I’m not sure how or why this is “news” in today’s Washington Post, but apparently patients are logging on to the Internet to get emotional support and exchange information about their health (and mental health) concerns. Who would’ve thunk it? The Philadelphia Inquirer, for one, who wrote a very similar article in 1995 (yes, that was 12 years ago).
The personal stories in the article are good, and it helps you realize how people are still discovering that the Internet can be a wonderful, supportive resource beyond reading the latest on your favorite celebrity or sports scores. It helps promote the fact that millions of people throughout the world have turned to the Internet for such online health support.
But I do have to wonder at how much research the reporter did when she writes things like:
But until recently, people with disorders that are rare have often had difficulty connecting with others who suffer from the same condition. Judicious use of e-mail and the Internet can ease the sense of isolation and smooth the path to learning how to live with their disease, as Henderson soon discovered.
This is simply factually incorrect. The first rare disease groups sprouted on the Internet back in the late 1980s. In fact, rare diseases and disorders that were stigmatized were the first support groups to form online, precisely because of the difficulty in finding others who had the problem.
The fact that some companies are now looking for ways to profit from these rare diseases is what’s new and newsworthy, not the fact that they’ve existed online in other venues for years (which is ignored in the article). The article would have been more balanced (and possibly informative) had it looked at other Web 2.0/Health 2.0 companies in this space as well, such as Revolution Health or Daily Strength. And it would’ve been especially nice to see the tie-in and recognition of the old school organizations who have been doing this for a long, long time (like the Association of Cancer Online Resources, which has many rare cancer support groups).
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A DC-based, 2-year old online community development company and National Organization for Rare Disorders, Inc. (NORD) have a few suggestions on what to look for in online support groups, with nuggets like this:
Check the bona fides of any site you’re considering signing up with.
The more trusted the site, the more trustworthy the information you’re likely to glean from it. The more than 2,700 groups listed in NORD’s index of organizations have been vetted for compliance with NORD’s rules on ethics, profitmaking and more.
“Some groups that are very popular are not in our database because they have strong political agendas,” Putkowski says.
False: There’s no research to suggest that this is actually true, although it’s one of those things we all believe. And “trust” is a fairly nebulous concept, especially when paired with “online support group.”
NORD suggests you check with NORD, because NORD has a database of organizations it has sort of vetted (I say “sort of,” because none of these organizations have been vetted for their ability to provide a safe, secure and trustworthy online support community).
Left out of the article is that it appears NORD was really only suggesting checking its database for rare diseases support group organizations. You won’t find mainstream health groups in their database.
Read the full article: Log On For Support