Practicing Patients

Practicing Patients
By THOMAS GOETZ
Published: March 23, 2008
PatientsLikeMe, an Internet start-up, creates information-rich communities for the chronically ill. Is it the next step forward in medical science — or just a MySpace for the afflicted?

"...There are a little more than 7,000 Todd Smalls at PatientsLikeMe, congregating around diseases like Parkinson’s, multiple sclerosis (M.S.) and AIDS, all of them contributing their experiences and tweaking their treatments. At first glance, the Web site looks like just any other online community, a kind of MySpace for the afflicted. Members have user names, post pictures of themselves and post updates and encouragements. As such, it’s related to the chat rooms and online communities that have inhabited the Internet for more than a decade.

But PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience..."