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 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

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

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] Now in its 10 th 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

Now in its 10 th 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

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

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

- Online Support Groups

Discussion Forums

Social Networks

- Secure Email teleadvice

Triage

VideoConference

Access to own EHR/PHR

Annotate entries

- Symptom Diaries

- Email follow-ups

- Mobile Health reminders

Online Rx refills

Ambient systems

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 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

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)

What is eHealth? eHealth = Telemedicine? (NO!) eHealth = Medical Informatics? (NO!) eHealth = Electronic Health Records? (NO!)

eHealth = Telemedicine? (NO!)

eHealth = Medical Informatics? (NO!)

eHealth = Electronic Health Records? (NO!)

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 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

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.

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities, patient involvement, and home care. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – 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 4 of 10 prescriptions taken by a patient are not known by any physician 1 of 7 admissions result from missing information in emergency rooms 1of 5 lab and xray tests are duplicates because of retrieval barriers 1 of 5 deaths would be prevented if screening information were available

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities, patient involvement, and home care.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

4 of 10 prescriptions taken by a patient are not known by any physician

1 of 7 admissions result from missing information in emergency rooms

1of 5 lab and xray tests are duplicates because of retrieval barriers

1 of 5 deaths would be prevented if screening information were available

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – 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

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – 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

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – 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

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

Patient Portals and “PHR 2.0”

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 Transforms heath care service delivery: Empowers patients with 24/7 access to information and tools Enables patient participation in decision-making processes Encourages self-management behaviours that lead to improved outcomes Source: Matt Anderson, CIO SIMS Partnership

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

Transforms heath care service delivery:

Empowers patients with 24/7 access to information and tools

Enables patient participation in decision-making processes

Encourages self-management behaviours that lead to improved outcomes

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 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).

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.”

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) ? 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!)

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!)

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

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

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)?

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)?

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 http://www.projecthealthdesign.org/media/file/Massoudi.pdf 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/> http://www.mja.com.au/public/issues/179_09_031103/lee100203_fm.html

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

http://www.projecthealthdesign.org/media/file/Massoudi.pdf

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/>

http://www.mja.com.au/public/issues/179_09_031103/lee100203_fm.html

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

Meta-Analysis

Randomized studies

Non-randomized cross-sectional or longitudinal studies

Qualitative studies

Methodological challenges 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) Evidence Ladder Strong evidence Weaker evidence (but not “inferior” studies in the eHealth context!)

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)

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 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) Internet use Survival Exposure Outcomes ? 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)

Contamination

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/>

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)

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 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/>

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]

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 Are we looking at the right ones? Are they valid and responsive enough for an ehealth setting? Can we compare them across studies?

Are we looking at the right ones?

Are they valid and responsive enough for an ehealth setting?

Can we compare them across studies?

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

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

Systematic reviews and meta-analysis

Challenge 9: Meta-Analysis and heterogeneity of studies Main Challenge: Heterogeneity of interventions and measures precludes formal pooling of results retracted

Main Challenge: Heterogeneity of interventions and measures precludes formal pooling of results

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

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

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

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

… 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! 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 Dr G. Eysenbach, Email: [email_address] 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

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

Ubiquitous, pervasive, ambient computing (incl. domotics)

Powerful handheld devices

Applications with geospatial awareness