by John M. Grohol, Psy.D. | Jan 15, 2025
For decades, policymakers, CEOs, politicians, doctors, nurses, healthcare workers, caregivers, and anyone who’s been a patient inside or outside a hospital has known one simple fact — the US healthcare system is broken. Every other first world country has...
by e-Patient Dave | Mar 29, 2024
Guest post by long-time SPM member Tracy Zervakis. Participatory medicine involves professionals and patients working together to get healthcare done. When a treatment plan is agreed and chosen, the best outcome obviously requires carrying out the plan – but...
by Eric Bersh | Feb 1, 2023
Flash back to my article for the Society for Participatory Medicine last year: Let’s Save the Date and Make Patient Engagement Official in 2022. I’m here to deliver some great news: we tied the knot! By the power vested in clinical research, the FDA now pronounces us...
by e-Patient Dave | Jun 17, 2022
I know this is short notice. Quickly submit a letter TODAY JUNE 17 demanding that CMS not give in to industry pressure on this vital patient empowerment issue. Pick a template letter provided by Leapfrog Group and use it as is, or change as many words as you like:...
by e-Patient Dave | Mar 9, 2020
The long-awaited rules on data access have been published this morning from two key parts of the US Department of Health & Human Services. I’ll expand this post with more links as we digest what’s been offered and will unfold in the coming week. The...
by e-Patient Dave | Jan 26, 2020
Many people are asking if they can add their stories or their signatures. Please do so in comments! We’ll copy signatures into the body of the post as time allows. We, the undersigned, are patients, family caregivers and advocates who are desperate to receive...
by e-Patient Dave | Apr 11, 2019
What if you hired a financial manager to handle your money – a trusted professional, like that guy above – then discovered they didn’t know what they were doing, and your records were a mess? How would you feel? That’s pretty much what happened...
by e-Patient Dave | Apr 10, 2019
It’s a big anniversary, this spring – this week, even. Ten years ago the whole issue of personal health data exploded into the headlines. It was about something I wrote here, not having a clue it was any kind of a big thing, but it ended up on the front...
by e-Patient Dave | Apr 5, 2019
SPM member Jeanne Pinder has spent years crusading for price transparency with her startup ClearHealthCosts. She’s formed partnerships with WHYY in Philadelphia, been on CBS News, won awards for investigative journalism with NOLA.com and Fox 8’s...
by e-Patient Dave | Feb 21, 2019
The famous TED Talks site TED.com is the holy grail of many evangelists. Aside from the extraordinary visibility it gives your message, and aside from the validation of your message (the site’s tagline is “Ideas worth spreading”), it means...
by Casey Quinlan | Nov 16, 2018
SPM members Casey Quinlan (yes, yours truly) and Jan Oldenburg were part of a trinity of folks debating the idea of paying people for the data they contribute to the digital economy, in healthcare and in all other sectors. Here’s the full version of the...
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 Casey Quinlan | Oct 20, 2018
This will be the third, and last, in my short series on attending the Cochrane Colloquium in Edinburgh in September of this year. In the first post, I talked about what that conference was like; in the second, I shared an overview of Cochrane as a global movement to...
by Casey Quinlan | Oct 13, 2018
If you’ve been paying attention, you know that yours truly got the chance to attend the annual Cochrane Colloquium in Edinburgh in September this year, thanks to a travel stipend from SPM, a #PatientsIncluded bursary from Cochrane UK, the hosts of the 2018...
by e-Patient Dave | Oct 9, 2018
[Update: this post has been picked up and cross-posted on the widely read The Health Care Blog] Here’s the latest in our series of posts by and about the outstanding speakers we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct....
by Casey Quinlan | Oct 6, 2018
Red Hot Chili Pipers at the Colloquium | image credit: Simon Williams Photography I won the big platinum #PatientsIncluded ring (much better than brass) this year with an opportunity to attend the Cochrane Colloquium, the global health science and health services...
by e-Patient Dave | Sep 25, 2018
Here’s the latest in a series of posts by and about the outstanding speakers we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston, attached to the prestigious Connected Health conference. Register here. Healthcare...
by Casey Quinlan | Aug 27, 2018
From SPM Lifetime Member Josh Rubin: Fellow S4PMers, I am elated to report that on Monday, August 20, 2018, The Health Care Blog (THCB) re-posted my S4PM guest blog post titled, “Biomedical Knowledge Must Be Mobilized to Save Lives, Not Privatized in the...
by Casey Quinlan | Aug 5, 2018
Guest post by SPM Lifetime Member Joshua C. Rubin, JD, MBA, MPH, MPP Last week, Facebook’s unprecedented stock price collapse triggered by concerns over personal data privacy, as well as same-day commentary regarding GlaxoSmithKline’s investment in 23andMe to gain...
by e-Patient Dave | Jul 15, 2018
TONIGHT: 9 pm Eastern time. #BCSM Twitter chat on the latest Facebook privacy issue. This time the data leaked is from a patient group. FB says it’s a nothingburger. What do you think? Facebook has a record of privacy leaks. The poster shown here (click to...
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