PatientsLikeMe: A different sort of website for chronically ill people

This article in the New York Times profiles a new website PatientsLikeMe.com which is more than your typical online community for people with particular illnesses. As someone who struggled with chronic illness for a long time, I am all too familiar with the affirmation that comes with finding people who are struggling with the same (often undiagnosed or improperly diagnosed) illness that you are - and with the deep sadness, heartache, drama, and misinformation that often comes with people who have not been adequately treated by the traditional Western medical establishment. This new website, though, goes a step further than just providing a space for people to congregate, support, and share information anecdotally. From the Times

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.

I think this will be particularly helpful for people whose diagnosis is with something fuzzy or not well understood - perhaps even give people with a collection of symptoms and no exact diagnosis to see that “Yes, there are people who have similar symptoms and X treatment has worked with X number of people.” This is so much more helpful than “My cousin tried this doctor in Upstate New York and she said yada yada yada,” which is very much how people with undiagnosed chronic illnesses often find relief (or not). It would be interesting to see if there is a place to include diagnosis in the tradition of Chinese medicine, since many find that this often speaks better (and better addresses) their problem when Western medicine can’t come up with much. I sort of wish that it wasn’t, in part, funded by pharmaceutical companies, but I must say that I prefer that to it being a pay-site. Although ads might be better than funding by pharma. That said, if it helps them develop better, less harmful, more effective treatments for people…the better, I suppose