I think participatory medicine is what Eric Raymond calls a “plausible promise”: something big enough to inspire interest yet achievable enough to inspire confidence.

Reforming health care is too big for most people to grasp; creating spaces for participatory medicine is not. E-patients are already finding, sharing, and mashing up health information online. If you want to take advantage of the internet’s capabilities, find ways to make it easier for people to find and share information that you and your organization hold.

Last week’s World Congress event provided an opportunity to introduce the concept of participatory medicine to a new audience. Here’s the text of my speech:

The Pew Internet Project is a non-partisan, non-profit research organization, funded by the Pew Charitable Trusts. We study the social impact of the internet, which means we measure who’s online and what they do, but also who is not online and why.

The Pew Internet Project’s current estimate is that about 75% of adults and 95% of teenagers in the U.S. go online. Half of American adults have broadband access at home. 75% of American adults have a cell phone and many are using their cell phones to connect to the internet. 80% of internet users look for health information online. We have come to call them “e-patients.”

It is important to note that e-patients are not only going online for health information; they are also consulting medical professionals. Fully one-half of e-patients living with chronic conditions talk to a doctor about what they find online, compared with one-third of other e-patients.

The Pew Internet Project did a study last year looking at how people interact with various information sources when they are dealing with major decisions. Eight in ten respondents who recently needed health information said they turned to a professional for advice. About half turned to friends and family; 46% turned to the internet. In other words, professionals were the dominant source for people with health questions, which is not what we see in any of the other topics covered in the survey: education, taxes, Medicare/Medicaid, changing job status, or Social Security. For those topics, the internet or a government agency played much more important roles than did professionals.

For those internet users who are supplementing their doctor’s advice with health information found online, search is the first stop for most e-patients. Search is the de facto second opinion in the United States and search results often include user-generated content such as blogs, discussion groups, and Wikipedia.

Social media is not just stumbled upon by searchers; it is a starting point for many people. This trend is hard to measure since a lot of user-generated content has become “wallpaper” technology for many people – they absorb it without noticing it. But community is powerful and always has been. Technology makes this basic instinct easier to fulfill.

Clay Shirky has written about how communications tools don’t get socially interesting until they get technologically boring. He also writes about the power of interactivity and participation. Here is my current favorite story from his blog:

I was having dinner with a group of friends about a month ago, and one of them was talking about sitting with his four-year-old daughter watching a DVD. And in the middle of the movie, apropos nothing, she jumps up off the couch and runs around behind the screen. That seems like a cute moment. Maybe she’s going back there to see if Dora is really back there or whatever. But that wasn’t what she was doing. She started rooting around in the cables. And her dad said, “What you doing?” And she stuck her head out from behind the screen and said, “Looking for the mouse.”

Here’s something four-year-olds know: A screen that ships without a mouse ships broken. Here’s something four-year-olds know: Media that’s targeted at you but doesn’t include you may not be worth sitting still for.

That is where most health care is these days, stuck in the broadcast world when it could be transformed and transformative. E-patients know that health care that’s targeted at you but doesn’t include you may not be worth sitting still for. As e-patients are “looking for the mouse” in health care, I’d like to suggest that one possible answer is the concept of participatory medicine.

Participatory medicine is the space in between “doctor knows best” and “leave the e-patient alone” to find their way on Wikipedia.

I think participatory medicine is what Eric Raymond calls a “plausible promise”: something big enough to inspire interest yet achievable enough to inspire confidence.

Reforming health care is too big for most people to grasp; creating spaces for participatory medicine is not. E-patients are already finding, sharing, and mashing up health information online. If you want to take advantage of the internet’s capabilities, find ways to make it easier for people to find and share information that you and your organization hold. Don’t hide your best information behind a subscription wall. Do publish in HTML or XML instead of in PDFs. Do open your site to comments or provide a way for people to email you. Do get your top executives to participate, not just observe.

Dr. Kvedar laid out the capacity challenge in a very compelling way in his opening remarks. Pew Internet Project research and the medical literature show that e-patients can fill in the gaps for things like diabetic education (see Diabetes Mine), weight loss (see Pediatrics, March 2008), and asthma management (see BeWell Mobile Technology). E-patients can even act as watchdogs on drugs (see The People’s Pharmacy).

Design for what could be. Choose openness at every fork in the road. Join e-patients in making the choice to find and share information. Join the conversation that is already happening online. Join e-patients in pursuing participatory medicine.