by e-Patient Dave | Sep 16, 2014
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...
by Susannah Fox | Sep 11, 2014
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...
by e-Patient Dave | Sep 10, 2014
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...
by Ileana Balcu | Sep 10, 2014
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...
by e-Patient Dave | Sep 7, 2014
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,...
by e-Patient Dave | Sep 5, 2014
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...
by Casey Quinlan | Sep 4, 2014
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...
by e-Patient Dave | Aug 18, 2014
We reported five weeks ago about the passing of Jessie Gruman, one of the greatest figures in our movement, founder of the Center for Advancing Health (CFAH), founding co-editor-in-chief of our Journal of Participatory Medicine, and much more. CFAH has since expanded...
by e-Patient Dave | Aug 9, 2014
This article was part of the big Health Affairs issue “New Era of Patient Engagement” (Feb 2013) which Ileana Balcu blogged about at the time. I’ve long been a fan of the Patient Activation Measure, which I wrote about here three years ago in The...
by Marilyn Mann | Aug 8, 2014
The American Heart Association journal Circulation: Cardiovascular Quality and Outcomes has announced a new Patient or Caregiver Viewpoint section in the journal. Viewpoints will be authored by patients or their caregivers and will discuss the patient’s...
by e-Patient Dave | Aug 1, 2014
We’ve often written here about the OpenNotes study (here’s a site search), which documented that when patients can see what their clinicians wrote, the sky doesn’t fall; instead, all kinds of good things happen. This is game-changing, even...
by e-Patient Dave | Jul 29, 2014
An article of importance to our movement appeared in June, in our Journal of Participatory Medicine. It’s an analysis of twelve years of literature about patient engagement, documenting what words people used, what context they appeared in, and (perhaps most...
by Marilyn Mann | Jul 28, 2014
Preface by e-Patient Dave: We have often written here (see posts) about Shared Decision Making, in which patients are engaged in choosing among treatment options. A key method is to give patients a “decision aid” (DA) – a document or video that...
by e-Patient Dave | Jul 27, 2014
Ah, social media. On Facebook a couple of hours ago, Swedish SPM member Sara Riggare posted: Responses were quick and robust: “Web MD has an app that you can download that I use. I find it pretty useful.” – Mark Burek “That’s a sticky...
by e-Patient Dave | Jul 26, 2014
We don’t tell you often enough here of new pieces in JoPM, our Journal of Participatory Medicine. Of course you can subscribe to the journal on their site, but I hope to specifically point things out here. (See also our past posts in the JoPM category.) Here are...
by Susannah Fox | Jul 23, 2014
At 9am on Sunday, Sept. 7, 2014, Stanford Medicine X will host a discussion led by Pamela Ressler, Colleen Young, Meredith Gould and me about the power and pitfalls of people sharing their health experiences online. We are “flipping” the panel by sharing...
by e-Patient Dave | Jul 18, 2014
I know many of our readers already saw this, but, from her personal blog: In one way, I’m sad to see that her work at Pew is over. In her 14 years there, time after time her work made clear what was actually happening as people use the internet in pursuing...
by Ileana Balcu | Jul 16, 2014
This blog welcomes guest posts from SPM members on relevant topics. Zack Berger of Johns Hopkins (@ZackBergerMDPhD) is highly committed to participatory medicine, and as this post shows, his book Talking To Your Doctor gets right down into the how-to’s. (More on...
by e-Patient Dave | Jul 15, 2014
I’m saddened (really saddened, as I write this) to report that one of the titans of our movement, Jessie Gruman, died unexpectedly yesterday at home in New York. She had long been sick, but the demise was sudden. In addition to the mountain of work she produced...
by Casey Quinlan | Jul 2, 2014
Several SPM members were in attendance at the recent SIIPC14 conference at Dartmouth, where the ongoing work on healthcare system transformation has been the source of much great content on e-patients.net over the years. Casey Quinlan – yes, yours truly...
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