e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
#epatient – Are Millennials Born That Way?
Reposted from the Mighty Mouth blog Most of the people I meet in my voyages ’round healthcare system transformation, grassroots edition, arrived at the portal of #epatient via a trip through the medical-industrial complex. Either they, or someone they cared for, wound...
Digital Technology in Health and Participatory Medicine Recognized in UN Forum
The Commission on the Status of Women (CSW) was established by the United Nations Economic and Social Council (ECOSOC) in 1946. It is the principal global policy-making body dedicated exclusively to gender equality and advancement of women. The active...
Count the e-patient takeaways: “What I learned going down an emergency slide”
Susannah Fox, long one of our most popular and prolific bloggers, is roaming to wider audiences these days. She's entrepreneur-in-residence at Robert Wood Johnson, she has her own site, and she's just started writing on the hip-hip site Medium.com. We've long said...
Inaugural Emerging Leader Award from CCFA- DC Chapter for Carly Medosch
Society for Participatory Medicine member Carly Medosch and her mother Mary Jo have run the Crohn's and Colitis Foundation of America's Fredericksburg, VA support group for the past 6 years. Crohn's disease and ulcerative colitis are two forms of imflamatory bowel...
WHO in Geneva – SPM in the house!
SPM member Casey Quinlan (who's posting this) was invited to attend an event at the WHO in Geneva. This post originally appeared on her Mighty Casey Media blog, and is reposted here in its entirety by SPM request. Guess who got invited to WHO? No, really. The World...
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...