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Rewriting Life

Open Up

Sharing ­information about your health can advance medical science and improve society.

After my wife and I moved from the U.K. to Boston in 2008, Facebook allowed us to keep in touch with friends back home. Yet we read only a stream of good news. We heard about weddings, birthdays, and nights out, not cancer scares, depression, or the baby not brought to term.

This selective, rose-tinted sharing is common on social networks—except for the one I work on, PatientsLikeMe. There, people with conditions from bipolar disorder to HIV anonymously or publicly share intimate details of symptoms, treatments, and health outcomes with thousands of people they’ve never met. We have published studies showing that this sharing helps our users become better at managing health problems. We have also shed new light on the effectiveness of rarely studied treatments, such as generic drugs and off-label indications.

These people have proved that there are real benefits to sharing the bad news. I think even more good could be done if everyone, not just those with serious conditions, were to share more health information.

This story is part of our September/October 2011 Issue
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Admittedly, this would take some persuasion. One practical problem is creating a context for such sharing, whether inside ordinary social networks or in dedicated spaces such as PatientsLikeMe. But there’s also a more fundamental issue: the deep-seated belief that talking about illness diminishes us in the eyes of others.

We recently conducted a survey asking more than 4,000 PatientsLikeMe users which parts of their social circles they had informed of their diagnosis. Patients with diseases that are visibly obvious, like ALS or Parkinson’s disease, had spread the bad news most widely, to family, friends, and neighbors. However, people with conditions whose symptoms are more hidden—such as mental illness, HIV, or epilepsy—were much less likely to reveal their diagnosis. Real-life neighbors and connections on social networks were rarely informed.

The roots of our taboos about health are complex, but humans seem to have a “default privacy setting” that conceals illness from others when possible; it’s overridden only when our defenses crumble and the state of our health is plain for all to see. Society can erect similar barriers. Author and oncologist Siddhartha ­Mukherjee tells us that Fanny Rosenow, a breast cancer activist in the 1950s, was unable to advertise her support group in the New York Times because the words “breast” and “cancer” were both taboo. We have made huge strides in medical openness since, but we still have far to go. We should allow and encourage people to be more open with the bad news about their health. Not only will we advance medicine, but our society will become less likely to harm or discriminate against people with health problems.

Paul Wicks is one of this year’s TR35 and a researcher at PatientsLikeMe, a social network for sharing information about life-changing illness.

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