by e-Patient Dave | Apr 13, 2018
Longtime SPM member Danny van Leeuwen (@HealthHats) is seeking nomination and support as a “patient/caregiver stakeholder” seat on the Board of Governors of PCORI, the Patient-Centered Outcomes Research Institute, about which we’ve blogged often...
by Liz Salmi | Jan 11, 2017
Intro note by e-Patient Dave: What a great development! CCCC is an organizational member of our Society, and last year we blogged CCCC conference announces inaugural class of palliative care e-patients, and now, even better news: e-patient participation is getting...
by Danny van Leeuwen | Jul 22, 2013
You may remember that I’m a Patient Reviewer for PCORI (Patient Centered Outcomes Research). PCORI, a federal initiative, helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity,...
by Kathleen O'Malley | Apr 5, 2013
This guest post by Michael L. Millenson originally appeared on The Health Care Blog. Michael is president of Health Quality Advisors LLC in Highland Park, IL; the Mervin Shalowitz, MD Visiting Scholar at the Kellogg School of Management; and a board member of the...
by Danny van Leeuwen | Feb 9, 2013
The Patient Centered Outcomes Research Initiative (PCORI) was established in 2010 by the Affordable Care Act with a mission to help people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity,...
by Danny van Leeuwen | Jan 4, 2013
Susan Woods responded to my previous post, PCORI and Just-In Time Decisions with the research funding system doesn’t really work for anyone. It is in concrete, Agreed. Micro Contracts could be a small intervention that could help move the dial. (As a reminder,...
by e-Patient Dave | Dec 30, 2012
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...
by Michael Millenson | Dec 11, 2012
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,...
by e-Patient Dave | Nov 1, 2012
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...
by e-Patient Dave | Oct 31, 2012
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...
by e-Patient Dave | Oct 30, 2012
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...
by e-Patient Dave | Oct 30, 2012
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...
by Kathleen O'Malley | Feb 13, 2012
We encourage our readers to attend this February 27 event and help PCORI shape its agenda for clinical effectiveness research. You can find a link to their draft priorities by clicking to this page. Registration for the forum is required; please see the link in the...
by Eric Bersh | Sep 27, 2022
“Lack of effort and persistence” Those words cut like a knife, leaving a deeper wound than any facet of illness my daughter has faced. A provider used those words to describe my 19-year-old daughter Sara, who has lived her entire life with chronic complex medical...
by Eric Bersh | May 5, 2022
We cannot always choose what happens to us in life, but we can choose how we respond and handle it. Take for example, the time that I had a physical examination with my relatively new primary care physician. They did blood work and I received a report, along with a...
by Danny van Leeuwen | Apr 18, 2022
Engaging patients differs depending on the role. Those on national Boards lead, strategize, advocate, communicate. Adam Thompson is on the Board of NQF. Listen in. Proem As a nurse, I studied individual health. Then I became a student of organizational health. That...
by Geri Lynn Baumblatt | Feb 23, 2022
Informal, unpaid family caregivers and care partners are increasingly the backbone of participatory medicine. My father was a physician, but when he was seriously ill, it was really on my mom and me to advocate for him, understand the constellation of conditions,...
by Danny van Leeuwen | Jan 3, 2022
Coaching, critical to my success in life, art, politics, advocacy. Still need to do my own work & make choices. Listen to a session with one of my coaches, Jan Oldenburg https://health-hats.com/pod153/ or watch it on YouTube https://youtu.be/4TnT6Pk3TgM or read it...
by Danny van Leeuwen | Oct 18, 2021
What does healthcare cost mean? I can’t explain it. Listen to Matt Pickering from Nat Quality Forum help us out. Consider serving as a patient rep with NQF. Listen to full 41 min episode here https://health-hats.com/pod145/ YouTube Episode Trailer Proem If a grocery...
by Danny van Leeuwen | Oct 4, 2021
Innovation is not like switching on a lightbulb for the world. Rather it’s local iterative, persistent steps. Thoughts from the Patient Experience Symposium. Listen to the podcast here https://health-hats.com/pod144/ Proem As I left the Patient Experience...
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