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 established processes and procedures are consistent with these expectations.”
While I think the letter writer’s urge to protect patients is laudable, I find unrealistic her suggestion that nurses “steer patients away” from social media, especially in this age of e-patients and participatory health care. As I understand it, e-patients are not reckless. Rather, they’re “enabled, equipped, engaged, and empowered.” But even those who aren’t knowledgeable might want to participate more fully with clinicians and researchers alike in seeking the best care available.
One of the brightest stars in the e-patient firmament is Dave deBronkart, much better known as e-Patient Dave. When he was diagnosed with advanced kidney cancer several years ago, he discovered, through an online community at the Association of Cancer Online Resources, an experimental treatment he credits with saving his life. Patients are the most underused resource in health care, Dave says in his TED talk from last year (see above). Watch the video, if for no other reason than to hear this cancer survivor get the audience chanting, “Let patients help! Let patients help!”
Nursing leader Joanne Disch has written a nursing perspective on participatory health care, but I’ve not been able to find much else on nurses’ views on this revolution in the health care model. What are your thoughts about it?