Reposted by e-Patient DaveSociety for Participatory Medicine @participatorymed.bsky.social · 04/08/2026Society 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 011
e-Patient Dave @epatientdave.bsky.social · 12/08/2026A 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 042
Reposted by e-Patient DaveKevin M. Kruse @kevinmkruse.bsky.social · 12/05/2026Democrats should ensure that voters hear this so much it haunts their dreams this fall. 9333021062
Reposted by e-Patient DaveCharles Ornstein @charlesornstein.bsky.social · 12/05/2026We 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 527152
Reposted by e-Patient DaveJoseph Cox @josephcox.bsky.social · 14/04/2026New: 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...404media.coThomson 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.” 15940508
Reposted by e-Patient DaveEsther Schindler @estherschindler.bsky.social · 14/04/2026"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-... 186
Reposted by e-Patient DaveThe New Republic @newrepublic.com · 14/04/2026Péter 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 10234881431
Reposted by e-Patient DaveThe Tennessee Holler @thetnholler.bsky.social · 05/03/2026“You’re a U.S. senator!” Bernie stops Noem’s replacement from literally trying to fight someone👇🏽 This should go great 109393583511
Reposted by e-Patient DaveopenEHR @openehr.bsky.social · 01/12/2025'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 061
Reposted by e-Patient DaveColette Delawalla, PhD @cdelawalla.bsky.social · 07/12/2025Here’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. 13633232
Reposted by e-Patient DaveBen Goldacre @bengoldacre.bsky.social · 26/11/2025I'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...ox.ac.ukOpenSAFELY team awarded Queen Elizabeth Prize for Higher and FurtherOxford’s OpenSAFELY team wins the prestigious Queen Elizabeth Prize for revolutionising secure NHS data research, protecting patient privacy while unlocking life-saving health insights. 919151
e-Patient Dave @epatientdave.bsky.social · 24/11/2025This 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...open.substack.comTo understand medicine's future you must read Dr. BotCharlotte Blease nails #PatientsUseAI in a beautifully composed work. Don't miss it. 041
Reposted by e-Patient DaveBob Wachter @bobwachter.bsky.social · 17/11/2025What 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...nytimes.comFrustrated by the Medical System, Patients Turn to A.I. 051
e-Patient Dave @epatientdave.bsky.social · 27/10/2025Honest question: WTAF is the rationale for eliminating a safety rule on an amputating device? 021
e-Patient Dave @epatientdave.bsky.social · 23/10/2025This 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. 010
Reposted by e-Patient DaveCharles Ornstein @charlesornstein.bsky.social · 23/10/2025Here’s What Happened When ProPublica Reporters Tried to Find Out Where a Popular Prescription Drug Was Madepropublica.orgHere’s What Happened When ProPublica Reporters Tried to Find Out Where a Popular Prescription Drug Was MadeWe 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... 58948
Reposted by e-Patient DaveDr. Danny Sands @drdannysands.bsky.social · 19/10/2025I 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-... 253
e-Patient Dave @epatientdave.bsky.social · 11/09/2025"There is no climate of fear without capitulation." Fight. 020
Reposted by e-Patient DaveOpen Notes Labs @handle.invalid · 30/06/2025It 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 111
e-Patient Dave @epatientdave.bsky.social · 18/04/2025This 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 030
e-Patient Dave @epatientdave.bsky.social · 18/04/2025Woohoo! 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. 020
Reposted by e-Patient DaveMax Boot @maxboot.bsky.social · 17/03/2025🎁 link: wapo.st/4izIIpfwapo.stOpinion | Trump is ending democracy promotion abroad even as he assaults democracy at homeDefunding Voice of America and Freedom House only helps the world’s despots. 06415
Reposted by e-Patient DaveProPublica @propublica.org · 17/03/2025Over 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.propub.liElon Musk’s Demolition CrewElon 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. 521675603
e-Patient Dave @epatientdave.bsky.social · 14/03/2025Man 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) 120
e-Patient Dave @epatientdave.bsky.social · 14/03/2025@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! 020
Reposted by e-Patient DaveDr Rasu Shrestha @rasushrestha.bsky.social · 11/03/2025“#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 131
Reposted by e-Patient DaveP(aul) Frazee @pfrazee.com · 06/02/2025I 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 821244822880
e-Patient Dave @epatientdave.bsky.social · 31/01/2025@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! 140
Reposted by e-Patient DaveHealthcare IT Today @healthcareittoday.com · 30/01/2025Who's going to join us tomorrow for the first ever #HITsm chat on Bluesky? Details: dlvr.it/THh4fB Invite your friends. #HITsm 162
Reposted by e-Patient DaveLygeia Ricciardi @lygeia-r.bsky.social · 30/01/2025I just dropped everything to join Bluesky when I saw there was an #HITSM chat tomorrow. I miss my peeps! 🥰 @healthcareittoday.com 4141
Reposted by e-Patient DaveHealthyThinkerJSK @healthythinkerjsk.bsky.social · 30/01/2025Can private sector serve up sufficient #healthmedia to compensate for public sector gaps? Reflections on repeated #404Error messages from #publichealth govt websites on #CDC #NIH & WhiteHouse.gov (looking for a Jill Biden speech on #womenshealth at #JPM2025) bit.ly/3Q0cZ4h #hcsm #healthliteracybit.lyCan the Private Sector Serve Up Sufficient Health Media to Compensate for Public Sector Gaps? - HealthPopuli.comIn researching several .gov websites from last Monday 20th January 2025, I had an ongoing frustrating user experience in being faced with “404 Error” messages like this one from WhiteHouse.gov. “Presi... 041
e-Patient Dave @epatientdave.bsky.social · 31/01/2025Hey everybody, Jane's here! THAT Jane - Jane Sarasohn-Kahn, aka elsewhere as @HealthyThinker! Follow, you will. @healthythinkerjsk.bsky.social 020
e-Patient Dave @epatientdave.bsky.social · 13/01/2025I'd even say we need to stop using the word "experts," because, frankly, idiots no longer trust experts! I'm starting to think we need to come back down to the eighth grade insult-war level like them and argue in terms of "You're so stupid you think Bambi is a fish," to quote Gilda Radner 011
Reposted by e-Patient DaveEric Topol @erictopol.bsky.social · 13/01/2025A new resource rating >50,000 foods from 3 grocery stores (Walmart, Target, and Whole Foods) for degree of processing and breakdown of ingredients www.nature.com/articles/s43... Website for consumers www.truefood.tech 26423103
e-Patient Dave @epatientdave.bsky.social · 13/01/2025New post on the #PatientsUseAI Substack, by Gilles Frydman (@kosherfrog.bsky.social), the pioneering #PatientEmpowerment guy who in 1995(!) created ACOR, which helped save my life. Today he's *hugely* into generative AI for patients. Check it out! patientsuseai.substack.com/p/patientsus...patientsuseai.substack.com#PatientsUseAI: We seek collaboration, not controlAI’s potential to revolutionize healthcare dominates headlines and academic journals. But one critical voice is underrepresented: patients. By Gilles Frydman, pioneer (since the 1990s) of patient comm... 021
Reposted by e-Patient DaveRuth Ann Crystal @drruth.bsky.social · 09/01/2025Primary care fields Pediatrics, Family Practice & Internal Medicine are having trouble filling their residency slots. Low pay, high admin burdens (prior authorizations w/low support) make these fields undesirable leaving many communities without access to essential care. buff.ly/4fQsFS9 medsky 🛟buff.lyShortage of primary care doctors in U.S. comes down to money — and respectMore medical schools say they will no longer charge tuition. But evidence suggests it will take a lot more than a free ride. 47220
Reposted by e-Patient DaveChukwuma Onyeije, MD @chukwumaonyeije.bsky.social · 07/01/2025"Zak’s involvement illustrates something exquisitely important: nothing about patient empowerment is a rejection of doctors." I agree entirely, Dave! 001
e-Patient Dave @epatientdave.bsky.social · 07/01/2025I'm thrilled to announce: I authored a four page article on #PatientsUseAI in Men's Health magazine, on newsstands now! It's GREAT to see patient empowerment in a well edited consumer magazine. Stories from the #PatientsUseAI Substack, and more! patientsuseai.substack.com/p/patientsus... #medskypatientsuseai.substack.com#PatientsUseAI is in Men's HealthWe're mainstream! Stories from this blog make the national newsstand 1113
Reposted by e-Patient DaveMark Cuban @mcuban.bsky.social · 02/01/2025Great source of news and info. Give it a follow 812730368
Reposted by e-Patient Daveemilykg1.bsky.social @emilykg1.bsky.social · 01/01/2025Yet another powerful example of how people living with serious illnesses (the "heartbeat...of the cells they studied") can change the game in research and drug development www.nytimes.com/2024/12/22/h...nytimes.comFighting to Avoid Her Mother’s Fate, for Her Daughters’ SakeA mutant gene is coming to steal Linde Jacobs’s mind. Can she find a way to stop it? 041
e-Patient Dave @epatientdave.bsky.social · 02/01/2025Hey #MedSky I'm amazed nobody's yet posted this excellent piece, which I just stumbled onto on some other platform. It's good! (Why isn't Becker's VP/Editorial Molly Gamble over here yet??) www.beckershospitalreview.com/hospital-man...beckershospitalreview.com5 questions looming over healthcare leaders as 2025 begins 130
e-Patient Dave @epatientdave.bsky.social · 24/12/2024Such an honor to be part of your work this past year, @yuriquintana.com Thank you for the invitation, and here's hoping we can find a way to continue the collaboration in '25! 051
Reposted by e-Patient DaveLucien Engelen @lucienengelen.com · 21/12/2024It has been a while since I’ve seen @erictopol.bsky.social so excited about a development in as in this podcast with @mcuban.bsky.social and rightfully so IMHO. Trump should hire him as his healthcare-tzar ;-) will save more than DOGE all together AND oppose DOGE without adverse “side effects“ 151
Reposted by e-Patient DaveDaniel Kraft, MD @danielkraft.bsky.social · 22/12/2024A remarkable read- The family story of a carrier of the gene for frontotemporal dementia (FTD) is moving the field towards potential therapiesnytimes.comA Woman With a Rare Gene Mutation Fights to Avoid Her Mother’s Fate (Gift Article)A mutant gene is coming to steal Linde Jacobs’s mind. Can she find a way to stop it? 022
Reposted by e-Patient DaveNicholas A. Christakis @nachristakis.bsky.social · 22/12/2024Hello mother? Hello father? In the first hour after an earthquake, who you call reveals something important about your social network ties. An earthquake is a natural experiment in stressing one's network. academic.oup.com/pnasnexus/ar... #HNL work from 2023 in @pnasnexus.orgacademic.oup.comEmergency communications after earthquake reveal social network backbone of important tiesAbstract. Social networks provide a basis for collective resilience to disasters. Combining the quasi-experimental context of a major earthquake in Ya’an, 04817
Reposted by e-Patient DaveTechCrunch @techcrunch.com · 19/12/2024Perplexity has reportedly closed a $500M funding roundtcrn.chPerplexity has reportedly closed a $500M funding roundAI-powered search engine Perplexity has reportedly closed a $500 million funding round, valuing the startup at $9 billion. Bloomberg, citing sources familiar, reports that the round was led by Institutional Venture Partners, and that it closed earlier in… 2487
Reposted by e-Patient Davemartinaenglington @martinaenglington.bsky.social · 12/12/2024It is uniquely a US problem. 011
