Society for Participatory Medicine
e-patients.net blog
shared decision making, understanding statistics, Why PM
“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 can we do [...]
Read Moreshared decision making, Why PM
“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 because nobody ever took his sock off to examine it, please review Jessie’s [...]
Read Moretrends & principles
“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 who hear them attach [...]
Read Moree-pts resources, practice variation, shared decision making, understanding statistics, Why PM
“Practice variation”: an essential e-patient awareness topic
This is the first of the follow-up posts I hope to write from participating last week in the Salzburg Global Seminar titled “The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care.” One of our purposes on this site is to help people develop e-patient skills, so they can [...]
Read Morepts as teachers
“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 about this months ago but I finally took [...]
Read Morepatient networks, trends & principles
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 Pew Internet Project‘s latest report on health and health care, Cancer [...]
Read Moree-pts resources, policy issues, pt/doc co-care, research issues, trends & principles, understanding statistics, Why PM
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 attending a five-day Salzburg Global Seminar, [...]
Read Morepositive patterns
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 smoking hot? And is this unique to conferences (or panels) about sexual [...]
Read Moremedical records, policy issues, Why PM
“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 who don’t want to share their records [...]
Read Morenews & gossip, policy issues
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. I wanna tell you, Santa, life is [...]
Read More
