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  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
Talk Outline ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Canada / Ontario Source: Wikipedia Pop. 31.6 Mio (Ontario: 12 Mio) (in Ontario)
Ontario: 12 Mio The Netherlands: 16 Mio
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”.
lab area
Centre for Global eHealth Innovation
 
 
www.jmir.org G. Eysenbach. What is eHealth?  J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20
Journal of Medical Internet Research (JMIR) [www.jmir.org] ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Eysenbach G: Consumer health informatics.  BMJ  2000;320:1713-16
- Tailored Patient Education - Online Health Risk  Assessments ,[object Object],[object Object],[object Object],Health Care Providers ( Networked  ) Distributed, interoperable EHR ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],- Online Scheduling for Office Visits - Waiting list management Quality ratings eHealth Care 2.0 Web Search Provider Selection  based on eRatings and preferences
Traditional hospital-based health care system Obesity
World Obesity Map http://www.iaso.org/docs/pdf/review2003.pdf http://www.webcitation.org/5VvwTOs3l
World Carbon Emissions Map
World Happiness Map
Common health care problems in industrialized countries ,[object Object],[object Object],[object Object],[object Object],These are ALL problems where eHealth plays a critical role
What is eHealth? ,[object Object],[object Object],[object Object]
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 ,[object Object],[object Object],Lancet.  2005;366:1784-1793
Promises & Challenges: 10 E‘s in e-health ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20 ,[object Object],[object Object],[object Object],[object Object]
Promises & Challenges: 10 E‘s in e-health ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20
Promises & Challenges: 10 E‘s in e-health ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20
 
Promises & Challenges: 10 E‘s in e-health ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20
Patient Portals and “PHR 2.0”
 
 
 
SIMS Partnership Patient Portal ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Source: Matt Anderson, CIO SIMS Partnership
Blood Pressure - Chart Source: Jay Mercer
The Netherlands have more to offer than tulips and windmills…
Source: Prof Jan Kremer http://www.webcitation.org/5XwJY3Wkg   http://www.epddag.nl/2007/ppt2007/0pres-j.kremer.pdf
PHR ,[object Object],[object Object],[object Object],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
http://en.wikipedia.org/wiki/Image:Web20_en.png
Source: http://web2.wsj2.com/
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 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”
EMR EMR PHR Different providers Health Information is tightly protected © Gunther Eysenbach,  CC-BY PHR PHR
EMR EMR PHR PHR PHR Different providers PHR 2.0 © Gunther Eysenbach,  CC-BY Community Other peoples’ PHR Other peoples’ PHR Other peoples’ PHR
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
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) ? ,[object Object],[object Object],[object Object],[object Object],[object Object]
What does this all mean for health care / eHealth (2) ? ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Current challenges of PH applications ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
eHealth research in the context of the US system vs non-US  ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Challenge 1: Funding Health Engineering Social Sciences
 
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/>
Evidence ladder ,[object Object],[object Object],[object Object],[object Object],Evidence Ladder Strong evidence Weaker evidence (but not “inferior” studies in the eHealth context!)
Methodological challenges ,[object Object],[object Object],[object Object],[object Object],Evidence Ladder Strong evidence Weaker evidence (but not “inferior” studies in the eHealth context!)
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
Eysenbach G, Till JE.  Ethical issues in qualitative research on Internet communities.  BMJ  2001; 323: 1103-1105
Design Challenges
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]
Confounders ,[object Object],[object Object],[object Object],[object Object],Internet  use Survival Exposure Outcomes ? Age etc. Confounders
Contamination
Challenge 5:  The problem of “controlling” the control group ,[object Object],[object Object],[object Object],Eysenbach G Issues in evaluating health websites in an Internet-based randomized controlled trial J Med Internet Res 2002;4(3):e17 <URL: http://www.jmir.org/2002/3/e17/>
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/>
Challenge 6:  Attrition, adoption,  non-use of the intervention ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Eysenbach G The Law of Attrition J Med Internet Res 2005;7(1):e11 <URL: http://www.jmir.org/2005/1/e11/>
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
Outcomes / measures ,[object Object],[object Object],[object Object]
Challenge 8:  Outcomes ,[object Object],[object Object],[object Object]
Systematic reviews and meta-analysis
Challenge 9: Meta-Analysis and heterogeneity of studies ,[object Object],retracted
Challenge 10a:  Knowledge Synthesis: How many eHealth trials remain unpublished because they are negative? ,[object Object],[object Object],[object Object]
Challenge 10b: How many eHealth trials (if they are published) ignore negative outcomes? ,[object Object],[object Object],[object Object],[object Object],Chan et al.  JAMA. 2004 May 26;291(20):2457-65
…  and the list goes on and on…
eHealth Research Centre Twente … can make a contribution !
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”?
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
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/>
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
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/>
Thank you! ,[object Object],[object Object],[object Object],[object Object],[object Object],Dr G. Eysenbach,  Email:  [email_address]  or @gmail.com, Journal: www.jmir.org
The Future: Trends ,[object Object],[object Object],[object Object]

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Eysenbach: eHealth

  • 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
  • 2.
  • 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”.
  • 7. Centre for Global eHealth Innovation
  • 8.  
  • 9.  
  • 10. www.jmir.org G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20
  • 11.
  • 12. Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16
  • 13.
  • 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
  • 18.
  • 19.
  • 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
  • 22.
  • 23.
  • 24.
  • 25.
  • 26.  
  • 27.
  • 28. Patient Portals and “PHR 2.0”
  • 29.  
  • 30.  
  • 31.  
  • 32.
  • 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
  • 36.
  • 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
  • 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)
  • 51.
  • 52.
  • 53.
  • 54.
  • 55. Challenge 1: Funding Health Engineering Social Sciences
  • 56.  
  • 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/>
  • 58.
  • 59.
  • 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
  • 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]
  • 64.
  • 66.
  • 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/>
  • 68.
  • 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
  • 70.
  • 71.
  • 72. Systematic reviews and meta-analysis
  • 73.
  • 74.
  • 75.
  • 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/>
  • 83.
  • 84.