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Connect, commiserate, talk about treatments for your disease // create a web of words // leave a trail for researchers to comb for clues.

Between the Lines

By Brandon Keim // Fall 2009
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Every day, thousands of devotees log on to the patient community They check up on one another, ask for advice and tell stories of their illnesses. Though most have never met in person, they’ve come to know one another well, and they often share very specific experiences. “Day 5 of Tarceva, and I noticed about 4 pink welts on the back of my tongue,” writes a woman identified as Sandy45 in a post to a cancer group’s discussion forum. “Actually my entire mouth burns when I drink soda. Doesn’t look like any of the pictures I have looked up.”

A woman who goes by the handle Elaineb2 writes back, “I saw my oncologist Thursday and this is just one of the symptoms of Tarceva. I also have peeling fingers on both hands and my Onc. is real pleased as this (as well as the rash) shows that the Tarceva is doing its job. Just take one day at a time and TRY not to worry. LOL,” she concludes with the online shorthand for “laughing out loud.”

For Sandy45 and Elaineb2, both coping with advanced lung cancer, trading information about treatments and startling symptoms has become part of a reassuring routine. What they learn from each other, and from other members of their online group, may go beyond what they’re able to find through other sources. If they checked the safety information on the manufacturer’s site for Tarceva (erlotinib), for example, they’d learn only that “bullous, blistering and exfoliative skin conditions have been reported, including cases suggestive of Stevens-Johnson syndrome/toxic epidermal necrolysis, which in some cases were fatal.” Nowhere on the official site would they discover the notion, relayed from Elaineb2’s oncologist, that such side effects in a mild form might be a welcome sign.

Members of Inspire take part in discussion groups on hundreds of diseases and conditions, and it’s obvious how much participants depend on one another for information, inspiration and support. But all of their online “talk,” which generates some quarter-million words a day, may have another use as well. It’s a giant pool of glimpses into patients’ everyday lives—glimpses that aren’t gathered with the tools traditionally employed by researchers, who conduct studies according to strict observational protocols, with painstakingly calibrated surveys. Still, some scientists have begun to explore ways to mine this ever-deepening vein of online content.

By using language- and pattern-analyzing software to search and distill the cascade of words on social networking sites, researchers may be able to identify trends and signals, such as repeated mentions of a certain drug in connection with a particular side effect or treatment success. “Listening” to thousands of patients as they discuss treatments, side effects and experiences with their diseases might even help scientists come up with hypotheses worthy of study. “There’s a tremendous amount that goes on in a patient’s daily life,” says Frank Moss, director of the Massachusetts Institute of Technology Media Lab, an emerging-technologies research group that helped create one disease-related networking site, and a founder of the cancer drug company Infinity Pharmaceuticals. “They’re trying off-label drugs, different diets, different exercise, different lifestyles. That information isn’t easily available to clinicians, but the cure to the disease may lie within it.”

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Abuses of Power

Social networking sites, unchecked by authorities, are fertile ground for misinformation and unscientific experiments.

A Sense of Community

Patients on medical networking sites share symptoms and support. Here, they also share their stories.


1. “Learning From E-Patients at Massachusetts General Hospital,” by John Lester et al., British Medical Journal, May 15, 2004. A summary of how people behave and what they share in online medical forums, and an early recognition of Internet communities by the medical establishment.

2. “PatientsLikeMe: Consumer Health Vocabulary as a Folksonomy,” by Catherine Smith and Paul Wicks, AMIA Annual Symposium Proceedings, November 2008. An overview of how members of online patient community PatientsLikeMe talk about disease, the article describes how their informal language structures can be classified—a necessary first step in analyzing them.

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