How online patient communities make money from patient data

Websites that encourage patients to share their experiences are growing in popularity.

But how reliable are they, and for those that are profit-driven, how do they make their money?

A recent story in the New York Times attempts to answer those questions.

There are plenty of benefits that these sites offer, like providing patients with a virtual support group of sorts. That’s something that most find tremendously helpful and is missing from more traditional health channels.

But patients have to guard against being exploited for profit.

Consider PatientsLikeMe, a popular, for-profit, online patient community. They make their money by selling “health data, gathered from member profiles but with certain identifying information removed, to drug makers and others for scientific and marketing research.”

Because some of these forums don’t have unbiased physician moderation, they are vulnerable to influence from drug company marketers or those pushing unproven therapies. And,

unlike television viewers, who can immediately spot direct-to-consumer drug ads, consumers on some health sites may not fully understand that they could be subject to marketing or marketing research, even if they have read the site’s privacy policy.

And while PatientsLikeMe is transparent about how they market patient data, patients have to be aware of the balance between sharing their experiences with other patients and being used for profit.


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