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Web Strategies for Health Communication

Web Strategies for Health Communication. Dan Hoch, Ph.D., MD Neurologist/Epilepsy specialist, Massachusetts General Hospital, Boston, MA Director, Benson Henry Institute for Mind Body Medicine Digital Programs Associate Editor, AAN.COM. Tom Ferguson 1943-2006. Http://www.acor.org/tom.

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Web Strategies for Health Communication

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  1. Web Strategies for Health Communication • Dan Hoch, Ph.D., MD • Neurologist/Epilepsy specialist, Massachusetts General Hospital, Boston, MA • Director, Benson Henry Institute for Mind Body Medicine Digital Programs • Associate Editor, AAN.COM

  2. Tom Ferguson1943-2006 Http://www.acor.org/tom

  3. From a medical anthropologist’s point of view, much of what happens in the healthcare system we’ve all grown up with is invisible to most clinicians. Dianna Forsythe

  4. Clarification • Internet vs. Web • Web as platform • Other platforms- • Chat • Telepresence • Virtual worlds • Communication as ONE tool • Content • Conversations • Community • Other tools e.g. tracking software

  5. The MGH experience • Bring clinicians together using modern technology circa 1993—limited success • Bring patients together circa 1995- unlimited success • Groups formed in response to users, not at whim of providers • Content and direction of groups defined by users

  6. BrainTalk.org At it’s peak: • 50K registered users • 10 times that many viewers • Over 250 groups for discussion of various neurological disease and related issues

  7. The Epilepsy Forum: Who uses it? Sample was 155 primary posts from Feb 1995 through March 1997 Total posts = 3,881 Total hits =246,471

  8. What were the users doing?

  9. Public Epilepsy Forum Information Requested:

  10. Observations about online groups • Static content not a priority • The conversation is critical • Providers don‘t often take an interest • Providers are not usually excluded, but special interests, hidden agendas, etc, are NOT welcome. • Face to face encounters are often discussed as “lacking” especially with regard to knowledge transfer

  11. Some User Innovations on Braintalk.org • Club Avonex • People Living with Parkinson’s Disease • Brigadoon Island in Second Life • Dreams Island in Second Life

  12. Patientweb • “Regional” online resource • Closed, secure • All members were patients of Partners Healthcare Epilepsy treatment programs • About 120 users • Funded by NLM

  13. PatientWeb Resources • Content “approved” by providers • Discussion boards • Private messaging with providers • Feedback and ways to request added content • Synchronous Chat

  14. PatientWeb Observations • Widely appreciated and used • According to logs, some patients who didn’t even use it were extremely excited to have it available • Messaging with providers>discussion with other users>content>chat

  15. Social Web • Web 2.0 • Internet 2.0 ? • Integration of cellular technology • Remote sensor technology • “Presence” • GPS • Taging • Filtering

  16. “Strategies”- and Barriers to Entry Circa 1994 • Desktop computer ($) • Sever software ($) • Time and know-how ($$$) Circa 2009 • No computer • No Server • Time and Know-how ($) • Facebook? Free, Twitter? Free. Web Hosting? Free

  17. What are the barriers? • Physicians are users of personal electronics at rates commensurate with their socio-economic status • 60% of the population uses the internet to access health data • “Other” technology has become essential to medical care • From Telephones to ICU monitoring to Robotic Surgery So why is the field of medical care 20 years behind other industries in digitization?

  18. Perspective • 56 million Americans seek online information about chronic illness • Almost 80 million have become members of some kind of online support group. • Yahoo alone has 30,000 health related support groups Pew Internet and American Life, 2005

  19. Hoch’s totally subjective and unsupported list of barriers to adoption • #3- a (possibly) misplaced concern about privacy

  20. Hoch’s totally subjective and unsupported list of barriers to adoption • #2-Disruption of work flow • Present incentives, bureaucratic regulations and medical legal atmosphere discourage innovation/adoption

  21. Hoch’s totally subjective and unsupported list of barriers to adoption • #1- Devaluation of the skills for which physicians have been selected and valued

  22. Future Roles • Physicians • Nurses • Extenders and ancillaries • Medical librarians/Health communications • Patients and caregivers • Researchers • Private practice • Academic settings

  23. The Professionally Centered Medical Paradigm, 20th Century

  24. The e-Patient-Centered Medical Paradigm, 21st Century

  25. Interactive Web

  26. Anxiety and Depression Tools

  27. Cisco HealthPresence: remote delivery of care • HealthPresence unit: • TelePresence • Connected medical devices • Cisco employee clinic: • San Jose -- Los Angeles • Retail network

  28. Virtual Worlds: “Ignore them at your peril”-McKinsey & Company, Consulting The 3D Web is born! It won't be the proprietary Second Life ® owned by Linden Lab in 2015…Second Life will then become one out of many commercial, value-added providers…. Thinking otherwise would be like thinking 15 years ago that the (2D) Web will be proprietary, owned and run by a single company like Microsoft!)’ –M.N.K. Boulos – Senior Lecturer in Health Informatics at University of Plymouth

  29. Write down these sites: • http://slhealthy.wetpaint.com • http://healthcybermap.org

  30. Why the focus on Second Life ®? • Open Scripting Language • Intellectual property remains with creator • Extremely rich user created content • Size and popularity • Has markets and economy • Users are already very actively pursuing health-related activities

  31. HealthInfo Island • http://infoisland.org/2008/05/05/final-project-report-for-healthinfo-island-project-in-second-life-now-available/

  32. Second Health

  33. Palomar West Hospital

  34. What about the actual provision of care? • Role of users • Self Organizing • Organic growth Dreams Island

  35. What about the actual provision of care? • Role of users • Self Organizing • Organic growth Dreams Island

  36. Speed Builds

  37. Teaching the relaxation response in SL:Center for Connected HealthBenson Henry Institute for Mind Body Medicine

  38. Method-1 • Selected an existing 8 week course presently taught face to face • Developed a virtual area in SL space owned by CCH • Identified exercises and teachings from the face to face program for presentation in SL, and created the curriculum.

  39. Method-2 • Recruitment of present users of SL via in world and real world ads, as well as word of mouth • Face to face consent obtained • Validated measures filled out in face to face meetings before and after the 8 week program.

  40. Method-3 • Bi-Weekly meetings • Share our domains of knowledge • Greater usability • Authenticity of clinical practice • Explore the capability of the technology • Maintained end-user perspective • Acclimated team to virtual environment • Feedback on the real-world program translation

  41. Method-4 • We did not want to overly develop the environment with the technology • Providing a preconceived notion of a self-initiated practice • Only material that would have played a role during the face-to-face session

  42. Method-5 • To encourage group exchange • participants were granted creation privileges. • 24/7 access promoted the idea that the virtual space was a resource itself • group text-chat acknowledged as form of legitimate communication

  43. Tour of the space:

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