• by Erik Sass , Staff Writer @eriksass1, June 16, 2015

In addition to its main purposes of disseminating cat pictures and getting stupid people fired, social media can actually do useful things like advancing the state of medical knowledge. In the latest such initiative, the U.S. Food and Drug Administration has joined forces with PatientsLikeMe to gather information about drug side effects and adverse reactions.

The partnership, still in an experimental phase, will explore the potential application of user-generated information from the social network, which caters to people with medical conditions, to risk assessment as part of the regulatory review process. The FDA will use patient-generated data from the social network for qualitative information about drug reactions to complement its quantitative data gathered from clinical studies.

The collaboration will give the FDA access to far more of this qualitative reporting than has typically been available for drug studies, according to PatientsLikeMe co-founder and president Ben Heywood: “Most clinical trials only represent the experience of several hundred or at most several thousand patients, making it impossible to anticipate all the potential side effects of drugs in the real world.”

By contrast PatientsLikeMe can provide tens of thousands of patient-generated data points about drug reactions. With over 350,000 members, to date the social network has collected over 110,000 adverse event reports for over 1,000 medications.

User-generated data from PatientsLikeMe has already been used in studies by the Institute of Medicine, the National Institute of Health, the Centers for Disease Control and Prevention and the U.S. Department of Health and Human Services, according to the social network.

Previous studies have suggested Twitter may be a useful resource for patient-generated data about adverse drug reactions, but the Twitter content presents considerable analytical obstacles including a great deal of extraneous information and the 140 character limit for entries, whereas PatientsLikeMe is closely focused on issues related to health and medications, with no character limits.