Wednesday, March 5, 2008

"Succeeding in online health" lunch: take-aways

My take-aways from the speakers at today's lunch-n-learn:

  • Lisa Neal teaches the world's only (she believes) university course about online medical communities, at Tufts Medical School. I am very glad to have met this woman - we'll be talking.

  • is an ACOR-like set of online communities. (ACOR is specific to cancer; Inspire mostly isn't.) They offer it free to not-for-profit organizations. Nice!
  • Amir Lewkowicz (of Inspire) raised an issue brought up by e-Patient member Susannah Fox at this week's Health 2.0 conference in San Diego: what about the people around the world who aren't online like you and me? How does our movement reach them?
  • A huge part of the discussion (today and elsewhere) concerns "safety" of the information people acquire by researching online. I put "safety" in quotes because it's a big mistake to think that well-vetted certified MD-approved info is the best path to safety: every bit of misleading or useless info I got last year came from well-vetted web sites. The only indication of quality that I found was whether other "consumers" of the information (patients and their families) say the info is reliable.

  • I stood up and remarked that we all use car ratings guides when we buy a car, and that the same will surely happen with online consumer health info.
  • John Lester of SecondLife (also one of the e-Patient Scholars, whom I met last weekend in Texas) addressed the safety question in a characteristically fun/ny way: "If fire were invented today, there's no way it would get on the market. You'd have to say 'okay, we won't make it too hot, and we'll add warning labels...' If you'd told someone 200 years ago that we'd be roaming around in these things that have hundreds of little controlled explosions of fire every minute, they'd think you're crazy." Amen, bro. Things that seem insanely impractical today may only seem that way because we're two generations too young!
  • I've always wondered what real use can be made of SecondLife - the classic "is it just a toy?" question. Well, it's so richly experiential that someone has used it to show others what a psychotic hallucination is like. Others are using it for first-response training. Autistics are using it to develop their social skills.
  • Kids are using virtual gaming to attack cancer cells - an online manifestation of the well-known practice of visualizations as a way of fighting cancer. (One kid I read about visualized little sharks going through his veins eating cancer cells. Now, I suppose, he could create that happening "in-world," as the SecondLifers say.)
Last weekend at the e-Patient Scholars Working Group retreat, I had the profound privilege of being with Kevin Kelly, co-founding Executive Editor of Wired and author of New Rules of the New Economy. He blew our minds by pointing out that in 2007 the Web became just 5,000 days old.

The first 5,000 days brought web sites, Google,
Travelocity, blogs, webcams, Napster, Facebook, SecondLife, and a lot more. Imagine: what will the next 5,000 days bring?


  1. Hi Dave,

    Thanks for coming to the "Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites" lunch and learn yesterday. It was great to hear your comments. I remembered you mentioned you had a blog so here I am.

    I just wanted to let you an others know that they can health Susannah Fox's entire presentation at

    It is pretty interesting.

    Take care,

    Amir from Inspire

  2. It was great to meet you, Dave, and thanks for the post about the session, also for your insights during the session. Perhaps you can write about them here in your blog!


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