...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....
PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago.... They’re not typical patients, in the sense of waiting for advice from a doctor. They are, rather, co-practitioners treating their conditions and guiding their care, with possibly profound implications. “People who use it will live longer; people who don’t won’t,” boasts Jamie Heywood, the provocative co-founder of PatientsLikeMe. “That’s evolution.” ...
The company, which is financed by private investors, eschews advertising; the business model instead seeks to exploit the value of the databank itself. By and large, this means working with pharmaceutical companies. The company has had discussions with several drug firms to sell anonymized patient data on various symptoms and treatments. They have also recruited PatientsLikeMe members to be participants in clinical drug trials. Ultimately, the company expects that the data will generate insights with considerable scientific — as well as economic — value....
The most striking notice is the company’s Openness Philosophy, a manifesto posted prominently on the site.
“Currently, most health-care data is inaccessible due to privacy regulations or proprietary tactics,” it declares. “As a result, research is slowed, and the development of breakthrough treatments takes decades. . . . When you and thousands like you share your data, you open up the health-care system. . . . We believe that the Internet can democratize patient data and accelerate research like never before.” ...
“I know it sounds like really personal information, but it’s not like I’m putting my phone number up,” says Jennifer Jodoin, a hotel manager in Palm Beach, Fla., who has changed her M.S. medications based on information gleaned at PatientsLikeMe. “I’m not posting my address and saying, ‘Come on by.’ It’s an exchange of information to get help and to give help.” ...
Posted by
Peter Suber at 3/25/2008 04:15:00 PM.
The open access movement:
Putting peer-reviewed scientific and scholarly literature
on the internet. Making it available free of charge and
free of most copyright and licensing restrictions.
Removing the barriers to serious research.
I recommend the OA tracking project (OATP) as the best way to stay on top of new OA developments. You can read the OATP feed on a blog-like web page or subscribe to it by RSS, email, or Twitter. You can also help build the feed by tagging new developments you encounter.
