No Need to Suffer in Silence

June 2, 2009

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by Lisa Neal Gualtieri, PhD, Adjunct Clinical Professor, Tufts University School of Medicine
With 74% of Americans online and 80-84% of online American using the Web for health information (Pew Internet and American Life and Harris Polls), many pain sufferers are online. But far more people “lurk” than participate actively in health Web sites. Hence I was interested in a blog post that included a slide from Josh Bernoff of Forrester Research from HealthCamp Boston, which shows that people with chronic pain conditions are in the “misery loves company” quadrant and may be “most likely to benefit from and to participate in online social networks”.
What are the implications of this for the design of health Web sites? And can pain itself ever be an impediment to full participation?

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4 Comments Add your own

  • 1.    Alexandra Carmichael  |  June 2nd, 2009 at 5:56 PM

    Interesting questions, Lisa! We have found that the chronic pain patients tend to want to protect their privacy and anonymity, so designing websites that allow patients to control access to their data is important. And yes, pain is definitely an impediment at times – a common trigger for migraine patients is looking at the computer screen. On the other hand, for other chronic pain or mood disorders, being online is a great way to connect, not feel so isolated, and often just pass the time until the pain is gone.
    Thanks for raising this issue, on behalf of myself and the millions of others (mostly women) who live with chronic pain conditions.
    Alexandra Carmichael
    Co-Founder, CureTogether.org

  • 2.    Nickie  |  June 3rd, 2009 at 8:44 PM

    You raise some interesting questions. I’m coming at this from the perspective of living with chronic pain for six years and also studying social work currently. I have personally found that online participation in some forum, either a forum designed specifically for people with pain or just through public blog entries which often attract other pain sufferers. I think the benefits come from the writing, the information and support and the ability to be distracted.
    I do find that the pain can be a barrier to participation. I think this depends on the person and how pain affects them. For me, it’s hard to focus when I’m in a lot of pain. I find that pain impacts my language abilities.
    One other barrier I come across is that many pain related sites are not always desiggned with web site accessibility in mind. I know this barrier can affect anyone who needs to access the web differently (using screen reading software, alternative input devices or voice activation software). Since chronic pain can be a part of other disabilities or be a disability in itself, I wonder if patients would benefit from increased accessibility of these sites through increased participation.

  • 3.    Gluten Allergy  |  August 12th, 2009 at 4:25 PM

    It’s amazing how a small problem in the spine can cause joint and bone inflammation in the fingers and toes. Has anyone ever compared the peripheral nervous system to the Internet? Like the Internet, the nervous system exists all over the place: It conveys body-wide messages, but watch out, it can also cause body-wide pain.

  • 4.    kara  |  January 17th, 2011 at 7:30 PM

    I think the only issue with that kind of model is two fold.
    1. For every piece of sound medical advice/knowledge etc shared, you have to filter thru a mountain of terrible and often irrelevant information. If your desperate and in pain it is going to be difficult not to want to dry everything you read about, let alone filter what your reading.

    2. People have a tendency to fore-go actual good medical advice in favor of a miracle offered up by some anonymous IP in the cyber world.

    I’m not sure sitting behind a screen for hours on end is a great way to manage pain any how, need something to help take your mind off of pain and sitting hunched over a keyboard ain’t it.

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