by Danny van Leeuwen | Jan 12, 2021
Designing clinical trials for and with people with Traumatic Brain Injury. Lynne Becker looking forward over time, not backward. Building a business. Proem You know the old story of the researcher looking for their lost keys under the streetlight when they lost them...
by Danny van Leeuwen | Nov 16, 2020
How can laypeople find up-to-date, trustworthy answers to questions they have about living safely in an emergency, when they have them, in a useful manner? Part 1: a person-first approach for researchers & content creators to help people and their communities find...
by Danny van Leeuwen | Nov 9, 2020
Person-included research, co-production, tragedy, grief, health equity, and relationships in life and research. Chat with Amy Price of Stanford and BMJ Proem Research follows life. Life comes before research. My diagnosis of Multiple Sclerosis preceded my need for...
by Danny van Leeuwen | Nov 11, 2018
CMS (Center for Medicare and Medicaid)’s work on Value-Based Measures matters for patients and caregivers because we seek affordable, accessible, equitable, and effective medical care. Or in English: Transparent cost within my means, in a location I can reach,...
by Sue Woods | Oct 29, 2018
On October 17th, the Society enjoyed their 2nd conference in Boston. Filling a larger room than last year, attendees – in person and virtual – enjoyed an impressive lineup of speakers. The passion in the room was palpable. Much more to come on that. A...
by e-Patient Dave | May 2, 2017
This post by SPM member MaryAnne Sterling is a thrilling sequel to our ongoing posts about CCCC (an organizational member of our Society) and its support for e-patients at their annual summit. MaryAnne is CEO of Sterling Health IT Consulting. She’s a healthcare...
by Danny van Leeuwen | Apr 29, 2017
I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support...
by e-Patient Dave | Dec 1, 2015
Today’s Washington Post has a terrific, carefully researched, precise article – on the front page of the Health & Science section – about the reality of a good patient-clinician partnership: Does your doctor listen when you talk? by Suzanne...
by e-Patient Dave | Nov 17, 2015
SPM Past President Michael Millenson reports that the Urban Institute has published a paper he co-authored with Bob Berenson:Â The Road to Making Patient-Centered Care Real: Policy Vehicles and Potholes. Michael writes: This is the most comprehensive look ever at the...
by Ileana Balcu | Nov 4, 2014
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...
by e-Patient Dave | Feb 24, 2013
This is a long post, but it strikes deep to the core of the transformation underway in medicine, even in the science that drives medicine. It appears the world is starting to change, in a very good way. We’ve often written about the changing culture of medicine,...
by Danny van Leeuwen | Jan 16, 2013
This is the third of 3 recommendations a group of Boston-based PCORI Ambassadors made to the PCORI Board in November. The first was Expanding the Scope of Research Questions Funded, the second, Micro-contracts. Researchers typically struggle to include...
by Kathleen O'Malley | Mar 13, 2012
Guest blogger Susan Woods, a physician and SPM board member, urges patients to help shape PCORI’s draft National Priorities for Research and initial Research Agenda, and offers her own comments here. The public comment period ends at 11:59 pm EST on March 15....
by e-Patient Dave | Oct 22, 2011
Corrections 8:45 pm ET Monday 10/24: This post’s title originally said HHS was seeking patients. Actually it’s PCORI, a new non-government agency, as described below. Both affect the future of healthcare, but PCORI isn’t part of HHS. The title also...
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