Unknown effects? (Image: Plainpicture)

WHAT does the internet know about your drugs that your doctor doesn’t?

It turns out that a trawl of online medical message boards can unearth medicines’ hidden downsides.


A team in New York City and Jerusalem mined more than a decade of posts on medical forums for stories about patients’ experiences with different medications. They say their algorithm could have detected bad reactions not uncovered by clinical trials, years before they came to the attention of the US Food and Drug Administration.

“Social media is like an almost infinite-sized focus group,” says Oded Netzer at Columbia University in New York City, part of the team behind the project. “We don’t ask anything. We just listen. We are a fly on the wall, listening to what consumers and patients are saying.”

Drugs and medical devices sometimes have unexpected side effects, even after testing in lengthy studies. The FDA already has a system that enables patients, physicians and companies to report their problems, and has piloted a scheme to mine official medical records. But Netzer and colleagues at the Hebrew University of Jerusalem wondered whether they could retrospectively spot signs of bad reactions, simply by looking at earlier chat forum posts.

The researchers scoured messages posted in four popular medical forums, such as WebMD message boards, since 1999. They trained an algorithm to understand the sometimes casual or typo-ridden posts and to match the different names a common drug might go by.

They also had to teach it to grasp the slippery syntax of different writers. When one person posts, “It gave me a headache,” for example, that “it” could refer to their illness, one of several drugs they’d taken, or something else entirely.

The resulting algorithm showed promise. In one experiment, it uncovered signs of memory loss and confusion associated with statins, a class of cholesterol-lowering drugs, as early as 2003. The FDA didn’t add these risks to the drug label until 2012.

In another experiment, posts about the antidepressant Wellbutrin – which had its label amended in 2009 to include warnings about agitation and hostility as possible side effects – also pointed to these problems years ahead of the FDA. The research will be presented next month at the Knowledge Discovery and Data Mining conference in Sydney, Australia.

The idea of using text-mining as a tool for finding adverse drug reactions has already caught on with the FDA.

Last year the administration kicked off pilot program Mini-Sentinel, to mine official medical records databases for clues.

Netzer thinks that social media should be added to the list of places they look. “It’s a very, very powerful monitoring tool,” he says. “There’s a large array of patients that willingly talk about their conditions and about the use of different drugs online.”

“Social media is a very powerful monitoring tool. Patients willingly talk about their conditions”

Social media is “the voice of patients in the wild”, agrees Trevor Cohen at the University of Texas Health Science Center in Houston.

The research shows the benefits it might have over traditional reporting methods or even mining medical literature.

This article appeared in print under the headline “Web posts help to spot drugs’ side effects”