There’s a great story by Thomas Goetz in yesterday’s NYTimes magazine about PatientsLikeMe, an online community for people with chronic diseases.
I’d read a little bit about patientslikeme before, but didn’t fully recognize the depth of their ambitions to collect and analyze patient data.
One of the most interesting things about PatientsLikeMe is the eagerness of patients to share their detailed data, and that the same cultural currents of openness that that have been driving social media seem to extend to traditonally private, personal clinical data. There is also a virtuous cycle of transparency – the more data people share, the more disease gets ‘demythicized’ and the taboos against discussion are broken.
It is easy to see the risks in patients trying to take off-label prescriptions into their own hands, and the opportunity for excessive optimism in interpreting uncontrolled trials and anecdotal advice. Transparency, however, is ultimately a good thing and the only way to ensure reliable data. The lack of transparency in traditional clinical trials is unfortunate, and results in missed research opportunities and too much potential for spin, truthiness, and quenching of undesirable results. Individual patients own their medical information, and ought to have the power and tools to publish, aggregate, and analyze data about themselves and each other.
Goetz also blogs at Epidemix, and has posted a related WNYC interview there.