San Francisco Chronicle - July 13, 2008
Cherilyn Parsons

On finding support groups in Second Life:

The SLHealthy wiki (slhealthy.wetpaint.com) is probably your best and most comprehensive resource for Second Life health support groups, organizations and locations. It's maintained by a group of librarians who have done an incredible job of cataloging the listings. The wiki was founded by Perplexity Peccable, in real life a medical librarian affiliated with the University of Michigan.

Following the link in the left-hand column to the "File Cabinet," you'll get a page of links to a very long list of support groups and more, although you can also find the listings by searching. (Try a search for "cancer" to see how many cancer support groups we've found in Second Life.)

On "official" Second Life health support groups like those operated by the American Cancer Society versus groups begun by individuals who have suffered from a particular ailment:

We have not reviewed the information provided by groups, though in several instances, we've decided not to list information about a group because it's clearly unethical. One example is a pro-ana (or pro-anorexia) group, and another was a for-profit "organization."

I sure understand professionals' concerns about the validity of information provided in peer health support groups, but it's important to understand that they meet anyway, with or without our support and listing. It's caveat emptor, as it is everywhere else - on the Web, in the media, it's all about questioning and evaluating health information.

It may be surprising, but from my own observations of people in health support groups, the discussion does get round to whether information is valid or not, surprisingly often. I think we all are coming to realize that the goal has to be empowerment, so that the individual can be a true partner in his or her health care - informed, skeptical, involved, well-supported within the health care and personal communities.

A support group for health does a lot of things, or it can. You can share your experiences with others who have experienced the same problems; commiserate over the entire confusing, frustrating hassle of diagnosis; compare adverse effects of medications; laugh about your co-workers; cry - it goes on and on. It becomes about much more than health information, and I'm convinced it's often a really important way to find community, especially if you have a relatively rare disease.

On evaluating whether a particular group is right for you:

If you're thinking about joining a group, I suggest you use the same radar you might in the real world: Do you feel comfortable? You should feel perfectly OK about asking questions you have.

With regard to health information from groups, I'd recommend you use what you learn as you might use information from Wikipedia: a great resource with terrific anecdotes that may help you understand more about a health condition, but not necessarily authoritative. And it might not necessarily apply to you, with your own unique health history, medications, and more. It can be a wonderful starting point and provide you with questions you can explore on your own, discuss with health care professionals and check out with a medical librarian. Someone should come up with a Latin corollary for caveat emptor that means "always ask, always learn"!

On the evolution of the support group environment in Second Life:

It seems to me that from the earliest history of the Well, people have used this technology to reach out for support. I am tremendously encouraged by what's happening.

In Second Life, we've been able to begin bridging the trust divide by setting up opportunities where support groups meet casually with health professionals for Q&A sessions, contact specialists for talks or even collaborate with them in creating displays. An example is the AIDS/HIV support group that asked to meet with a nutritionist about AIDS medications and diet; another, a terrific meeting between a diabetes support group and an internal medicine physician. My role was liaison, reference librarian for both doctor and laypersons (I searched PubMed for some of the latest evidence-based therapies and have taught laypersons to search PubMed and other resources), and facilitator.

I have not experienced these things outside of Second Life. This is boundary-crossing, experimental and potentially very rich, very amazing.

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Always watch for outdated information. This article first appeared in 2008. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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