Society for Participatory Medicine
e-patients.net blog
research issues
policy issues, research issues, shared decision making
PCORI and Just-in-Time Decisions
SPM member Danny van Leeuwen @HealthcareHatsis an active member of PCORI’s patient engagement workgroup. A month ago he mentioned a post about PCORI on WBUR’s CommonHealth blog, Medical Research: By Law, It’s All About You. I said “You should make short blog posts about things like this!” And he did. SPM members are welcome to write [...]
Read Moregeneral, key people, news & gossip, positive patterns, pt/doc co-care, research issues, shared decision making
“The Patient as Partner” in Medical Research at Radboud University
This encouraging news is adapted from the November cover story of Radboud University’s magazine Radbode (PDF, in Dutch, 1.6MB). Thanks to @LucienEngelen, initiator of this project, for forwarding it to us. Not surprisingly, Lucien’s also the creator of the heavily patient-centric Future of Health conferences, which started with TEDx Maastricht 2011. Editorial note: I heavily edited [...]
Read Moregeneral, policy issues, research issues
PCORI Puzzle: Can a Marriage of Goo-Goos and Pinky-Ringers Transform Health Care?
The new Patient-Centered Outcomes Research Institute (PCORI) has been asking different stakeholders about the most important issues to address with the hundreds of millions of dollars the quasi-governmental group will shortly be doling out in grants. Not surprisingly, the stakeholders have been more than happy to respond. PCORI’s most recent day of dialogue, which I attended as a [...]
Read Morepolicy issues, pts as teachers, research issues
PCORI Workshop post 3: Danny van Leeuwen (@HealthHats)
Next in our series of posts by SPM members on their experience at last weekend’s PCORI workshop. See Monday’s introductory post. I recently met (face to face) Danny van Leeuwen, one of the newer members of our society. He’s a sensitive, caring patient and RN, and one of the patient SPM members to attend last weekend’s [...]
Read Morepolicy issues, pts as teachers, research issues
PCORI Workshop post 2: Kathy Day RN (McCleary MRSA Prevention)
Second in a series announced yesterday of posts by SPM members who attended last weekend’s PCORI workshop. This one’s from Kathy Day, an avid e-patient advocate from Maine. This originally appeared here on her blog, on Monday. Why PCORI made me endure flying through Frankenstorm I arrived home last night around midnight, after flying north to [...]
Read Morepolicy issues, pts as teachers, research issues
PCORI Workshop post 1: Kelly Young (@RAWarrior)
As noted in today’s earlier post, we’re starting a series of posts by SPM members who participated in last weekend’s PCORI workshop. Kelly Young (@RAWarrior) is one of the smartest e-patients I’ve ever seen anywhere. Aside from her technical expertise (a superbly produced blog), and her administrative skill (creating the Rheumatoid Patient Foundation to address scientific [...]
Read Morepolicy issues, pts as teachers, research issues
Beginning a series: SPM members’ thoughts on the PCORI workshop
All: I’d like to collect a list of all blog posts about this PCORI weekend, from SPM members (our Society) and anyone else. Please write to blog@participatorymedicine.org, and disregard the auto-reply that you’ll get. __________________ This post started as a prolog to Kelly Young’s upcoming post, but at some point a prolog needs to stand [...]
Read Moreethics, research issues, trends & principles, understanding statistics
Fact checking at Medicine X
(A cross-post from susannahfox.com) I had the great honor of being part of the first Medicine X conference at Stanford University last weekend. I presented a sneak preview of new survey results collected by the Pew Internet Project and the California HealthCare Foundation. Overall, the conference was magical, as I wrote in a previous post. [...]
Read Moregeneral, policy issues, reforming hc, research issues, shared decision making
Health Affairs: An Evidence-Based Approach To Communicating Health Care Evidence To Patients
This blogpost by Chuck Alston and Patrick McCabe originally appeared on the Health Affairs blog. Many thanks to SPM member Michael Millenson for alerting e-Patients.net to this piece. It has been 22 years since David M. Eddy — the heart surgeon turned mathematician and health care economist — put the term “evidence-based” into play with [...]
Read Morepatient networks, pt/doc co-care, reforming hc, research issues, trends & principles
Medicine 2.0 Day One
My schedule only allowed me to attend Day One of the fantastically rich Medicine 2.0 Congress being held this weekend in Boston. I thought I’d share my impressions and notes in case they spark inspiration for other people, as each presenter and hallway conversation did for me.
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