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The Center for Connected Health’s 2008 Symposium was held in Boston on October 27-28, 2008.  I gave a talk entitled, “Participatory Medicine: How User-Generated Media are Changing American Attitudes and Actions, Online and Off.” As always, the conversations I had with people after the speech were the best part of the event.

Lena Sorenson, RN, PhD, an Associate Professor at the MGH Institute of Health Professions, pointed out that my 7-word challenge focuses on doctors and should instead focus on “providers” (doctors, yes, but also nurses, therapists, and every other health care professional who cares for people). I updated my slides before uploading them to the Pew Internet site to reflect that important change.

Another line in my speech was a reading of the crowdsourced definition of participatory medicine.  Sorenson suggested (as have John Grohol & Charlie Smith, among others) that we change the term “participatory medicine” to “participatory health care.” What do people think about that? My instinct is to choose the catch phrase with the fewest words, but maybe I’m too drawn to bumper-sticker haikus.

Some other ripples and quotes:

During Clay Shirky‘s (awesome) presentation of how health care is being swept along by the current of social media, Judy Phalen of the Health e-Technologies Initiative asked a question about the uneven access we continue to see in the U.S. (and the hive of information that offline Americans are missing out on). She cited my points regarding the “low-tech majority” but I wished that I had had time to dive deep into the degrees of access data we have on safety-net populations since there are nuances. Shirky’s advice is to grab a paddle and try to steer yourself and your organization like a kayak in the current since there is no way to just put on the brakes and stop the movement. To extend that, Phalen (and others) are pointing out that there don’t seem to be enough paddles to go around.

Stead Burwell of Diabetic Connect was another person who talked about reaching out beyond the Tech Elite, which is so important in the service of people with diabetes. I’m fascinated by the work that he’s doing, along with his co-panelists Brian Loew of Inspire and Ben Heywood of PatientsLikeMe (whose demos were top-notch, maybe thanks to the dress rehearsal at Health 2.0) In a hallway chat, Stead and I agreed that this was a conference worth the travel time (and he came all the way from Utah!).

Since I end a lot of talks with the advice to “go mobile,” I thought I’d better attend the Wireless and Mobile Services panel, which focused quite a bit on the use of text and mobile chat to connect providers, patients and information. Robert Schwarzberg of Sensei got off what I thought was the best line: “People are so proud of their iPhones it’s like they hatched them” (smaller is not better anymore). But then Syam Buradagunta of the blue sky collaborative delivered this zinger during the Q&A: “I come from outside the health industry and I have to tell you, text is not cutting-edge.”

Howard Lewine of Harvard Medical School had (like me) run out of business cards by the end of the first day of the conference, but what I really wished I had on hand was a copy of Diana Forsythe’s book, Studying Those Who Study Us. He said that one of the more popular topics on the site he manages is about eyelid twitching — and people mainly want to know if it’s some early signal of a dread condition (it’s not). Forsythe wrote about how the number one question from recently-diagnosed migraine sufferers is “Am I going to die from this?” But the designers of a migraine information kiosk (yes, it was the 80s) didn’t ask patients what they wanted to know. They asked one doctor what he thought patients should know about their condition. Just checking: are we over that attitude yet?