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?
Writing in the New York Times Magazine, Thomas Goetz describes what happens when patients band together on the Internet to share their most intimate medical information, from symptoms to drugs and dosages.
… 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. The 7,000 members of PatientsLikeMe, in other words, are beta testers – they may be the vanguard of how we all will care and treat our rÃ©sumÃ© of chronic diseases. 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.
… Of course, turning patients’ experiences into usable data raises a host of questions for medicine. When patients take the reins of their own treatment, what role do doctors play? What’s to keep patients from misinterpreting the streams of data and finding false hope – and what’s stopping them from embarking on unproven and even risky treatments or dosages? And what happens if the real-world information at PatientsLikeMe contradicts the clinically proved protocols of medical science?