Don’t believe everything you read (about Health 2.0)

Health 2.0 is a hot topic, so no wonder a variety of companies are jumping on the bandwagon. Yesterday, iHealthBeat.org ran the story Social Networking Site Lets Patients Share Stories of Misdiagnosis based on an article in Wednesday’s HealthcareIT News Company launches ‘medical misdiagnosis’ social networking site. According to the HealthcareIT News piece:

Patients who have endured medical misdiagnoses have another social networking Web site where they can share their experiences.

Premerus, a Nashville, Tenn-based company that claims to be the nation’s only “diagnostic management” firm, has launched a Web portal – www.yourmisdiagnosis.com – as a way to help patients and their families address the impact of medical misdiagnosis.

Norman Scarborough, MD, Premerus’ medical director, said the company hopes visitors to the site will post their own experiences as a way of sharing insights about the impact of diagnostic errors on themselves, their families and the public…

He said yourmisdiagnosis.com offers opportunities to learn about several categories of misdiagnosis, read submissions from other consumers and submit anecdotes.

“Premerus has pioneered this online community to educate the public about misdiagnosis and provide support for patients and families,” said Scarborough. “It is often helpful to connect with others who may have encountered similar circumstances.”

It’s pretty obvious that the author didn’t bother to visit the so-called social networking website. If he had he would have seen that there is a total of 1 post, Misdiagnosed — Metastasized to Lung dated April 3, 2008. There are no comments or trackbacks (maybe this post will hit it!). Despite what Scarborough says about “several categories of misdiagnosis” there is in fact only one, “Misdiagnosis Experiences.” The Post Your Stories link is simply a link to an email address that a user can send a story to. There are no social networking features. It’s your basic, vanilla blog template with essentially no content.

Of course there is a big display ad linking to the Premerus website, which I guess is the whole point.

But before Premerus takes this criticism to heart and transforms the site into a real social networking site (or at a bare minimum gets some employees or PR people to post some stories, which you’d think they would have done already), let me be clear that I don’t think a social network for people who’ve been misdiagnosed is worthwhile in the first place.

I asked SimulConsult CEO Michael Segal, MD, PhD for his opinion:

From my experience, if people have been mis-diagnosed they identify with the smaller community of people who have the disorder that they actually have, not with the larger community of people who have been mis-diagnosed. A good example of such smaller communities is the Save Babies Through Screening foundation, which has all sorts of horror stories of mis-diagnosis, some of which I used in my article on the Differential Diagnosis of Child Abuse.

It would be great if there were a forum for the general class of mis-diagnosed people, but it seems more likely that one could be successful with a federation of smaller sites about particular disorders. Such disease-specific groups tend to work with professional societies to educate doctors to prevent mis-diagnosis in the future. We’ve seen some interest by such groups in providing cases for the Child Neurology Society’s case-based education program for residents.

May 2, 2008

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