Society for Participatory Medicine is proud to announce the second in our series of Patient Journey conferences: The Amyloidosis Patient Journey. www.zeffy.com/en-US/ticket... #participatorymedicine #spm #amyloidosis
A story that has long needed to be in the literature - w the first DOI for the "e-Patient White Paper," included as a multimedia attachment. Lead author @amyprice.bsky.social - I helped. GOBS of historical information. @weblogsky.com @drdannysands.bsky.social @susannahrfox.bsky.social
Society for Participatory Medicine@participatorymed.bsky.social · last mo.A tribute to Dr. Tom Ferguson's 2007 e-patient white paper. His "equipped, enabled, empowered, engaged" vision shaped participatory medicine — often without attribution, letting the term's meaning drift. This article restores that intellectual genealogy. jopm.jmir.org/2026/1/e97659 #SPM
Democrats should ensure that voters hear this so much it haunts their dreams this fall.
Acyn@acyn.bsky.social · 4mo agoTrump on Iran War: Reporter: What extent are Americans’ financial situation motivating you to make a deal? Trump: Not even a little bit. I don't think about Americans’ financial situation
We just announced the launch of a new reporting team in California — our sixth regional investigative hub! It’s the latest step we’re taking to expand ProPublica and meet the moment with more journalism. Here’s why I’m so excited about this… 1/8
New: Thomson Reuters, which runs the CLEAR database ICE uses, fired a longstanding employee for speaking out against ICE, a new lawsuit says. Billie Little led an internal effort raising concerns; was fired. We've shown CLEAR is linked to ICE's Palantir tool www.404media.co/thomson-reut...
Thomson Reuters Fired Worker For Speaking Out About ICE, Former Employee Says
“When I saw evidence that our products were being used to harm people and undermine the law, I did what anyone should do—I raised the alarm. Thomson Reuters’ response was to fire me.”
404media.co
"The goal of writing is not to have written. It is to have increased your understanding, and then the understanding of those around you." alexhwoods.com/dont-...
Péter Magyar, who unseated Hungarian Prime Minister Viktor Orbán Sunday in a landslide, shared a bombshell with reporters that the outgoing leader had diverted taxpayer funds to bankroll the American Conservative Political Action Conference. trib.al/ct7GGV3
“You’re a U.S. senator!” Bernie stops Noem’s replacement from literally trying to fight someone👇🏽 This should go great
'Tis the season! During a trip to the US this week, our CEO, Rachel Dunscombe paid a visit to a very festive ePatient Dave deBronkart... 🎅 #Christmas #Holidays #HoHoHopenEHR @ukpenguin.bsky.social @epatientdave.bsky.social
Here’s the thing, emerging scientists aren’t going to flee to do science elsewhere…they just won’t do the science. We will lose at least one, if not two generations of knowledge if we don’t get this shit sorted out immediately.
Meade Krosby@meadekrosby.bsky.social · 9mo agoMy teen, who had dreamt of being an astrophysicist, just told me he wants to go to law school because, “Science isn’t going to be a priority in the US in the future…I don’t want a job where I’ll be constantly worried my funding will be taken away.” Gutting. How many future scientists have we lost?
I'm delighted to say we have won the Queen Elizabeth Prize for Education with our work on OpenSAFELY, inventing new methods that let researchers analyse NHS GP data while protecting everyone's privacy, and with complete transparency, in a hugely productive platform! www.ox.ac.uk/news/2025-11...
OpenSAFELY team awarded Queen Elizabeth Prize for Higher and Further
Oxford’s OpenSAFELY team wins the prestigious Queen Elizabeth Prize for revolutionising secure NHS data research, protecting patient privacy while unlocking life-saving health insights.
ox.ac.uk
This book is superb. I have a LOT of thoughts about patient empowerment and restructuring the health system (to benefit both patients and docs), and I would have written this book, if I were able. But I don't have the skills of @crblease.bsky.social! open.substack.com/pub/patients...
To understand medicine's future you must read Dr. Bot
Charlotte Blease nails #PatientsUseAI in a beautifully composed work. Don't miss it.
open.substack.com
What happens when patients use chatbots for medical advice. Great @nytimes story by @teddyrosenbluth.bsky.social & @maggieastor.bsky.social. I'm quoted, along with @adamrodmanmd.bsky.social & @epatientdave.bsky.social www.nytimes.com/2025/11/16/w...
Frustrated by the Medical System, Patients Turn to A.I.
nytimes.com
Honest question: WTAF is the rationale for eliminating a safety rule on an amputating device?
Robert Reich@rbreich.bsky.social · 11mo agoThe Consumer Product Safety Commission just scrapped a table saw safety rule that could have prevented amputation injuries and saved over $2B in healthcare costs a year. This comes months after Trump fired all three Democratic CPSC members. "Make America Safe Again."
This is what happened with my family… A comment on another excellent post from @susannahrfox.bsky.social Honest question: does the place where you go for care actually care about care? Add your story, good or bad, in another comment.
Susannah Fox@susannahrfox.bsky.social · 11mo ago"Question: what HAPPENS when you stand your ground and tell the hospital it’s not safe for my father to be sent home? The forces pushing for discharge can be economic, and that’s a spine-stiffener for some hospitals." - @epatientdave.bsky.social susannahfox.com/2025/10/22/c...
Here’s What Happened When ProPublica Reporters Tried to Find Out Where a Popular Prescription Drug Was Made
Here’s What Happened When ProPublica Reporters Tried to Find Out Where a Popular Prescription Drug Was Made
We wanted to know where a widely used prescription drug that treats high cholesterol was manufactured and whether the factory had quality issues. The search led to a labyrinth of company names and dat...
propublica.org
I look forward to moderating a panel, co-hosted by JoPM/@jmirpub.bsky.social/ @s4pm.bsky.social on e-patients & evolving use of tech over time. Join @epatientdave.bsky.social @gfry.bsky.social @denisesilber.bsky.social @amyprice.bsky.social and me. landingpage.jmirpublications.com/how-digital-...
"There is no climate of fear without capitulation." Fight.
Sam Bagenstos@sbagen.bsky.social · last yr.This is perceptive and urgent.
It was a meeting of the minds last week at @harvard.edu! @cait-desroches.bsky.social spoke on Thursday at the DCI Network conference on Digital Patient Engagement. Pictured from L to R with Cait: @amyprice.bsky.social, Brad Crotty, MD, @epatientdave.bsky.social, Danny van Leeuwen, MPH #medsky
This was the most intelligent, perceptive discussion I've ever had about patient empowerment with someone who's not primarily *in* healthcare. And that's a significant sign: I've always said that the more we "liberate" access to tools and data, the more healthcare will become what we want
Microsoft Research@msftresearch.bsky.social · last yr.In Ep. 3 of “The AI Revolution in Medicine, Revisited,” guests @epatientdave.bsky.social and Christina Farr discuss the growing role of AI in supporting more engaged patients and the evolving relationship between technology, clinicians, and consumers: msft.it/6010SBJ2n
Woohoo! Fabulous episode! #PatientsUseAI Host Peters Lee and I had lots of laughs and deep thought, and Chrissy Farr is amazing - I knew that her insights come from her own experience as a patient and pediatric mom.
🎁 link: wapo.st/4izIIpf
Opinion | Trump is ending democracy promotion abroad even as he assaults democracy at home
Defunding Voice of America and Freedom House only helps the world’s despots.
wapo.st
Max Boot@maxboot.bsky.social · last yr.There is a sickening symmetry to President Donald Trump’s actions: While undermining U.S. democracy at home, he is also trying end U.S. government support for democracy abroad. www.washingtonpost.com/opinions/202...
Over the past several weeks, ProPublica has identified dozens of people who worked for DOGE. #ICYMI: We just added 20 names to our tracker, bringing the total to 66.
Elon Musk’s Demolition Crew
Elon Musk, the world’s richest man, has been unleashed on federal agencies. ProPublica is attempting to document who is working with him and what they are doing.
propub.li
Man who self-describes as "happens to have two cancers" says this about #PatientsUseAI. Hey @burtrosen.bsky.social - I've been thinking (for real) - would you call this "DIY healthcare" or "DTC" (direct to consumer) or "patient autonomy" or what? (Legit question - been pondering this on LinkedIn)
Burt@burtrosen.bsky.social · 2y agoI’m kind of obsessed. It might be the greatest patient health care tool ever!
@burtrosen.bsky.social Me LETTING you be part of it?? Hahahaha ... you're just a RANDOM BLINKIN' EXEMPLAR, dude! You just DO what everyone SHOULD be doing, because we can! Send an update of your latest self-empowered shenAInigans so we can update your history!
Burt@burtrosen.bsky.social · 2y agoYet again @epatientdave.bsky.social leads a patient revolution in healthcare and AI. Thanks for letting me be a part of it!
“#AI is my helper now.” @epatientdave.bsky.social @burtrosen.bsky.social Two amazing “hunks” of the ‘patient-led revolution’ make it to Men’s Health. Love this. 👏🏽👏🏽👏🏽👏🏽👏🏽 #pinksocks #hcldr
Burt@burtrosen.bsky.social · 2y agoYet again @epatientdave.bsky.social leads a patient revolution in healthcare and AI. Thanks for letting me be a part of it!
I am happy to say the "Followers only" reply setting is getting implemented. We're also adding a way to set default reply settings If you want your posts to default to "Followers only," that'll become an option
@Lygeia is here too! @lygeia-r.bsky.social I can't be on the #HITSM chat at noon ET today 1/31, but here are the details. @healthcareittoday.com Tag them to get on their BSky HIT list - the place to be! Love to be seeing the smooooth writing of John Lynn @techguy.healthcareittoday.com again!
Lygeia Ricciardi @lygeia-r.bsky.social · 2y agoI just dropped everything to join Bluesky when I saw there was an #HITSM chat tomorrow. I miss my peeps! 🥰 @healthcareittoday.com