e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Angelina Jolie, BRCA1, Public Health, Patent Law — & the Empowered Patient
Going public recently with her story of a prophylactic double mastectomy after testing positive for BRCA1 (a gene linked to breast cancer) via an op-ed piece in the New York Times, Angelina Jolie is clearly trying to get the message out that radical choices must...
How to be Participatory in the Face of Adversity
From the lens of a patient who recently experienced major surgery, I now realize how difficult it is to be participatory when you are in pain and taking large doses of pain medication which dulls the senses and puts you in a place where you are not really thinking...
Mother’s Day
We have posted many stories featuring mothers over the years. In celebration of Mother's Day, a compilation: A Lifetime of Participatory Medicine Can Start With Maternity Care Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey ("Mama Lion" part one) Great...
The FDA Patient Network Website – Patient-Centeredness that Walks the Walk
The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient...
Massively Open Online Medicine: Bad Idea or Just Before Its Time?
The new darling of the online educational community is Massively Open Online Courses (MOOCs). The example which figures most prominently in the popular imagination is the Khan Academy, though its founder says otherwise, noting that MOOCs are merely online...
Monthly Introduction to e-Patients.net
This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn. Here's how to become a Society member, individual or corporate. Our publications: This...
How do (older, lower-income) patients learn?
Rebecka Sexton of the Center For Innovation at the Carilion Clinic in Roanoke, VA, emailed a great question and I'd like to share it more widely: We are working on a project here at Carilion on chronic diseases related to Population Health Management related to COPD....
How Things Change
SPM member Jody Schoger's post “Cancer: Part Two” at her blog Women with Cancer landed with a big thud on April 26. Schoger was recently diagnosed with metastatic breast cancer. She’s a co-founder of #bcsm (breast cancer social media), one of the highest...
A picture worth a thousand “What if health care..?” words
What if kids were given the support to participate in and understand their own health care? - @savingcase For more health care dreams, please see: What if health care...? (Storify) Or any of my other #whatifhc posts.
SPM Response to ONC RFI on Advancing Interoperability of EHRs and HIE
With the tireless help of Adrian Gropper, and the counsel of executive committee members Michael Millenson and Danny Sands who went above and beyond, and our President Sarah Krüg, the Society for Participatory Medicine's Public Policy Committee completed a last-minute...
The Black Box of You: Why the Quantified Self is so Frustrating Today
Imagine a black box. You can feed all sorts of information and data into it all the live long day. But the amount of data you can get out of it is limited. It just stares back at you with its blank, neutral sides. It can tell you things like where it was manufactured,...
Farewell (seven years ago today), Doc Tom
This morning on Facebook, an SPM member (who were you??) pointed out that it was seven years ago today that "Doc Tom" Ferguson, the visionary who foresaw the e-patient movement, passed away unexpectedly while being treated for multiple myeloma. Click the image (or...
