Information Therapy and Health 2.0: What tension?

This is a guest post by Michael Segal MD PhD.

The Health 2.0 Meets Ix conference in April was seen even by its organizers as presenting a false dichotomy between self-organizing communities and doctor-written material:

Health 2.0 Meets Ix brought together people determined to change health care. We don’t all agree exactly how, but we share a common vision of putting people in charge of their care, and delivering them the tools to do that. Many people cried BS on the debate format and to be fair it was a little stylized. There are tensions between Health 2.0 and Ix but the commonalities far outweigh them and that’s obvious.

Our article Hypokalemic periodic paralysis – an owner’s manual (which will be posted on the redesigned Periodic Paralysis Association site) provides a great example of this “tension” being overblown.  The article originated in discussions on the Periodic Paralysis Association listserv.  The community had invited me, as an MD PhD involved in expanding the clinical spectrum of what was initially believed to be a rare muscle disease with relation to the broader public, to participate on the listserv and interact with the community of people with the muscle disease.

As time went on, the community expressed a desire to have an “Owner’s Manual” written by MDs involved in the area.  The vision of the “Owner’s Manual” was to provide information to empower people with the disease to understand their disease and explain it to the typical doctor, who is not aware of the disease.  The community assembled the questions but asked that the MDs write the answers, both to aim for accuracy and to make the resulting article one that would be convincing both to doctors and to often-skeptical family members.  These issues are particularly important in this disease because flare-ups are often dismissed as “hysterical paralysis.”  Several patients acted as reviewers of the article, and one of the authors is an MD who has the disease, assuring that the article reflected both the doctor and the patient perspectives.

This article originated with a “Health 2.0” community, yet the community decided they wanted “Information therapy.” The “tension” seen by experts in the area was not an issue for them at all.  They were able to put together a complete mix to get the article done: physicians, patients, and a physician/patient.  This illustrates the rule of thumb that I’ve enunciated, that the most useful resources come from getting physicians and patients to work together closely to come up with the insights and resources that are most useful.

It also illustrates how the “tension” between Health 2.0 and Ix falls away in practice.

July 7, 2009

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