by Mary Hennings | Aug 7, 2024
Over the past several months, SPM’s board has engaged in a planning effort, as it approaches the fifteenth anniversary of its creation. Our goal is to assess the state of the Participatory Medicine movement and discern where SPM could have its greatest impact in...
by Brenda Merriweather | Jun 12, 2023
Editor’s note: The following column by Society for Participatory Medicine board member Brenda Merriweather originally appeared in this space in December 2021. We are excerpting from that column in recognition of “Advancing Health Equity Through Participatory...
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 Lisa Gualtieri, PhD, ScM | Nov 22, 2021
The answer is probably not your medicine cabinet. The answer may be your nightstand, kitchen counter, or a variety of other locations in your home. The question is, where do you store your prescription medications? I became interested in medication adherence through...
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 | 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 | Dec 21, 2020
How do regular people find evidence-informed guidance to help make decisions about safe living in a pandemic? Questions answered when needed in a useful manner? Part 2 in this Person-First approach. Join our journey. Proem A few weeks ago, on this podcast, I...
by Danny van Leeuwen | Nov 30, 2020
Healthcare activists need communities to affect change. Considering public-private partnership with NCQA’s Digital Measurement Community with Ben Hamlin. Proem Activists seek to inform and nudge change for the better – political, social, cultural, healthcare,...
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 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 e-Patient Dave | Apr 2, 2018
Guest post by SPM member Francie Grace. Here’s a last minute Important item for your Monday To Do list. Spotted in a reminder tweet Friday from former U.S. Chief Data Scientist D.J. Patil (@dpatil): Hey data scientists, just a few days to give the @NIH...
by e-Patient Dave | Apr 1, 2018
For years many have argued that it’s wrong for research that’s funded by the government (i.e. taxpayers) to be hidden from the people who paid for it (taxpayers) by hiding the results behind paywalls. This tradition not only makes it harder for...
by e-Patient Dave | Aug 7, 2017
“To help inform patients of the best scientific knowledge…” “…as future physicians, they realize that part of their contract with society is to meet patients where they are and to help inform patients of the best of scientific knowledge about...
by e-Patient Dave | Aug 3, 2017
I’m taking the extraordinary step of rerunning, verbatim, an entire post from 2014 about this important development. Why? Because tomorrow an update is coming, and to fully appreciate the news, you need to appreciate the background. Here’s the original,...
by e-Patient Dave | Mar 29, 2017
In November we posted about an extraordinary development: NEJM Data Analysis Challenge: can others create value by seeing researchers’ data? The project has come to fruition, and the big event (free) is next Monday-Tuesday. The question for us: What’s the impact...
by e-Patient Dave | Mar 27, 2017
An announcement today in Europe (press release below) brings a new angle to the copious US coverage of drug pricing, such as predatory pricing of the EpiPen and the smirking, seemingly sociopathic Martin Shkreli. For the drug described below, the Médecins du Monde...
by e-Patient Dave | Mar 20, 2017
Please cite this post as “by Dave deBronkart, Marilyn Mann and Peter Elias MD” or, on Twitter, “@ePatientDave, @MarilynMann & @PHEski.” Our blog software only allows listing one author but they provided 2/3 of the content. The medical news...
by e-Patient Dave | Nov 11, 2016
This is big. Please share it with anyone you know who’s a believer in open data. You may have heard that back in January the New England Journal of Medicine created a firestorm by saying “parasites” about people who want to see a researcher’s...
by e-Patient Dave | Aug 8, 2016
We’d love to start a list of other patient-authored papers and posters – let us know in the comments! We know of Dana M. Lewis & Scott Leibrand’s poster about #OpenAPS in June – who else?? We’ve written before about e-patient Sean...
by David Harlow | Feb 27, 2016
The recent Precision Medicine Initiative Summit at the White House saw dozens of private entities committing to join with the administration in supercharging the effort to enroll one million patients into precision medicine research programs, collecting and securely...
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