[Recently] NPR’s popular program “Talk of the Nation” covered something we discuss often: How e-patients find information and find each other online. Featured guests were Pat Furlong, mother of two boys with a rare disease who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here. The audio is here.
It’s a good combination: Pat speaks from the heart about her own experience and her passion for community, and Susannah, as usual, speaks as an “internet geologist” — as she once put it, “A geologist doesn’t have opinions about the rocks, she just observes and describes them.” Susannah spoke about her newly-released report “Peer-To-Peer Healthcare,” about which she recently wrote here.
Listener comments begin around 13:00. Examples:
— A woman describes how she started a Facebook group for her painful chronic condition (ankylosing spondylitis) and it’s grown into a website, HurtingButHelpful.org. (Spoonies, take note!) What drove her to create a patient community? “There’s no one else who can understand what I’m talking about.”
— The mother of a newborn with a heart defect found similar parents online. Hearing their stories — and even seeing an upsetting photo — helped her prepare for the surgery.
— On the downside, the daughter of an ovarian cancer patient said her now-cured mom keeps going online to patient communities and getting scared by what she reads. (Host Neal Conan’s observation: “There other parts of the computer that can be addictive, and I guess this one can, too.”)
It’s heartening to hear coverage of online patient communities, including the risks and challenges, in a respected outlet like NPR. (Timecovered it, too, a year ago.) And there’s no equal for the reality check of Pew’s data. Some patient activists suggest (and some people fear) that the Internet “frees” patients from doctors, but Pew says that’s not what people are doing. Read more »
ABCNews.com has posted a great new piece by Dr. Roni Zeiger entitled, “The Biggest Wasted Resource in Health Care? You.” Subtitle: “How Your Internet Research Can Help Your Relationship With Your Doctor.” It’s well reasoned and clearly written, and continues the trend we cited a month ago, when Time posted Dr. Zack Meisel’s article saying that patients who Google can help doctors.
— Dr. Zeiger’s article title parallels what Dr. Charles Safran told the House Ways & Means Subcommittee on Health in 2004: Patients are “the most under-utilitized resource.” He was talking about health IT, quoting his colleague Dr. Warner Slack, who had said it many years earlier. I often quote it in my speeches for the Society for Participatory Medicine, asserting that it applies not just to IT but to all of healthcare.
— Dr. Zeiger is on the editorial board of our Journal of Participatory Medicine and is Chief Health Strategist at Google. He gets the power of patient engagement deeply and clearly. Last fall he posted a prediction that in the future it might be malpractice for doctors not to prescribe a patient community to help you help yourself with your conditions.
Prediction: Googling and patient networks will become essential as we move toward the practice of shared medical decision making (SMDM). I know firsthand that the information my kidney cancer community gave me about coping with treatments went well beyond what my excellent clinicians could offer. (We’re starting a series on SMDM. The first entry was in December.)
Well, here’s a treat: Dr. Charles Smith, a founder of the Society for Participatory Medicine, recently gave a lecture at Duke entitled, “How to Become a More Effective e-Patient.” Here it is, in four video segments.
“Charlie” (as we all call him) is a wonderful guy. He’s co-editor-in-chief of the Journal of Participatory Medicine and was Doc Tom Ferguson’s physician. He’s been walking this walk for many years, and here he shares his personal advice –- not just for patients, but for health professionals who want to learn this participatory thing.
(The “Joe & Terry” he mentions are our founders Joe and Terry Graedon of People’s Pharmacy, longtime Duke associates.)
An audio-only version is also available (see below). Read more »
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