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“Let Patients Help”: Nurses and e-Patients

March 30, 2012

 

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?

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3 comments

  1. I have always believed that empowering patients would lead (or force) the way to better quality healthcare and ultimately better outcomes. When I was working as a peds infusion nurse I used to teach the kids to not let anyone touch their CVC’s without seeing them wash their hands! I used to also teach them to properly clean their CVC access area and make sure anyone that was going to use it did the same. I actually had an ED nurse call up to our unit and ask for me as she was quite irritated to have a 5 year old tell her to wash her hands! The kiddo told her that her nurse in DTU told her to always make sure her “buddy” was well taken care of! I took the tongue lashing and continued my same teaching to parents and children as long as I was in that position.
    Social media sites and Consumer action groups that point patients towards quality are one way to ensure caregivers follow best practice guidelines.
    I’m all for it!

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  2. Machiavelli cited raising new ideas as one of the most dangerous activities possible: it’s so easy to find flaws or possible flaws, and most people would rather things stay the same – familiar and thus safe – forever.
    Instead of endlessly speculating about how things might go with new techniques, why not try some experiments with it, watch carefully and learn from actual experience? Books, I’ve read, were originally considered a dangerous development by some early critics: our more vulnerable citizens would surely lose touch with reality as they sat idle, reading: the horror! most of our fears don’t come to pass, and we’d be better served focusing on those that do. I’d also suggest reading Clay Sharky’s fine book on Social Media and start finding ways to make best use of these new tools, because arguing against them is surprisingly similar to arguing against the future: it will come regardless of our views, and we would do better to adapt than to try, and surely fail, to avoid it.

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  3. Thanks for a well reasoned piece…. the nurse she cites (letter writer Palmer) is concerned but I believe her view is protective paternalism, which always means well but can have unintended consequences. (I’d welcome discussion from Ms Palmer, of course – I don’t like talking behind someone’s back! Social media enables this dialog.)

    It seems to me that if we want to help patients have the best possible outcomes, the question becomes this: Should we handcuff the strong to “protect” the weak?

    Again, I welcome dialog.

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