The folks at PatientsLikeMe published an article in Nature Biotechnology describing how they analyzed the clinical benefit of an unapproved therapy by mining the relevant discussions on the networking site. Some people suffering from amyotrophic lateral sclerosis (ALS) have been experimenting with lithium carbonate and reporting their personal findings on PatientsLikeMe. After a bit of mining, compiling, and analyzing of the data regarding 149 ALS site users, PatientsLikeMe is reporting that their team found “no effect of lithium on disease progression”. This squares with findings of subsequent randomized trials that found the same lack of clinical benefit.
Here’s Jamie Heywood of PatientsLikeMe at TEDMED 2009 talking about the value of the social network for clinical discovery:
Press release: PatientsLikeMe Social Network Refutes Published Clinical Trial…
Abstract in Nature Biotechnology: Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm
Flashbacks: Jamie Heywood of PatientsLikeMe at TEDMED 2009; PatientsLikeMe Now Open to All
(hat tip: MassDevice)