Joy Jacobson is a health care journalist and the poet-in-residence at the Center for Health, Media, and Policy at Hunter College, where she teaches writing to nursing students.

In the March issue of AJN, a letter writer responds critically to my news report, “Leveling the Research Field Through Social Media,” published last October. My report summarizes some recent trends in medical research, including patients using Facebook and other social networking sites to push for the funding of research into treatments that the science may not support. I go on to discuss PatientsLikeMe, which describes itself as “a health data-sharing platform” designed to “transform the way patients manage their own conditions.”

The letter writer objects to the idea of patients sharing their own data online. Can vulnerable, mentally ill patients, she asks, consent to participate in online research? Is enough being done to safeguard them? “I suggest we disseminate information to nurses that helps them steer patients away from Web sites such as PatientsLikeMe,” she concludes, “until programs and processes are in place to better protect the public we’ve pledged to serve.”

Several PatientsLikeMe researchers responded to this nurse’s points; a synopsis of their responses was included along with the reader’s letter in the March issue. “What we are doing is new and as such should be scrutinized frequently and rigorously by peers to ensure we are meeting the ethical standards one would expect for our patients,” they write. “We believe our […]