Monday, March 24, 2008

PatientsLikeMe -- a new paradigm?

Interesting story in Sunday's NYT Magazine. It's about a new website,, that goes beyond the usual online disease support groups to actual data collection. Currently offering communities for amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), multiple sclerosis (MS), HIV, "mood," and Parkinson's, the site gathers data on treatments and side effects and turns it into aggregate data that users can use to see how their health status, symptoms, and treatment plans compare with those of others. The company was named a Top Health IT Innovator last year; has named them one of "the next disruptors," the 15 companies that will change the world.

More than being just a "support-plus" site, though, PatientsLikeMe could have some important implications for the way health care works. First, and most obviously, it puts patients in a much more active role--and not just in terms of adhering to their doctor's instructions, but in investigating whether their prescribed regimen could be improved. Second, it could be a parallel track to current ways of doing research: outside academia, outside clinical trials, bodies of data being built up. There's already a DIY trial on lithium for ALS going on among members. One key difference here is that the subjective data patients consider salient could be different from, and not included in, existing study designs. Third, PatientsLikeMe is a for-profit company ... it's seeing pharmaceutical companies as its financial lifeblood, which raises the usual privacy (etc.) concerns.

Overall, the model could challenge our current ideas of who does what in health care; the validity of data from outside the research establishment; how IT and the internet can better serve health needs -- beyond just transferring existing processes from paper to electronic media; and the need to protect personal health information and whether the general public is, or should be, afraid of this kind of radical openness ... lots to think about.

1 comment:

Kelly Hills said...

While I'm a bit hesitant about the pharma involvement, I'm all for the rest of it. Having a chronic disease myself, I'm very aware of the support groups that exist for my condition, and participate in forums where we do trade information about what works and what doesn't (and that includes doctor information, not just medications). Without those groups, I wouldn't know about a lot of advances that are coming down the line for my particular condition, or have the hope that a cure might be found.

Then again, openness is never much of a concern for me - I've favoured a very David Brin-ian information wants to be free, and will be, attitude for most of my adult life. :-)