e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
New at the Journal for Participatory Medicine
From Kathleen O'Malley, managing editor of The Journal of Participatory Medicine: We've got some good intellectual exchanges going on at The Journal of Participatory Medicine. The three latest Commentaries we posted have garnered several worthwhile comments attached...
Six US health systems to share data
For those who believe in the power of facts, some wonderful news from CMIO, 12/15/10: "Six of the nation's leading healthcare systems — Cleveland Clinic, Dartmouth-Hitchcock, Denver Health, Geisinger Health System, Intermountain Healthcare and Mayo Clinic — will join...
“The Difficult Science”: series by Kent Bottles
Kent Bottles MD is one of the best healthcare thinkers I've met. Yesterday he completed a two-part tour de force on The Health Care blog titled "The Difficult Science." Here are part 1 and part 2. This is about "how do we know what we think we know - and what the heck...
“They never took his sock off”: a parable of patient empowerment, resourcefulness, and literacy
Jessie Gruman's Journal of Participatory Medicine commentary, "Evidence That Engagement Does Make a Difference," reminded me of a talk delivered by Alice Tolbert Coombs, M.D., last September: As you listen to Dr. Coombs's chilling story about a man who lost his foot...
“A lot of shackling lives in language”
What do we (patients) call ourselves? This is a deep subject that's been debated a lot. (If I were Susannah Fox I'd toss in a dozen worthy links here:), but I'm short on time. Please add some in comments.) There is indeed power in the words we use, because the people...
“Unwarranted practice variation”: an essential e-patient awareness topic
Headline and body edited Oct 6, 2013: the original post talked about "practice variation," but that was bad wording. The problem is unwarranted practice variation: variation that, when studied, is not warranted by actual differences between cases. ___________ This is...
“The Spoon Theory”: brilliant description of chronic illness
If you don't truly understand how draining it can be to live with chronic illness, including chronic pain, go read The Spoon Theory right now. In 5 minutes it forever changed my own awareness of my wife's arthritis and bone pain. On Twitter I saw "spoonies" raving...
Cancer 2.0
Given the evidence that people are ready, willing, and able to engage in online discussions about cancer prevention and treatment, what steps are being taken to ensure that the U.S. (and the world) does not miss this latest opportunity for education and discovery? The...
Salzburg Global Seminar, December 2010: Informing and Involving Patients in Medical Decision Making
All, if you have a story where you were affected by being involved (or not) in a medical decision, please see my request at "Help Me Represent You" below. Same if you have points you want me to bring to this seminar’s attention. I feel extremely fortunate to be...
Going Viral Against HIV and STIs
The New York State Department of Health AIDS Institute, in partnership with AIDS.gov, held a one-day forum on social media, HIV, and sexually transmitted infections (STI) that turned out to be an unfiltered discussion of love, truth, and technology. Why was it so...
“Consent to Hoard” and other news from #IHI
I'm at the annual IHI Forum in Orlando, in an all-day workshop (class photo at left) titled "Whose Care Is It, Anyway ... and Can Health IT Help?" Laura Adams of the Rhode Island Quality Institute was just talking about the social obstacles to data mobility - doctors...
Fools! Damn fools! And Medical Science. (Right, Santa??)
(To help you visualize the scene, see the famous Coca-Cola Santa image. Now imagine Peter Frishauf asking Santa for that train set!) Dear Santa, I always believed in you Santa. All those kids who said it wasn’t true, you weren’t real, well guess what: I knew you were....
