Society for Participatory Medicine
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Clinical Trial Data Rights?
“If you expose human beings to an experimental treatment, the public has a fundamental right to see the results of those experiments.” – Steven Nissen, chairman of the cardiology department at the Cleveland Clinic, quoted in The Sunlight Foundation’s account of Bray Patrick-Lake, an e-patient who has left with only questions after a clinical trial [...]
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The internet is changing healthcare – video from Reshape09
I wish I could have been at the Reshape2009 conference this month in the Netherlands. The Twitter buzz was stimulating, and the 6 minute opening video caused a lot of buzz. I didn’t get it all because it was in Dutch. Now, thanks to producer Lucien Engelen (@Zorg20, “Health 2.0″), here it is in English. [...]
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Cindy Throop’s personal story of Participatory Medicine
Like our contributor Sarah Greene, DC resident Cindy Throop was moved by Paulo Freire’s book, Pedagogy of the Oppressed. “The patient revolution must come from patients,” Cindy says. “We can educate and inform patients, but ultimately only patients can speak for themselves.” Here is her personal story of participatory medicine in action in her own [...]
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Journal of Participatory Medicine Launches at Connected Health
Press release for the October 22nd launch of the Journal of Participatory Medicine: Improving health care: Journal of Participatory Medicine will document methods that work for patient/provider collaboration Launch at Connected Health Symposium features essays by visionaries in health care, Internet, high tech, business, and sociology Patient engagement and patient empowerment are popular topics, with [...]
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A quote I won’t soon forget
Marcia Angell MD is a well-known, respected physician, long-time editor of NEJM. So it was a bit of a shock today when Amy Romano, blogger for Lamaze International, sent me this quote: It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of [...]
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Superheroes and rock stars at the Institute of Medicine
Update: National Cancer Policy Forum published a book based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF. The discussion portion of this panel was captured in a short video. ___________________ The Institute of Medicine’s recent [...]
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#WhyPM?
Note: if you do not use Twitter an explanation of this post’s title may be in order. #WhyPM is the Twitter hashtag we have been using collectively to announce the launch of the Journal of Participatory Medicine and to mention topics of interest from the Journal and the Internet. So what is Participatory Medicine? Simply [...]
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Why the Journal of Participatory Medicine?
Next week at the Connected Health Symposium in Boston, the Society for Participatory Medicine will launch its new journal. In keeping with the society’s spirit of physician-patient partnership, the Co-Editors in Chief are a physician and a patient: Charlie Smith MD (the primary physician of our founder “Doc Tom” Ferguson) and Jessie Gruman, Ph.D., who [...]
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A family becomes e-patients, of necessity — and succeeds
This is an inspiring story from several years ago of how a family became e-patients. When things got rough they were empowered and engaged, taking matters into their own hands. As the picture shows, there’s a happy ending, though it was rough along the way. Unlike millions in the US today, Gangadhar Sulkunte and his [...]
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Call for Submissions: Grand Rounds next week is on Participatory Medicine
We have wonderful news: next week Grand Rounds is devoted to Participatory Medicine. We are asking for your personal stories of how patient engagement has worked for you. It’s being hosted by Robin, the incredible patient who runs the Survive The Journey blog. She’s a member of the Society for Participatory Medicine (are you? Join) [...]
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