48. 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/>

49. Intelligent spoon

52. “ 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.”

55. 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

56. 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

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

58. From: Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6

59. PHR 2.0

60. (credits: Pablo Rivero)

61. “ 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

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

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

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

65. 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

66. 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”

68. 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)

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

72. 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/>

73. Another example for sharing personal health information

74. Yet another example of an individual happy to share his health record…

75. 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

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

77. 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

78. 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)

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