e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Participatory Medicine as Revolution! Think Critically! Communicate!
My son graduated from college last year and is now in Nepal, visiting schools and writing about rural education under the Maoist regime. He was excited to tell me, when I visited him recently in India, about how a classic book on education, Pedagogy of the Oppressed...
The Markle Foundation’s work on Meaningful Use
Last night I posted my own thoughts on the definition of "meaningful use," a term that will have significant impact on our next-generation medical records systems. To me it's vital that the term be defined to include full access for you and me (patients) to our own...
“Meaningful Use”: a pivotal definition for new-wave medical records systems
I've struggled with what to say about this subject for two weeks, because I want to "get it right" but it's vast. So I'm giving up any hope of being comprehensive, and I'm just going to say what little I know, and what I think, and let any discussion happen from...
Democracy and Healthcare
At boingboing, Doug Rushkoff posted a video from C-Span of the Senate Hearings on Healthcare Reform, including a half dozen "peaceful and very articulate" protesters "demanding a seat at the table (where 15 witnesses wait to testify, not one representing the...
AHRQ embraces Participatory Medicine.
The President? Not So Much!
Clinicians, the Government, and many other groups are working hard to improve health care quality, but it's a team effort. You can improve your care and the care of your loved ones by taking an active role in your health care. Ask questions. Understand your condition....
Open Access to Publicly-Funded Research: Let Them Eat Cake?
Update on 12/3/14: Nature re-ignited the access debate when they announced that they will make all their articles "free to view" (but if you read the fine print: it makes the "dark social" practice of #icanhazpdf and other access work-arounds illegal). To catch up,...
Stress: the New Normal for Cancer Patients?
Deborah Bell is actively involved in cancer advocacy and manages several online communities for cancer patients, their families, and their friends, having been an ACOR listowner for 11 years, and a listmember for 13. She contributed the following essay: I know a...
Immediate data requested. Please share with breast cancer patients everywhere.
Chapter 5 of the e-Patient White Paper is E-Patients as Medical Researchers. It details how, in the absence of sufficient medical data for their cases, patients and parents have conducted extraordinary research, time after time, often stunning the medical...
Health 2.0 / Ix Conference: What About Minority Representation?
As you have seen in my last post I have really enjoyed the conference. Exhilarating is the best way to describe the feeling. But I am a white male in his early 50s. That makes me, statistically, the equivalent of the majority of attendees at the conference. And so I...
Patients first. Doctors second.
An Op-Ed piece at the healthcare blog, written by 2 MDs from Harvard Medical School is pretty clear! For those of us who believe the time has come for participatory medicine, the following quote is particularly interesting: Empowering patients should be the first step...
Health 2.0 meets Ix: The Rise of the Patient Voices
I have been following with real interest the notes and discussions about the Health 2.0/Ix conference that took place in Boston last week. I am not willing to get involved in this discussion because in some ways I think it missed the most important aspect of the...
An e-Patient is Born: Elyse Chapman’s story
One of the key learnings of my first year as a student of the e-patient movement, studying how healthcare is evolving, is this: People get radicalized when it gets personal. This is one such story: it's the e-patient awakening of a long-time personal friend of mine....
