Task Force on Social Networking Software

Medical Library Association

Hyping “Health 2.0″

Filed under: Social Networking Applications, Current Awareness, TF — Molly Knapp at 8:31 pm on Monday, October 1, 2007

Today’s iHealthBeat reports on an article from the San Francisco Chronicle on the trend among online health startups to model themselves after social networking sites.

Health care startups are modeling themselves after YouTube and social networking sites such as MySpace in an effort to connect patients with each other and help them navigate overwhelming amounts of medical information available online.”

Several new resources are highlighted, including ICYou: “the YouTube of health care” where users can upload their own health-related videos; Daily Strength: anonymous, free online support groups for a variety of health issues & life challenges; and RateMDs.com, which allows patients to rate and read about their doctors and dentists.

While it’s great to see health startups adopt 2.0 technologies to more effectively connect patients with consumer health information and health providers, it will be interesting to see which sites will have staying power in the recently emergent field of “health 2.0” and who’s just in it for the money.

Then there’s the question of user-generated content in health care. While a mashup can show you who’s sick in your town, it’s only as good as the amount of information entered. Do we as health information professionals really want to point users to a wiki capturing the knowledge of, say, 300 epileptics, rather than medical experts? A recent article from the Economist.com explores that very question, pointing out a 2004 study from the British Medical Journal , where a panel of neurology specialists judged that only 6% of information posted in an epilepsy-support group was factually wrong. Interestingly enough, the very website under which this research occurred is no longer operational, and now leads to bunk searches from such nefarious dotcom sources as bizrate and slimstore.

And then there’s privacy issues. It’s great to build online communities of like minded individuals, but how much information can you share with an online community before someone’s HIPAA rights are violated? This is certainly an area of concern for medical professionals.

Content, privacy, staying power and community development. All issues ‘Health 2.0′ will have to address in order to, as the health 2.0 wiki puts it, “fundamentally redefine the healthcare industry along other “2.0″ lines”. I think certain trends in Web 2.0 work for consumer health. Certainly online communities are perfect for patients who may not be able to leave the house, or want to know a physicians bedside manner before making an appointment, and many authoritative resources have embraced technology such as podcasts, blogs and streaming video to serve up information. As for the user driven content in health care? Until Medlineplus rolls out a wiki, I’m staying wary.

4 Comments »

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Comment by Susan Mayer

October 2, 2007 @ 12:31 am

Great post, Molly. I’ve been watching these health 2.0 social networking sites for a while and I too have my reservations about them- I just haven’t been able to put my finger on exactly what isn’t quite right.

Maybe it is the slick ads or the patient supplied medical advice, though that is balanced by the fact that sites like daily strength are a lifeline for some. I am glad to have discovered a place that is watching them too.

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Comment by Ed Madara

October 4, 2007 @ 1:41 pm

Online self-help support groups have been helping members to both navigate and produce health information for well over 25 years. Since they are patient and/or family owned and run, they have much more staying power than the numerous for-profit enterprises that, despite their bells and whistles, fade back after their vast initial advertising monies are expended.

It was patients and their families who pioneered the first online support groups back in the early 1980’s on CompuServe and AOL. These member-run self-help groups were among the first to move from the for-profit online services to the early Internet. They were joined by many patients and family members who started their own websites and/or e-mail groups in the early 1990’s, often for disorders that previously had no national self-help group. Then hundreds of the traditional national and international self-help group organizations established their online support group presence, to supplement their face-to-face community support groups. For over a decade, a host of entrepreneurial websites have sought to imitate the real thing. But I think that most informed health consumers can tell the difference between a message board on e.g.”Daily Strength” and the real member-run self-help group that not only provide mutual support and patient-centered education, but also give members a true sense of belonging, control, and voice to a peer movement that very often effectively advocates for improved medical treatment, needed public and professional education, and research.

“Self-help support groups… the first and still the best interactive health education system.”

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Comment by Molly Knapp

October 4, 2007 @ 3:12 pm

Well said, Ed. Do you see longstanding online communities/support groups adopting using some of the more emergent tools (like streaming media/youtube) to communicate & provide support? Putting a face to the username seems like it would help in building even stronger support structures.

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Comment by Gina

October 14, 2007 @ 12:57 pm

I’ve been a member of an online support group for almost 6 months. i met people who deal with the same things i do, share and help.
i recommend this to anybody who can.
i go to a site called www.mdjunction.com but i know there are others as well.

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