At this week’s TED Conference, the social networking site PatientsLikeMe announced that, thanks to a grant from the Robert Wood Johnson Foundation, it would build a platform that will improve users’ ability to track their chronic diseases and share data with medical researchers. A big part of this initiative will involve developing open standardized measurement systems that are easy for patients to use. Only a few hundred of the thousands of diseases in existence have such systems, and with them data that’s currently being entered in an ad hoc fashion can be formalized for research.
What’s the Big Idea?
PatientsLikeMe has a user base of almost 200,000, all of whom have relinquished their privacy — and gone around built-in medical privacy regulations and proprietary measuring systems — to share sensitive data records in order to learn more about their illnesses. PatientsLikeMe research director Paul Wicks says the open platform will allow researchers “to understand these diseases and learn about them — not for curiosity, not for publication, or for profit, but to take them apart one by one, and consign them to the history books.”