e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
What has happened to the Personal Health Record?
By Nancy B. Finn There has been so much discussion online and in the press about electronic health records and physicians sharing EHR data with patients via such tools as OpenNotes and Blue Button, that the personal health record (PHR) has been lost in the dialogue....
Mayo chief residents name SPM patient as Visiting Professor in Internal Medicine
Wikipedia says "Participatory medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and ... providers encourage and value them as full partners." That movement gets a big boost in credibility...
WSJ: “Researchers are asking patients to help design clinical trials.”
I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference (the "European ASCO" cancer conference) in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with patients as...
Remembrance in New York: “Jessie Gruman, the Force”
Yesterday at the New York Academy of Medicine was the first of Jessie Gruman's two remembrance events, which we blogged about. Here's a view of the gathering, which was followed by a reception. It was a fitting, moving, great tour through her life, with short talks by...
New on JoPM: “e-Patients Never Retire”
Today in our Society's journal, SPM co-founders Joe and Terry Graedon of PeoplesPharmacy.com posted something I couldn't agree with more: e-Patients Never Retire That's kinda by definition, eh? But there's an uppity Sixties edge to this, and with this too I couldn't...
The diverse nature of patient communities: a prostate cancer patient’s experience
On my own site I have a (loose, rough, poorly managed) list of patient communities, gathered ad hoc, as time allows. Today I posted a new contribution of a different sort - the experiences of a prostate cancer patient I met at a speaking event last week in Vermont....
Jessie Gruman: Poetry in Motion
This essay was written by Sarah Greene, co-founder of the Journal of Participatory Medicine and currently Founder/CEO of RapidScience.org. “That the powerful play goes on, and you may contribute a verse.” - Walt Whitman, ‘O Me, O Life’ We New Yorkers have been...
(Video) Larry Weed, father of the Problem Oriented Medical Record – Grand Rounds, 1971
Students of medicine (surely most MDs) will know the name Larry Weed, but I didn't until a few years ago on this blog, when I learned that in 1999 our founder "Doc Tom" Ferguson gave Weed an Outstanding Achievement Award. In the late 1960s Dr. Weed created the concept...
Health Affairs – Narrative Matters: Suzanne Mintz’s article about caring for caregivers
Our member Suzanne Mintz, a Family Caregiver Advocate, shares the link to her Narrative Matters article/podcast in the current issue of Health Affairs: The Double Helix: When The System Fails The Intertwined Needs Of Caregiver And Patient...
Zack Berger from #MedX on uncertainty and decision aids
Regular readers may recall SPM member Zack Berger MD PhD's July post here The pledge of the patient-centered physician. Zack is one of the many SPM members attending the Stanford Medicine X conference this weekend and sends this Saturday night report, cross-posted...
Request: true stories of where patient engagement in the chart made a difference
I'm giving a talk in Vermont next week, to health IT workers, and in talking with the organizers we realized it would be great to give them a vision of WHY we're doing this - some true stories of where patients benefitted from seeing the data in their chart. (By the...
To Be, or Not to Be, a B Corp
Preface (later) by e-Patient Dave - Casey and I were discussing that one of the obstacles impeding changing in medicine is that by law, corporate officers have to serve their shareholders first, i.e. make money before they get into any do-gooder stuff. The subject of...
