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FDA's Social Media Gambit 'A Long Shot,' Says Patient Advocate

Lena J. Weiner, for HealthLeaders Media, August 13, 2014

The Food and Drug Administration wants to mine social media for information on adverse reactions to medications, but "listening to random chatter on the Internet," isn't the answer, says one patient advocate.

After more than a decade of ambivalence toward social media, the U.S. Food and Drug Administration is wading into the deeper waters of online communication platforms. In June, the FDA distributed a draft of long-awaited guidelines for industry when using social media.

Now the agency wants to employ listening technologies to improve the FDA Adverse Events Reporting System.

In late February, the agency quietly announced that it was looking for a contractor to take on the task of listening for adverse drug effects. It wanted to partner with an organization able to monitor social media sites, including Facebook, Twitter, LinkedIn, YouTube, Wikipedia for mentions of key words that would indicate negative side effects or other problems.

But depending on social media data mining for adverse event reports is a long shot, says Steven Nissen, MD, department chair of cardiovascular medicine and patient advocate with the Cleveland Clinic. He believes that monitoring consumer social media posts for adverse reactions will not bring the FDA any meaningful data.

"This is like listening to rumors," Nissen says, pointing out that a herd mentality often takes over online. "Someone tells you something, you tell someone else, it gets repeated as fact," he says, expressing concern that tweets about the negative side effects of a specific drug "bad" could cause widespread misinformation about it.

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