PatientsLikeMe leads crowdsourcing for patient outcomes

PatientsLikeMe has made new progress in giving patients a voice in drug research. The Cambridge, MA-based company, a provider of patient social networking communities, has grabbed a $1.9 million grant from the Robert Wood Johnson Foundation to spearhead an effort that puts patients at the center of developing health outcome measures, which have traditionally been the domain of medical experts.

Yet as PatientsLikeMe Co-founder and Chairman Jamie Heywood tells Bio-IT World, the new approach to developing outcome measures from his company should lead to measures that reflect the things that are important to patients. This method of crowdsourcing for outcome measures comes amid other efforts to tap the input of patients and others to improve clinical studies, including Transparency Life Sciences' FDA-approved study of an MS treatment designed with an online platform.

At PatientsLikeMe, patients have been contributing data on their diseases for years and building data sets that pharma companies have used to inform their drug research. With the new outcomes platform, Heywood wants patients to collaborate on developing outcome measures that better evaluate the efficacy of new drugs, including elements that matter to those taking the meds, Bio-IT World reported.

The company, which revealed the effort during a TED event, aims to release a beta version of the new web-based research platform in the near future.

This effort should garner some interest from drugmakers seeking new ways to advance new therapies that make meaningful dents against diseases, showing a willingness to listen to patients along the way. Merck ($MRK) and Novartis ($NVS) are among a dozen or so pharma groups that have already collaborated PatientsLikeMe, and other drugmakers have signed on with other tech outfits to gain information on what patients are saying about treatments.

- see the Bio-IT World article