Social media could prove to be a valuable method for gathering real time information on patient treatment to help determine drug effectiveness sooner, according to a new study of patients with ALS.

PatientsLikeMe, the world's leading online health data sharing platform. reveals the results of a patient-initiated observational study refuting a 2008(1) published study that claimed lithium carbonate could slow the progression of the neurodegenerative disease, amyotrophic lateral sclerosis (ALS). PatientsLikeMe, a health data-sharing website with more than 100,000 patients and 500+ conditions, announces its study results in the journal, Nature Biotechnology.

"This is the first time a social network has been used to evaluate a treatment in a patient population in real time," says ALS pioneer and PatientsLikeMe Co-Founder Jamie Heywood. "While not a replacement for the gold standard double blind clinical trial, our platform can provide supplementary data to support effective decision-making in medicine and discovery. Patients win when reliable data is made available, sooner."

After the original claim was published by the Proceedings of the National Academy of Sciences, 348 ALS patient members reported their off label use of lithium on PatientsLikeMe. Just 9 months later at the International ALS/MND Symposium, PatientsLikeMe presented preliminary results that lithium was not having an observable effect on the disease progression of these patients. The results were revealed before any of the formal follow up trials enrolled patients.

PatientsLikeMe developed a novel algorithm designed to match patients who reported taking lithium with a number of other ALS patients that had similar disease courses. By using a matched control group, PatientsLikeMe was able to reduce biases associated with evaluating the effects of treatments in open label, real world situations and improve the statistical power of the study making each patients contribution more meaningful.

Heywood adds, "The rising costs of healthcare and increasing complexity of managing disease require new approaches to comparative effectiveness research and real time management of disease. While there is much work to do, we have demonstrated a patient-centric approach that provides dramatic cost and time advantages."

Nature Biotechnology has made the final publication, titled, "Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm," available for free to the public on its website.

 (1) (Fornai et al., "Lithium delays progression of amyotrophic lateral sclerosis." 
Proc Natl Acad Sci U S A. 2008 Feb 12;105(6):2052-7.)