Health 2.0: patients-led research

Patientslikeme is a social network of patients created a couple of years ago. The patients shared their experiences with the disease to other patients. Health professionals can also participate. Now there are active communities on neuromuscular disease, amyotrophic lateral sclerosis, Parkinson's, fibromyalgia, mútliple sclerosis, diseases associated with mood (anxiety, depression, bipolar disorder ...) and AIDS. At present, more than 23,000 patients share their data.
At the end of 2007, there were some data that suggested that lithium could slow the progression of the evolution of the amyotrophic lateral sclerosis (Fornai published a paper in this topic in February 2008). From these data and using the platform Patientslikeme, Karen Felzer (a californian researcher in seismology and daughter of a patient with amyotrophic lateral sclerosis) and Humberto Macedo (affected amyotrophic lateral sclerosis, from Brasil) launch a study to see the effect of lithium in a broad group patients. This is an inquiry without "professional researchers". A research study organized by the patients themselves. In a short periode of time they recruited more than 200 participants, which folow-up for six months. In November 2008 published the results showing that lithium has no effect on the evolution of the disease. Patients have done a quick and transparent study.
This new model of patients-as-partners is a key element of Health 2.0