Society for Participatory Medicine
e-patients.net blog
cancer
end of life, general, key people, news & gossip, others' e-patient stories
Steve Jobs’ Cancer Denial
The 60 minutes interview with Steve Jobs’ biographer is an intriguing piece that gives us a few insights into Steve Jobs and his battle with pancreatic cancer. But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of TIME Magazine, talk about how Jobs was in complete denial [...]
Read Moree-patient stories, end of life, general, patient networks, pts as teachers, understanding statistics
Tami Boehmer: Hope versus statistics
Guest blogger Tami Boehmer shares a recent conversation with e-Patient Dave about the pitfalls of survival statistics and the power of hope. Tami’s blog, “From Incurable to Incredible,” is at www.miraclesurvivors.com. I recently had the honor of speaking with Dave deBronkart, widely known as “e-Patient Dave.” Dave is the leading spokesperson for the e-Patient movement [...]
Read Morefound on the net, news & gossip, positive patterns
Would Your Doctor Pay for Wasted Time? (CNN.com)
Strictly speaking this isn’t about participatory medicine, but it is about being an empowered consumer of care. There are several dimensions to empowerment, including (but not limited to): Knowing what you want Recognizing whether you’re getting it When you’re not, speaking up about it – courteously, when you can. You know real change is happening [...]
Read Morepolicy issues, pts as teachers, research issues
President’s Cancer Panel: Input, Please
What evidence would you bring to convince cancer researchers and policy makers to pay attention to how the internet is changing health and health care? That’s my challenge for the Dec. 14 meeting of the President’s Cancer Panel, “The Future of Cancer Research: Accelerating Scientific Innovation” (PDF of the agenda).
Read Morepatient networks
Patient Communities: Which Way Forward?
If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group? This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the [...]
Read Morekey people, Why PM
Laugh, Sing, and Eat Like a Pig
e-Patient Dave’s book, Laugh, Sing, and Eat like a Pig, is out! Mark Graban captures the health geek excitement: The best writers make you feel like you’re spending time with a wise friend — add some tears and laughs and you have Dave’s book. I wasn’t there for his whole journey, so I’m learning new [...]
Read Moreresearch issues
Health Geek Tip: Abstracts are ads. Read full studies when you can.
Ivan Oransky, executive editor of Reuters Health, provided excellent evidence yesterday regarding the need to look past abstracts of journal articles if accuracy matters to you:
Read Moredemographics, trends & principles
Health 2.0 Europe: A Moveable Feast
Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building. Health 2.0 Europe began, for me, in February, [...]
Read Morept/doc co-care, Why PM
Patient to doctor: “Why aren’t you harder on me?”
A joint post by e-Patient Dave and Dr. Danny Sands, written from alternating points of view. Danny: An important moment happened a few months ago during office hours – important because it brought a profound shift in Dave’s view of the doctor-patient relationship. And that’s a vital part of participatory medicine.
Read Morenet-friendly docs
Ahem. :-)
I am about to punk my well-known doctor. :–) Me being me, I just had my annual physical. Great visit and all that. Yesterday I got a letter about my lab results. My cholesterol and weight are trending unfavorably, so the good doctor said “you need to take lifestyle changes more seriously to reduce your [...]
Read More
