Commons-based peer production and the medical information monopoly

A decade ago I consulted with a federal health agency on the redesign of its website. They wanted to use the web to make more health care information readily available to more people, but they didn't have much to offer. My suggestion was to leverage what we now call commons-based peer production, which then was mostly happening on the Usenet. The feds were deeply conflicted about that. They knew people were exchanging lots of useful information in newsgroups. But they also knew there was a lot of quackery, and they couldn't imagine themselves separating the wheat from the chaff. It was a valid concern. There was no way that they, alone, could patrol the likes of and highlight the most useful advice for, say, people recovering from knee replacement.

Over the years I've known a few folks who've gone through that procedure. Last night I spoke to a friend who had it done recently. He told me he found lots of helpful online resources about the surgery itself, as well as about the rehab process. And he's collected them into a kit that he's been sharing with others who are headed down the same chute. But he had to do all this on his own. Nobody on his medical team pointed him to any of this stuff.

Medicine is, among other things, a kind of information monopoly, as are other professional fields including IT. It's inevitable that peer production will challenge these information monopolies, and medicine is a particulary interesting test case.

Watching for signs of change, I've been following medical blogs and podcasts. One that caught my ear recently was this interview with J. Scott Armstrong, a Wharton School professor whose interests include scientific peer review and transparency in medicine. At one point he discusses his own experience with prostate cancer. This guy is clearly not a typical patient. He regards his personal physician as an adviser who points him to relevant medical literature, discusses it with him, and helps him reach decisions.

At one point, faced with possible prostate cancer, Armstrong's doctor referred him to a specialist because his PSA (prostate-specific antigen) was at level 5. The specialist told him that because it was level 5, he should have a biopsy. "Well yeah," Armstrong says in the interview, "I can read." He expected the specialist to add value -- to customize that general and widely-known recommendation in ways that accounted for his particular circumstances. That didn't happen.

Not everyone is willing or able to dig into the medical literature. But some are, and they can publish what they find for the rest of us to discover. My friend is happy with his new bionic knees, and he wants to blog the resources that were helpful to him. In particular, since rehab is so crucial to successful outcomes, he's thinking about putting up some videos showing how he uses his cycling machine.

Over time, as more such resources accumulate online, the web's natural peer review and reputation effects will kick in. Health care folks can't vet all this stuff, but they shouldn't have to. People will vote with their links for the information that's valid and useful. What will health care folks do then? Two things, I hope. First, work with us to gather and refine useful sources. Second, use their expertise to guide our interpretations of those sources.

This shouldn't always require an office visit, by the way. In one of the Stanford podcasts (at this iTunes-only URL, sorry), Daniel Sands gives a wonderful high-energy talk about how and why we need to augment face-to-face physician/patient communication with asynchronous modes like email. We don't know how to bill for such services yet, I suppose, but it's time to figure that out.

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