Eysenbach: Medicine 2.0: The Second Wave On The Web

Slide 1: Patient Portals and Web 2.0 – The Next Wave on the Web and Impact on Patient Driven Care Associate Professor Gunther Gunther Department of Health Policy, Management and Eysenbach MD MPH Eysenbach MD MPH 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 Gunther Eysenbach MD, MPH, www.jmir.org 1

Slide 2: (cited by: Pablo Rivero’s presentation) Gunther Eysenbach MD, MPH, www.jmir.org 2

Slide 3: Building social patient networks on the Web “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 Gunther Eysenbach MD, MPH, www.jmir.org 3

Slide 4: Obesity Traditional hospital-based health care system Gunther Eysenbach MD, MPH, www.jmir.org 4

Slide 5: 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 Gunther Eysenbach MD, MPH, www.jmir.org 5 Copyright ©2006 BMJ Publishing Group Ltd.

Slide 6: eHealth can support behavior change and prevention Gunther Eysenbach MD, MPH, www.jmir.org 6

Slide 7: 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 Gunther Eysenbach MD, MPH, www.jmir.org 7

Slide 8: Healthcare 2.0 Healthcare 1.0 Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16 Gunther Eysenbach MD, MPH, www.jmir.org 8

Slide 9: http://en.wikipedia.org/wiki/Image:Web20_en.png 9

Slide 10: Source: http://web2.wsj2.com/ Gunther Eysenbach MD, MPH, www.jmir.org 10

Slide 11: Social Networks Connect Users into Communities of Trust (or interests) Gunther Eysenbach MD, MPH, www.jmir.org 11

Slide 12: A Bubble? ...A bubble? ...A Bubble? Photo courtesy of brokenchopstick ...A Bubble? 12

Slide 13: “Web 2.0 is a meaningless buzzword used by Starbucks-slurping cretins.” “Ilyag”, http://digg.com/tech_news/10_definitions_of_Web_2_0 13

Slide 14: Gunther Eysenbach MD, MPH, www.jmir.org 14

Slide 15: Characteristics of Web 2.0 applications • Users owning the data on the site and exercising control over that data • An architecture of participation and democracy that encourages users to add value to the application as they use it • A rich, interactive, user-friendly interface • Some social-networking aspects • "Network as platform" — delivering (and allowing users to use) applications entirely through a W browser eb http://en.wikipedia.org/wiki/Web_2.0 Gunther Eysenbach MD, MPH, www.jmir.org 15

Slide 16: “old” vs “new” Web 1.0 Web 2.0 • DoubleClick • Google Adsense • OFoto • FlickR • Akamai • BitTorrent • Mp3.com • Napster • Britannica Online • Wikipedia • Personal webpages • Blogging • Page views • Cost per click • Screen scraping • Web services • Publishing • Participation • Content management systems • Wikis • Directories/taxonomy • Tagging (folksonomy) • Stickiness • Syndication Tim O’Reilly, What is Web 2.0 http://www.oreillynet.com/pub/a/oreilly/tim/news/2005/09/30/what-is-web-20.html Gunther Eysenbach MD, MPH, www.jmir.org 16

Slide 17: Web 2.0 = Culmination of Converging Trends Business Web 2.0 Social Technical 17

Slide 18: Social Trends • Spread of Broadband – Increasingly ubiquitous and fast connections • A generation of “digital / web natives” – Living on the web – Social networking; blogging; instant messenger • Create, not just consume • Some hard lessons about data ownership – Don’t steal my data; don’t lock me in 18

Slide 19: Business Trends • Exploit the Long Tail – At internet scale even niche communities are very large – “We sold more books today that we didn't sell at all yesterday, than we sold today of all the books that did sell yesterday.” – Amazon employee quoted on Wikipedia • Success of web services – No need to own the user interface. It's your data that they want • Users can enrich your data – “Harnessing collective intelligence of users” – Trust your users (Wikipedia) – Review and Recommend; Social Bookmarking; Folksonomies 19

Slide 20: Technology Trends • The Power of XML – Easier to exchange and process application independent data • Agile Engineering – Incrementally develop your product; short release cycles – Continually adapt to user needs – “The Perpetual Beta” • Maturation of the browser – XHTML, DOM, CSS, Javascript – Browser as platform, not just document viewer 20

Slide 22: JMIR “Medicine 2.0” Special Theme Issue (and Congress) www.jmir.org Gunther Eysenbach MD, MPH, www.jmir.org 22

Slide 23: www.medicine20congress.com, Toronto, Sept 4-5th, 2008 Gunther Eysenbach MD, MPH, www.jmir.org 23

Slide 24: Consumer / Patient Medicine 2.0 (“next generation medicine”) Full paper will appear as: Gunther Eysenbach. Medicine 2.0. Virtual J Med Internet Res 2008 (in press) Communities http://dx.doi.org/ 10.2196/jmir.1030 (peer-to-peer) DOI:10.2196/jmir.1030 Health 2.0 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 Gunther Eysenbach MD, MPH, www.jmir.org 24

Slide 25: Patient Portals and “PHR 2.0” Gunther Eysenbach MD, MPH, www.jmir.org 25

Slide 29: 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 Gunther Eysenbach MD, MPH, www.jmir.org 29

Slide 30: Blood Pressure - Chart Source: Jay Mercer Gunther Eysenbach MD, MPH, www.jmir.org 30

Slide 31: 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). Gunther Eysenbach MD, MPH, www.jmir.org 31

Slide 32: Read only EMR PHR “Tethered” PHR/ PAEHR Read+Write/Annotate EMR PHR “stand-alone” PHR PHR Gunther Eysenbach MD, MPH, www.jmir.org 32 © Gunther Eysenbach, CC-BY

Slide 33: “interconnected” PHR EMR PHR Different providers PHR EMR PHR Gunther Eysenbach MD, MPH, www.jmir.org 33 © Gunther Eysenbach, CC-BY

Slide 34: Records at Financial institutions Personal Finance Records Gunther Eysenbach MD, MPH, www.jmir.org 34 © Gunther Eysenbach, CC-BY

Slide 35: Gunther Eysenbach MD, MPH, www.jmir.org Tang et al, JAMIA 2006 35

Slide 36: Health Information is tightly protected EMR PHR Different providers PHR EMR PHR Gunther Eysenbach MD, MPH, www.jmir.org 36 © Gunther Eysenbach, CC-BY

Slide 37: What these models neglect: 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 Gunther Eysenbach MD, MPH, www.jmir.org J Med Internet Res 2007;9(2):e12 37 <URL: http://www.jmir.org/2007/2/e12/>

Slide 38: Another example for sharing personal health information Gunther Eysenbach MD, MPH, www.jmir.org 38

Slide 39: PHR 2.0 EMR PHR Other peoples’ PHR PHR Other peoples’ PHR EMR PHR Other peoples’ PHR Different providers Community Gunther Eysenbach MD, MPH, www.jmir.org 39 © Gunther Eysenbach, CC-BY

Slide 40: 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 • Incentives: – Consumers are not intrinsically motivated to enter / manage their information esp. if nobody reviews it – who will do that job? • Are people willing and able to take on that responsibility for their health (not all are)? Gunther Eysenbach MD, MPH, www.jmir.org 40

Slide 41: Will social networking provide additional mechanisms and incentives for people to manage their own health (and health information)? http://www.competeinc.com/news_events/pressReleases/168/ http://www.webcitation.org/5VuPjJxo5 Gunther Eysenbach MD, MPH, www.jmir.org 41

Slide 42: Conclusions: Implications for eHealth and Health Policy Gunther Eysenbach MD, MPH, www.jmir.org 42

Slide 43: 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) Gunther Eysenbach MD, MPH, www.jmir.org 43

Slide 44: 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!) Gunther Eysenbach MD, MPH, www.jmir.org 44

Slide 45: 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 45

Slide 46: 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 Gunther Eysenbach MD, MPH, www.jmir.org Patient 46

Slide 47: Apomediation defined • “disintermediation” through digital technologies = bypassing the gatekeeper, role of “human” intermediaries diminishes or changes • consumers and patients are finding new ways to locate relevant and credible information. • The agents that replace intermediaries in the digital media context may be called “apomediaries,” – Intermediaries mediate by standing “in between” (inter-) consumers and the services or information they seek, – Apomediaries “stand by” (apo-) and provide added value from the outside, steering consumers to relevant and high-quality information without being a requirement to obtain the information or service (Eysenbach, 2007). – While the traditional intermediary is the “expert,” apomediaries consist of a broader community including experts, parents, teachers, peers, and the like, who are networked in a digital environment, or networked tools (“Web 2.0”). Gunther Eysenbach MD, MPH, www.jmir.org 47 Eysenbach, http://hdl.handle.net/1807/9906

Slide 48: Dynamic Intermediation/Disintermediation/Apomediation (DIDA) Model (Eysenbach, 2007) Empowerment - decreased reliance on experts Knowledge Self-efficacy Apomediation replacing Autonomy the intermediary reliance on authorities/ Success experts Intermediary Failure 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 www.mitpressjournals.org/doi/pdf/10.1162/dmal.9780262562324.123 Gunther Eysenbach MD, MPH, www.jmir.org 48

Slide 49: 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 -Annotate entries - Symptom Diaries - Tailored Patient - Online Scheduling for Education Gunther Eysenbach MD, MPH, www.jmir.org Office Visits - Online Health Risk Quality ratings 49 - Waiting list management Assessments

Slide 50: www.medicine20congress.com, Toronto, Sept 4-5th, 2008 Gunther Eysenbach MD, MPH, www.jmir.org 50

Slide 51: Thank you! Dr G. Eysenbach, Email: geysenba@uhnres.utoronto.ca, Personal Homepage: http://yi.com/ey/ Gunther Eysenbach MD, MPH, www.jmir.org 51

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