CaringBridge, CarePages: community support sites

This weekend the Associated Press is publishing a story about CaringBridge and a similar site, CarePages. It relates the experience of several users, including my community and family during my cancer adventure last year (see my CaringBridge journal.).

Newcomers: if you’re looking for great resources for self-education on how to be an effective consumer in today’s healthcare system, here’s a post from my CaringBridge site a few weeks ago: …


RESOURCES FOR INTERNET PATIENTS

As regular readers know, during this past year I’ve become a strong advocate of all the ways patients can improve their outcomes and their experience, becoming active participants in their care, especially by using the Internet.

Here are some resources:

  • The E-Patients blog: E-patients are “empowered, engaged, equipped and enabled.” This blog covers a wide range of topics about the new world of participatory medicine. If you’re a patient or family in need, educate yourself by reading the wonderful “white paper” (manifesto) available on that site.
  • A community support site, like CaringBridge. It saves you an enormous amount of time corresponding, and lets your supporters check in anytime instead of keeping up with emails.
     To see how it works, you can get the whole year’s transcript (1/30/07 – 1/30/08) as a free download (one big file or single chapters), and read while you’re sitting in waiting rooms. :)
  • The New Life of e-Patient Dave is my blog about … well … my new life. Last year I was at the end of my mini-golf game, but I got a free replay. The New Life blog tells what I’m doing with that replay – mostly sharing what I learned during my adventure.

On the New Life blog I’m starting a beginner’s guide to participatory medicine. It’s my effort to share what I learned last year, with the intention that others can take a shortcut. In particular I recommend the chapter about “the five pillars of participatory medicine.”

Those sites have many links to other web sites. Do your own exploring – see where it takes you.

And by all means, get out there and PARTICIPATE. In the world of blogging, that means you click the Comments link (or Guestbook, on CaringBridge), and enter questions or comments.

Be an e-patient: Ask what you want to know; say what you think.

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Comments

6 Responses to “CaringBridge, CarePages: community support sites”

  1. Susannah Fox says:

    Thanks, Dave. Did you happen to see that Scientific American highlights some studies this month showing that blogging is good for you?

    See:
    http://www.sciam.com/article.cfm?id=the-healthy-type

    I heard about it on this new blog:
    Mothers with Cancer

  2. No, I hadn’t heard about it. What priceless text:

    Scientists (and writers) have long known about the therapeutic benefits of writing about personal experiences, thoughts and feelings. But besides serving as a stress-coping mechanism, expressive writing produces many physiological benefits. Research shows that it improves memory and sleep, boosts immune cell activity and reduces viral load in AIDS patients, and even speeds healing after surgery.

    A study in the February issue of the Oncologist reports that cancer patients who engaged in expressive writing just before treatment felt markedly better, mentally and physically, as compared with patients who did not. …

    Excellent tip. Thanks.

  3. Paul says:

    I feel like http://posthope.org should be listed as an option here. It is a great alternative to the above listed services.

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