The NYT Magazine profiled a website called PatientsLikeMe.com, where people with certain diseases (MS, Parkinson's, ALS, and now mental illness) can document their treatment regimens and symptoms. All the information is disclosed voluntarily by the patients, and some have successfully used it, in cooperation with their physicians, to tweak their treatments. Predictably, there is already a call to regulate the site--for the patients' own good, of course.
Joe Heyman, a practicing physician in Amesbury, Mass., and the chair-elect of the A.M.A.’s board of trustees ... suggests that if physicians themselves aren’t sole stewards of the patient data — his first choice — then there should be some national standards or a law that covers a company like PatientsLikeMe that traffics in such data.Note the total omission of the role of patients as custodians of their own data. Here we have patients sharing data with other patients, aided by tools made available on a website. Participants on the site understand that they do not have a doctor-patient relationship of confidentiality, and the site clearly discloses that anyone may join the site and view the data they post there. The site also discloses that it may share the data with other entities. How is regulation going to do anything but make it more difficult to use the pooled data? The entire point of the site is to make an end run around the poky, regulation-bound medical research establishment.