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Online communities helped psoriasis sufferers

In one of the first articles of this type I've seen published in a mainstream medical journal, in this case the Archives of Dermatology, there's some evidence that being in an online community helps patients. This study is from our friends at the Partners Center for Connected Health which is run by Joe Kvedar, himself a dermatologist. (No I haven't spoken to Joe about it and I don't know if his specialty is why they picked on psoriasis—other than it’s a very nasty condition).

Anyway, the key take-away from an attitudinal study of over 200 patients in five online communities is that:

Almost half (49.5 percent) of participants perceived improvements in their quality of life and 41 percent perceived improvements in psoriasis severity since joining an online support community.

And all this from a treatment with no costs and no side effects. Even Syd Wolfe — new head of committee member of drug safety at the FDA much to Forbes dismay— (Editor's note: That'll teach us to read Forbes! Goldstein got it right. and yes it is that Sydney Wolfe) would approve!

I expect that as Health 2.0 tactics go mainstream we’ll hear a lot more about these types of cases.

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  2. What is psoriasis? What causes psoriasis? Is there a cure or treatment for psoriasis? Psoriasis is a skin condition, it is a disease, but it is not contagious. The name comes from the Greek word for “itch.” It can be hereditary, caused by external influences (allergic reaction to foods or the environment) and sometimes stress. 4-5% of the population is known to be affected, and this number is growing. However, it is suspected that 1 in 5 people have some form of psoriasis either descripts or none descript.
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  3. Psoriasis is a disease whose main symptom is gray colored patches on the skin which are red and inflamed underneath. In the United States, it affects 2 to 2.8 percent of the population, or between 5.8 and 7.

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  6. Just another study in a decade’s worth of research in the literature showing the benefits of online self-help support communities (which significantly pre-date the marketing-hyped Health 2.0 world).

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  8. Response rate was unknown, but what data they could collect, between 12-25%, not ideal. I suspect a strong response bias (n was only 260 in the end), and this is far from a representative sample. I would not draw any big conclusions.
    Brad

  9. Correction Matthew: Wolfe is just on the committee as a member, not in charge. Big difference.

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