e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Health Affairs: patient activation impact on cost + outcome
In a study report hitting the digital wires on Health Affairs at 4pm Eastern time today (March 2, 2015), a group of researchers are reporting the results of a longitudinal study of Patient Activation Measure (PAM) impact on cost and outcome metrics from a large study...
Mythbusting, “demanding patient” edition
We'd bet good money that anyone who identifies as an e-patient has been led to believe that their desire to participate actively in their medical care marks them as a "demanding patient." The perception of demanding patients is that they're behaving like spoiled divas...
NLM Director Donald Lindberg is retiring. Speak up: what’s next for the Library?
Dr. Donald Lindberg, long-time director of the National Library of Medicine, is surely the single most-quoted authority from "Doc Tom" Ferguson's e-Patient White Paper. In almost every speech I've given in the past five years I've used Doc Tom's quote of Dr. Lindberg...
OpenNotes in the BMJ: the message goes global, adoption is international
Our Society for Participatory Medicine is all about effective patient-clinician partnerships, and to us that simply requires patient access to all information about the case. As SPM co-founder Dr. Danny Sands often says in his speeches, "How can patients participate...
Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices
This is a great week for SPM, for our colleagues at the Stanford Medicine X conference, and for everyone else who's been working for years to shift medicine's thinking about the role of the patient: Yesterday the BMJ (formerly British Medical Journal) released a big,...
on the complexity of problems and ePatients as innovators
One of our Society’s best kept secrets is the composition of our membership. And lately, some of my best collaborations are coming out of conversations with fellow members. Last week, as I frenetically packed for a trip, I was chatting on the phone with our own...
e-Patient efforts on “precision medicine” #LCSM edition
SPM member Janet Freeman-Daily, who's an active voice in the #MedX and #LCSM communities, alerted us to a petition on Change.org that speaks directly to the principles of precision medicine - called for by the President in a White House event attended by our own Nick...
Join @HurtBlogger’s 48-hour “live tweet my chronic life”
LADIES AND GENTS, YOUR ATTENTION PLEASE. The famous @HurtBlogger, chronic pain patient Britt Johnson, has announced that she will LIVE TWEET 48 hours of "her chronic life," MONDAY AND TUESDAY, Feb. 2-3. She has no idea what will happen - might be ordinary, might be...
A landmark day in the movement: Patients in the Front Row
Last Friday, 200 patients, advocates, scientists, doctors and researchers gathered at the White House to hear President Obama’s launch of the Precision Medicine Initiative. According to the President, precision medicine...
The movement gets real: one of Doc Tom’s sightings gets $28 million with Iora Health
There are times in a movement when value is revealed and recognized, and you know something real is happening. In the engaged-patient movement, the first I noticed was when Amy Tenderich's Diabetes Mine blog (and its community) was acquired several years ago. That...
From OpenNotes to OurNotes: New project heads toward *real* participatory medicine
I'm beyond thrilled. Way beyond thrilled. This is going to take some figuring out, but is this what we've been striving toward, or what?? For years we've written here about the OpenNotes study (MyOpenNotes.org), funded by the Robert Wood Johnson Foundation, which...
Opening the ICU doors to family: report from Virginia Mason
Cross-posted from my personal blog yesterday On Twitter Friday night I learned from Dr. Sachin Jain of a November article that should be of interest to all of us who want to work toward full patient and family engagement in all aspects of medicine. To be sure, the...