"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.
  
  
• Inspire.com 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?

"Succeeding in online health" lunch meeting

The Mass. Technology Leadership Council is (as I type this) having a "lunch and learn" session titled "Patient, Heal Thyself: How to Succeed with Online Consumer Health Sites." When I first read the title, I heard "How to make a great online consumer health site," but hey, it's a high-tech business lunch, so it's about how to make a buck at it.

That's fine with me - the "helping people save their butts" community can use some infusions of cash, as investors take advantage of the reality that billions of people are entering the phase of life where they get serious illness and want to have their butts saved. Build great, useful online health resources, and the world will improve.

Here's a clue, investors: to build success, don't sit in a conference room figuring out what someone would want, and do NOT emulate the many web sites that say "Here is what we believe you should want to know." Just ask patients what they want to talk about.

I'm not being anti-establishment here, I'm being businesslike. Peer-reviewed medical journals may be full of reproducible experimental results, but (a) they may not answer what people want to ask, and (b) as happened in my cancer, the best current peer-reviewed journal articles may not be useful anymore. Ironically, people whose butts are on the line may find (as I did) that those are not reliable resources! They are necessary, to be sure, but they may be obsolete, and they may not even answer the questions people want to ask.

Tom Ferguson MD, founder of the e-Patient Scholars Working Group, felt strongly that we often have it upside down, when we have doctors decide what people need to hear. And as we move into e-health, I think he' s right: failure to ask patients "what do you want to hear about?" will be as deadly (business-wise) in online health as it was in any other industry that went through its "railroad" phase. (Can you say "Marketing Myopia"?)

It's a simple business principle - ordinary consumer market research. Do not start by asking the providers what they think we should hear. Use them as a highly valued resource, but don't start by asking them.