by Eric Bersh | Feb 5, 2025
Mortality is a fabric more important than money, politics, and belief systems. We all share the same responsibility of health; the only variable is the time in our life we acknowledge it. Rare/undiagnosed consumer behavior is the most intense example of participatory...
by Eric Bersh | Aug 17, 2023
I was born with a congenital heart defect called bicuspid aortic stenosis with regurgitation. When I was 12 years old I was told I needed immediate open-heart surgery. As the anxiety, depression and sheer terror set in, my family tried to distract me by taking me on...
by Eric Bersh | Sep 19, 2022
Active surveillance (AS) for low-risk to intermediate-risk prostate cancer has been “an overnight success” that took 30 years to move from academia to mainstream practices. Since 2014, AS — close monitoring of low-risk prostate cancer with PSA blood testing,...
by Eric Bersh | Jul 12, 2022
When I heard the words, “You have Lupus,” I didn’t know the magnitude of how much my life was going to be tested. It started in 1980 when rashes and unexplained fevers plagued my life. Seeing doctors about my symptoms led to solutions that were only temporary. Fifteen...
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 Sarah Krüg | Mar 12, 2019
“Vague but exciting…,” was the response Sir Tim Berners-Lee received when he submitted a proposal for an information management system (aka the world wide web) to his supervisor in March of 1989. Three decades later, we have hit a key milestone, and approximately half...
by Peter Elias | Jul 7, 2016
Peter Elias MD (in photo at left) is a member-at-large on the board of our Society for Participatory Medicine. See his earlier posts here. Particularly relevant is his Proposal for a TRULY patient-centered medical record, The experience he recounts here, as a...
by David Harlow | Jan 12, 2016
A long time ago (in internet years), the original HIPAA regulations were promulgated. (The final Privacy Rule was published in 2000.) They’ve been tweaked and updated over the years, most notably in the “mega-reg” promulgated a few years back in...
by e-Patient Dave | Dec 18, 2015
This blog welcomes guest posts from SPM members on relevant topics. One of our Society’s newest members, Susan Cournoyer, is a tech industry analyst, and is familiar with the concept of systems that are well designed or weakly designed, e.g. with a “single...
by Ileana Balcu | Sep 8, 2015
To all in the Washington/Baltimore/northern Virginia area (and elsewhere if you care to travel!): The patient committee of the Society for Improved Diagnosis in Medicine would like to invite you to our second annual Patient Summit on Diagnosis. The summit is part of...
by Ileana Balcu | Jun 3, 2015
Ordinarily we limit guest posts to current members of SPM, but this is an extraordinary case. Duncan Cross’s post illustrates so many aspects of how empowered, engaged, activated patients view their lives, and how important it is to have an effective...
by David Harlow | Jun 23, 2014
Charlotte Yeh is the Chief Medical Officer of AARP Services, and has had a long career in government and as a practicing emergency physician. (Our paths first crossed years ago when we were both working on pre-hospital care reform in Massachusetts.) She wrote a piece...
by David Harlow | May 1, 2014
The Heartbleed web security exploit was first publicized several weeks ago. In the time since then, numerous web-based services have let their users know (some more clearly than others) whether and how their data security was compromised by this OpenSSL flaw that has...
by e-Patient Dave | Mar 26, 2014
It’s five years since the ARRA/HITECH legislation was passed that pretty much mandates that American medicine has to computerize. Policies created since then have been enormously effective at moving adoption forward. We still need vast improvements of the user...
by e-Patient Dave | Mar 25, 2014
Five years ago last week, I posted this. A lot has changed since then. Next week I’ll be re-posting what happened next, back then. The subject is still just as valid, so do think about it. Here’s a “reprint”: _________________ I want you to...
by Casey Quinlan | Nov 18, 2013
In 1517, Martin Luther nailed his “Ninety-Five Theses” to the wooden doors of Wittenberg Cathedral, sparking a global reformation of the Christian faith that’s still going on today. In the 1950s and 1960s Dr. Martin Luther King Jr. worked to drive inclusion for all in...
by John M. Grohol, Psy.D. | Aug 27, 2013
A few months ago, I complained about the layout of one of my doctor’s offices. There’s a rough layout drawing of the office waiting area to the side there. I’m standing just in front of the number 1, while people are sitting along the wall behind me....
by e-Patient Dave | Jul 15, 2013
Just a quick note on something I’m happy to say we’ve been hollering here for years: A lot of what passes for “evidence” from peer reviewed medical journals is scientifically weak, and has never been verified by an independent lab. That means...
by e-Patient Dave | Jun 17, 2013
Last year during TEDMED 2012, in “The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data, we covered the vitally important news that a lot of medical research has gone missing, leading to a severely corrupted foundation for evidence-based...
by Susannah Fox | May 28, 2013
The Pew Research Center will release a new report about caregivers in June. As we prepare, I’m looking for stories to share with reporters so they can better understand the context for our data. If you have experience caring for a family member, a friend, or a...
In Memory of Nancy Finn: e-Patient, Advocate, Author, SPM SupporterJuly 16, 2025
A cure for what killed Doc Tom! Can people afford it?June 27, 2025
Learning Health Systems Empower Every American to Actually Make America Healthy Again Together, Part 2May 29, 2025
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