Open Access News

News from the open access movement

Sunday, October 26, 2008

More on data sharing among patients

Barrett Sheridan, 'Open Wide...', Newsweek, October 16, 2008.

... Now that the health sector is slowly but surely beginning to embrace Web 2.0 tactics like social networking, sharing your health information with friends, family and even strangers may become an everyday occurrence. ...

That's why 19,000 people—the number of users on—have agreed to put intimate details, like whether a certain drug causes constipation, on a social-networking site. Collective knowledge—something that the Web, and in particular the social Web, is very good at enabling—allows them to put their disease in context. Am I taking a lower dose than other ALS sufferers? How normal is this side effect? Bringing health histories out into the open can provide answers to those questions, something that even doctors can't do.

It's also about gathering the collective wisdom, and making it available to researchers. "In the end, it's the same as open-source software," says Heywood. "If you can see all the information, you can correct the errors." Drug companies and doctors are far from infallible, and in this way the PatientsLikeMe community serves as a useful check. The site is, in effect, building an enormous database of patient data that can determine whether drugs and treatments are having the desired effect. ...

See also our past posts about PatientsLikeMe.