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 drug safety at the FDA much to Forbes dismay—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.

3 Responses to Online communities helped psoriasis sufferers

  1. José Luis says:

    The communities of patients are vital in the management of complex diseases, doctors often despise the contributions of patients.

  2. Lisa Emrich says:

    I agree that we'll be seeing many more of these types of reports. When done right, online patient communities truly can make a difference in other patients' lives, but I don't agree that doctors despise these contributions.
    However, what about the patients who find a less than informative or supportive community? Would they be more or less likely to participate in an attitudinal survey about their experience and outcome?
    I do believe in the power of the unique support which patients can give each other, primarily because I am active in a few 2.0 communities. One person even referred to me as a Patient Opinion Leader in an interview for an article. Sounds flattering.
    In the meantime, I'll be watching how Health 2.0 continues to develop. (I only wish that I could attend one of the conferences sometime.)

  3. Jennifer says:

    The ePharma Summit this week covered some of the sites that allow patients to network together and join online health communities. Their insights are shared here:

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