Keynote talk at the eHealth Symposium in Twente, 20 May 2008

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 Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH State of the art of eHealth Research State of the art of eHealth Research

3. Canada / Ontario Source: Wikipedia Pop. 31.6 Mio (Ontario: 12 Mio) (in Ontario)

4. Ontario: 12 Mio The Netherlands: 16 Mio

5. Centre for Global eHealth Innovation, Toronto MISSION: “ To research how to help people access the information and services they need, when and where they need them, regardless of who they are”.

6. lab area

7. Centre for Global eHealth Innovation

10. www.jmir.org G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

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

14. Traditional hospital-based health care system Obesity

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

16. World Carbon Emissions Map

17. World Happiness Map

20. 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…

21. eHealth can support behavior change and prevention

28. Patient Portals and “PHR 2.0”

33. Blood Pressure - Chart Source: Jay Mercer

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

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

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

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

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

40. Tang et al, JAMIA 2006

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

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

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

44. 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

45. 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”

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

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

48. 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/>

49. Another example for sharing personal health information

50. 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)

55. Challenge 1: Funding Health Engineering Social Sciences

57. Challenge 2: Interdisciplinarity and information scatter (grey inserts are citing slides by David Ahern, Critical Issues in eHealth Research Conference, 2005) 1702 papers (2003/2004) indexed with “Internet”[Majr MeSH] were scattered across 685 (!) different journals Source: Eysenbach G, Norman C Introduction to CATCH-IT Reports: Critically Appraised Topics in Communication, Health Informatics, and Technology J Med Internet Res 2004;6(4):e49 <URL: http://www.jmir.org/2004/4/e49/>

60. Challenge 3: Ethical issues in qualitative research (informed consent, public vs private space) Eysenbach G, Till JE. Ethical issues in qualitative research on Internet communities. BMJ 2001; 323: 1103-1105

61. Eysenbach G, Till JE. Ethical issues in qualitative research on Internet communities. BMJ 2001; 323: 1103-1105

62. Design Challenges

63. Challenge 4: Confounders “ After a median follow-up of three years, use of the Internet appears to be a prognostic factor for better overall survival (Fig. 1).” Weissenberger C et al. [rapid e-response to Eysenbach G. The impact of the Internet on cancer outcomes. CA Cancer J Clin 2003; 53(6): 356-371]

65. Contamination

67. Challenge 6 Attrition, adoption, non-use of the intervention Eysenbach G The Law of Attrition J Med Internet Res 2005;7(1):e11 <URL: http://www.jmir.org/2005/1/e11/>

69. Challenge 7: Standards Eysenbach G. J Med Internet Res 2004;6(3):e34 <http://www.jmir.org/2004/3/e34/> JMIR is championing consensus building around reporting standards of eHealth research

72. Systematic reviews and meta-analysis

76. … and the list goes on and on…

77. eHealth Research Centre Twente … can make a contribution !

78. Partnership between eHealth Research Centre Twente and Centre for Global eHealth Innovation PhD student exchange Co-supervising students Project proposals (EU) Connected labs Prototype for a “Network of Centres of Excellence in eHealth Research”?

79. Take two in the morning and don’t ask questions Holy land of the knowing Hole of ignorance physician patient Eysenbach G, Jadad AR. Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/> No trespassing

80. Let me educate* you *(ex ducere = to lead out) Hole of ignorance physician patient No trespassing without professional guidance Holy land of the knowing Eysenbach G, Jadad AR. Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/>

81. WWW email Self-support physician patient Eysenbach G, Jadad AR. Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/> No trespassing without professional guidance

82. Welcome! Watch your step Consumer Health Informatics physician patient Eysenbach G, Jadad AR. Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/>