Eysenbach: eHealth

Slide 1: State of the art of eHealth Research State of the art of eHealth Research Associate Professor  Gunther Gunther Department of Health Policy, Management and Eysenbach MD MPH Eysenbach MD MPH Evaluation, University of Toronto; Visiting Professor, Senior Scientist,  Faculty of Behavioural Centre for Global eHealth Innovation, Sciences Division of Medical Decision Making and Health Care Research;  University of Twente, Toronto General Research Institute of the UHN, Toronto The Netherlands General Hospital, Canada

Slide 2: Talk Outline – Centre for Global eHealth Innovation – Importance of eHealth Research – eHealth Trends • Personal Health Applications, Patient accessible health records, PHR • Web 2.0 – (some) eHealth research problems

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

Slide 4: Ontario: 12 Mio The Netherlands: 16 Mio

Slide 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”.

Slide 6: lab area

Slide 7: Centre for Global eHealth Innovation

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

Slide 11: Journal of Medical Internet Research (JMIR) [www.jmir.org] • Now in its 10th publishing year • Independently published (no Elsevier involved!), run and owned by scientists for scientists • #2 ranked journal in medical informatics by ISI journal impact factor (2.9), #6 in health services research • Approx 50.000 readers per month, 20.000 TOC alert subscribers • Open Access (HTML freely accessible), no subscription necessary to read articles, first OA journal in this field – Various spin-off e-publishing innovations (e.g. webcitation.org) – Unique contributions to OA open source software (OJS) • Individual and institutional memberships for value-added services (PDFs) and article processing fee (APF) waivers • Focus on Internet/web-applications and consumer health informatics, but scope is expanding to “ICT in health” • Aims to publish non-technical, clinically or policy-relevant papers, rigorous qualitative or quantitative research papers

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

Slide 13: eHealth Care 2.0 Web Search Provider Selection - Online Support Groups based on eRatings -Discussion Forums and preferences - Secure Email teleadvice -Social Networks -Triage - VideoConference Health Care Providers (Networked ) Distributed, interoperable EHR - Email follow-ups - Mobile Health reminders -Online Rx refills -Access to own EHR/PHR -Ambient systems -Annotate entries - Symptom Diaries - Tailored Patient - Online Scheduling for Education Office Visits - Online Health Risk Quality ratings - Waiting list management Assessments

Slide 14: Obesity Traditional hospital-based health care system

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

Slide 16: World Carbon Emissions Map

Slide 17: World Happiness Map

Slide 18: Common health care problems in industrialized countries • Waiting lists • Costs, private health insurance becoming increasingly unaffordable • Shortage of doctors and nurses (or distribution problems esp. in rural areas) • Obesity (esp. in children) These are ALL problems where eHealth plays a critical role

Slide 19: What is eHealth? • eHealth = Telemedicine? (NO!) • eHealth = Medical Informatics? (NO!) • eHealth = Electronic Health Records? (NO!)

Slide 20: The importance of behavior change and prevention… Between 1991-2003, cancer mortality decreased by 12% 40% of this decrease is attributed to smoking cessation Thun, M. J et al. Tob Control 2006;15:345-347 http://tobaccocontrol.bmj.com/cgi/content/full/15/5/345 Copyright ©2006 BMJ Publishing Group Ltd.

Slide 21: eHealth can support behavior change and prevention

Slide 22: The importance of behavioral factors and preventive medicine • More than one third of cancer deaths are attributable to nine modifiable risk factors • The 9 factors are: smoking, high body mass index, low fruit and vegetable intake, physical inactivity, alcohol use, unsafe sex, urban air pollution, indoor use of solid fuels, and injections from healthcare settings contaminated with hepatitis B or C virus. Lancet. 2005;366:1784-1793

Slide 23: Promises & Challenges: 10 E‘s in e-health 1. Efficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities, patient involvement, and home care. 2. Enhancing quality of care –by increasing transparency, involving consumers as • quality assurance power, and directing patienta patient are not known by 4 of 10 prescriptions taken by streams to the best quality providers. 3. Evidence based - e-health interventions should undergo rigorous scientific any physician evaluation and the effectiveness of online interventions should be demonstrated. • 1 of 7 admissions result from missing information in 4. Empowerment of consumers and patients 5. Encouragement of a partnership between patient and health professional emergency rooms 6. Education of physicians and consumers through online sources • 1of 5 lab and xray tests and duplicates because of 7. Enabling information exchange are communication in a standardized way between health care establishments. retrieval barriers 8. Extending the scope of health care beyond its conventional boundaries. 9. Ethics5 deathscontent, informed consent, privacy and equity issues. • 1 of – quality of would be prevented if screening information 10. Equity available care more equitable without deepening the gap between the were – making health ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

Slide 24: Promises & Challenges: 10 E‘s in e-health 1. Efficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. Enhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. Evidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. Empowerment of consumers and patients 5. Encouragement of a partnership between patient and health professional 6. Education of physicians and consumers through online sources 7. Enabling information exchange and communication in a standardized way between health care establishments. 8. Extending the scope of health care beyond its conventional boundaries. 9. Ethics – quality of content, informed consent, privacy and equity issues. 10. Equity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

Slide 25: Promises & Challenges: 10 E‘s in e-health 1. Efficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. Enhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. Evidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. Empowerment of consumers and patients 5. Encouragement of a partnership between patient and health professional 6. Education of physicians and consumers through online sources 7. Enabling information exchange and communication in a standardized way between health care establishments. 8. Extending the scope of health care beyond its conventional boundaries. 9. Ethics – quality of content, informed consent, privacy and equity issues. 10. Equity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

Slide 27: Promises & Challenges: 10 E‘s in e-health 1. Efficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. Enhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. Evidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. Empowerment of consumers and patients 5. Encouragement of a partnership between patient and health professional 6. Education of physicians and consumers through online sources 7. Enabling information exchange and communication in a standardized way between health care establishments. 8. Extending the scope of health care beyond its conventional boundaries. 9. Ethics – quality of content, informed consent, privacy and equity issues. 10. Equity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

Slide 28: Patient Portals and “PHR 2.0”

Slide 32: SIMS Partnership Patient Portal • Patient Portal: – A secure, web-based information system that supports patient education, patient-provider communication, and the achievement of self-management goals. • Improves the patient experience by providing: – Personalized information and care – Treatment plans – Education – Clinical data – Links to community programs Source: Matt Anderson, CIO SIMS Partnership

Slide 33: Blood Pressure - Chart Source: Jay Mercer

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

Slide 35: Source: Prof Jan Kremer http://www.webcitation.org/5XwJY3Wkg

Slide 36: PHR • In some concepts, the PHR includes the patient’s interface to a healthcare provider’s electronic health record (EHR). • In others, PHRs are any consumer/patient- managed health record. • “This lack of consensus makes collaboration, coordination and policymaking difficult. It is quite possible now for people to talk about PHRs without realizing that their respective notions of them may be quite different.” 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).

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

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

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

Slide 40: Tang et al, JAMIA 2006

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

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

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

Slide 44: Consumer / Patient Medicine 2.0 (“next generation medicine”) Virtual Full paper will appear as: Communities Gunther Eysenbach. Medicine 2.0. (peer-to-peer) J Med Internet Res 2008 (in press) http://dx.doi.org/ 10.2196/jmir.1030 Health 2.0 DOI:10.2196/jmir.1030 Revolution Health PatientsLikeMe HealthBook Google Health Personal Health AJAX Blogs Record RSS Wikis 2.0 Web 2.0 Technologies & Approaches HealthVault E-learning RDF, Semantic Web XML JMIR ALIVE Virtual Worlds BMC Sermo Peer-review 2.0 WiserWiki PLoS One Professional eDoctr WebCite Communities PeerClip Connotea Science 2.0 CiteULike (peer-to-peer) MDPIXX Dissect Medicine BioWizard caBIG HealthMap Health Professionals Biomedical Researchers

Slide 45: Disintermediation / Apomediation Personal General health Patient data External health information evidence information Relevant Health Record +credible Medical knowledge Information Irrelevant Patient Irrelevant inaccurate Literature accessible Information Mass Media electronic Internet health records Physician (health professionals, librarians) as “Apomediaries” intermediary Patient

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

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

Slide 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/>

Slide 49: Another example for sharing personal health information

Slide 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)

Slide 51: 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!)

Slide 52: 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

Slide 53: Current challenges of PH applications • Portals, PHRs etc currently repeat the fragmentation in health care • Few initiatives actually span different institutions • Data standards, terminology, messaging, content • Consumer health vocabulary versus professional vocabulary (jargon) • Privacy • Providers initially skeptic, patients enthusiastic (reverses after use) • Impact on outcomes? – Difficult to show an impact on health outcomes or resource utilization – The most relevant outcome measure is perhaps trust • Incentives: – Consumers are not intrinsically motivated to enter information esp. if nobody reviews it – who will do that job? – Tax-incentives – Incentives for providers? Reimbursement? • Are people willing and able to take on that responsibility for their health (not all are)?

Slide 54: eHealth research in the context of the US system vs non-US • In the US, consumers are concerned about possible misuse of PHR data by insurance providers or employers [1] – Less a concern in a system of universal health coverage – Less a concern if PHR systems are not offered by employers, but by healthcare organizations and/or the government • US users are willing to pay [1,2] (may not be the case in systems where users are not used to the idea) • US public ideologically less interested in equity (more in individual opportunity) [3] – > Excluding disadvantaged populations may be a bigger concern in non- US countries 1) http://www.projecthealthdesign.org/media/file/Massoudi.pdf 2) 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/> 3) http://www.mja.com.au/public/issues/179_09_031103/lee100203_fm.html

Slide 55: Challenge 1: Funding Health Engineering Social Sciences

Slide 57: Challenge 2: Interdisciplinarity and information scatter 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/> (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

Slide 58: Evidence ladder Evidence Ladder Strong evidence • Meta-Analysis • Randomized studies • Non-randomized cross-sectional or longitudinal studies • Qualitative studies Weaker evidence (but not “inferior” studies in the eHealth context!)

Slide 59: Methodological challenges Evidence Ladder Strong evidence • Meta-Analysis: Publication bias, Complex interventions, Heterogeneity • Randomized studies: Attrition • Non-randomized cross-sectional or longitudinal studies: strong confounders, Web-based Questionnaires • Qualitative studies: Ethical challenges (informed consent) Weaker evidence (but not “inferior” studies in the eHealth context!)

Slide 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

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

Slide 62: Design Challenges

Slide 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]

Slide 64: Confounders Exposure Outcomes ? Internet Survival use Age etc. Confounders • Age (younger patients more likely to survive, and more likely to use Internet) • Education (higher education is usually associated with better outcomes, as well as with higher Internet use) • Socio-economic status (SES) (poor people have worse survival chances, and are less likely to use the Internet) • Morbidity (sick patient will die sooner and are less likely to use the Internet)

Slide 65: Contamination

Slide 66: Challenge 5: The problem of “controlling” the control group • On the Internet, similar interventions may be accessible for the control group (e.g. smoking cessation) • difficult to “control” what the control group does • privacy / ethical concerns limit the amount of data which can be gathered (e.g. logging all accessed URLs) 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/>

Slide 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/>

Slide 68: Challenge 6: Attrition, adoption, non-use of the intervention • Attrition: Loss of users – Non-use – Drop-outs • Intention to treat analysis avoids bias, but large drop-outs/non-use reduces ability to detect true effects • Importance of formative evaluation and usability evaluation • Experiment with new designs, e.g. “run-in and withdraw” design [Eysenbach, 2005] Eysenbach G The Law of Attrition J Med Internet Res 2005;7(1):e11 <URL: http://www.jmir.org/2005/1/e11/>

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

Slide 70: Outcomes / measures • Are we looking at the right ones? • Are they valid and responsive enough for an ehealth setting? • Can we compare them across studies?

Slide 71: Challenge 8: Outcomes • Example: Systematic review on virtual peer-to-peer support (Eysenbach et al. BMJ 2004) • 11 different investigators used 12 different social support instruments • All developed / validated for face-to-face social support

Slide 72: Systematic reviews and meta- analysis

Slide 73: Challenge 9: Meta-Analysis and heterogeneity of studies • Main Challenge: Heterogeneity of interventions and measures precludes tra cted re formal pooling of results

Slide 74: Challenge 10a: Knowledge Synthesis: How many eHealth trials remain unpublished because they are negative? • Negative trials are less often published than positive trials (publication bias) – E.g. 55% of published RCT show “positive” results, vs only 14% of unpublished trials (Dickersin, 1987) • Many eHealth trials are low-profile / low budget => the problem in eHealth is probably worse

Slide 75: Challenge 10b: How many eHealth trials (if they are published) ignore negative outcomes? • On avg. 50% of efficacy and 65% of harm outcomes per trial were incompletely reported • Statistically significant outcomes were more likely to be reported • 62% of trials had at least one primary outcome changed • eHealth trials often exploratory with many outcomes measured -> authors may stress (and not mention) negative outcomes Chan et al. JAMA. 2004 May 26;291(20):2457-65

Slide 76: … and the list goes on and on…

Slide 77: eHealth Research Centre Twente …can make a contribution !

Slide 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”?

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

Slide 80: Let me educate* you No trespa withou ssing tp rofe guidan ssional ce Holy land of the knowing *(ex ducere = to lead out) Hole of ignorance Eysenbach G, Jadad AR. physician patient Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/>

Slide 81: email al t pr ssing dan ss ion o ce ofe N wit respa gui hou t Self-support WWW Eysenbach G, Jadad AR. physician patient Consumer health informatics in the internet age. <URL: http://www.jmir.org/2001/2/e19/>

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

Slide 83: Thank you! Dr G. Eysenbach, Email: geysenba@uhnres.utoronto.ca or @gmail.com, Journal: www.jmir.org Research Assistants, Technical Analysts Frank Goertzen, James Cordiner J. Warman, D. Davis, M.J. Suhonos, J.S. Dumais, F. Ahmed Funding Change Foundation, Canadian Institutes for Health Research, NSERC, European Union, SSHRC

Slide 84: The Future: Trends • Ubiquitous, pervasive, ambient computing (incl. domotics) • Powerful handheld devices • Applications with geospatial awareness