In 2008, Italian researchers reported the results of a small unblinded human clinical trial suggesting that daily doses of lithium could slow the progression of the neurodegenerative disease amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Two years later, however, the finding was refuted by larger, carefully controlled, double-blind, randomized trials in North America and again in Italy. One could argue that that’s simply how science works and correcting the academic record sometimes takes a couple years. But according to a study out yesterday in Nature Biotechnology, scientists could have gleaned those counter-results much earlier had they turned to social networking instead of relying on traditional trial design.

After the original 2008 report came out, some members of the online forum PatientsLikeMe decided to share their experiences with the drug. The website created a platform for data collection, and around 150 people with ALS who experimented with lithium self-reported their disease progression. PatientsLikeMe researchers then developed an algorithm to match the study subjects to around 450 controls who didn’t take the drug. After a year of treatment, the internet-gathered data showed no benefit of lithium on disease symptoms including swallowing, walking and breathing.

“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,” PatientsLikeMe co-founder and study author ”https://www.patientslikeme.com/members/view/71">Jamie Heywood said in a press release. “Patients win when reliable data is made available, sooner."

But that’s not the only advantage of self-reported patient data. Earlier this year, researchers used information gathered from five PatientsLikeMe disease communities to document the widespread off-label drug use for two mood-altering medicines, demonstrating how portals like these can be used to better track and understand drug usage in real-time. And last year, scientists from 23andMe, the California genetic testing company, showed that DNA data could be combined with online surveys to identify new genetic association for common traits and, ultimately, perhaps medically conditions.

Self-reported medical data “has tremendous potential,’’ 2001 Nobel prize winner Lee Hartwell, president and director emeritus of the Fred Hutchinson Cancer Research Center in Seattle and chief scientist of the Biodesign Institute’s Center for Sustainable Health at Arizona State University in Tempe, ”https://online.wsj.com/article/SB10001424052748704489604576283010994997034.html">told the Wall Street Journal.

For more on how people can be empowered to contribute to the research enterprise without signing up for clinical trials, check out our 2010 news feature on one company’s plans to make medical genetics more participatory, as well as our video from February on the world’s first participatory laboratory.