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

Web Strategies for Health Communication

Http://www.acor.org/tom

Tom Ferguson1943-2006

From a medical anthropologist’s point of view, much of what happens in the healthcare systemwe’ve all grown up with is invisible to most

clinicians. Dianna Forsythe

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

Clarification

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

The MGH experience

At it’s peak: 50K registered users 10 times that many viewers Over 250 groups for discussion of various

neurological disease and related issues

BrainTalk.org

Who was using theForum?

Caregivers 49%Patients 34%

Unidentified 16%Health Prof <1%

The Epilepsy Forum: Who uses it?

Sample was 155 primary

posts from Feb 1995

through March 1997

Total posts = 3,881Total hits =246,471

What were the users doing?

Posting aQuestion

80%

Making anAnnouncement

13%

Other 7%

Public Epilepsy Forum Information Requested:

Questions Asked (Observed) %

Treatment Options 31

Natural History 28Shared Experiences 20Medication Side Effects 18

Other 3

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

Observations about online groups

Club Avonex People Living with Parkinson’s Disease Brigadoon Island in Second Life Dreams Island in Second Life

Some User Innovations on Braintalk.org

“Regional” online resource Closed, secure All members were patients of Partners

Healthcare Epilepsy treatment programs About 120 users Funded by NLM

Patientweb

Content “approved” by providers Discussion boards Private messaging with providers Feedback and ways to request added

content Synchronous Chat

PatientWeb Resources

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

PatientWeb Observations

Web 2.0 Internet 2.0 ?

◦ Integration of cellular technology◦ Remote sensor technology

“Presence” GPS Taging Filtering

Social Web

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

“Strategies”- and Barriers to Entry

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?

What are the barriers?

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

#3- a (possibly) misplaced concern about privacy

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

Hoch’s totally subjective and unsupported list of barriers to adoption

#1- Devaluation of the skills for which physicians have been selected and valued

Hoch’s totally subjective and unsupported list of barriers to adoption

Physicians Nurses Extenders and ancillaries Medical librarians/Health communications Patients and caregivers

Researchers Private practice Academic settings

Future Roles

The Professionally Centered Medical Paradigm, 20th Century

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

Interactive Web

Anxiety and Depression Tools

Cisco HealthPresence: remote delivery of care

• HealthPresence unit:• TelePresence• Connected medical devices

• Cisco employee clinic: • San Jose -- Los Angeles

• Retail network

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

Write down these sites:

http://slhealthy.wetpaint.com http://healthcybermap.org

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

HealthInfo Island http://infoisland.org/2008/05/05/final-project-report-for-healthinfo-

island-project-in-second-life-now-available/

Second Health

Palomar West Hospital

What about the actual provision of care?

Role of users Self Organizing Organic growth

Dreams Island

What about the actual provision of care?

Role of users Self Organizing Organic growth

Dreams Island

Speed Builds

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

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.

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.

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

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

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

Tour of the space: