Patients are increasingly using generative AI. @hugoc.bsky.social and @thelizarmy.bsky.social introduce “Critical AI Health Literacy” as a new skill set for patients seeking agency and equity in the digital age of medicine. Read more on @nam.edu: nam.edu/perspectives... #PatientsUseAI #MedSky

The name of the game is "Publish or Perish" and some of our team's researchers have been playing it for decades. In October, @ctlin.bsky.social, @thelizarmy.bsky.social and @epatientdave.bsky.social gathered in our Boston office and played this all-too-real board game from @chethan.bsky.social.

Adam Hayden, a prolific observer of his own condition, took a bad situation and did ‘good things with it’ RIP @adammarc.bsky.social 💔 #BTSM @thelizarmy.bsky.social @sabine-nj.bsky.social @mcintose.bsky.social @shawncarey42.bsky.social @stuartselby.bsky.social www.statnews.com/2025/12/22/a...

A first-person remembrance of @adammarc.bsky.social—brain cancer advocate, writer, punk philosopher & dear friend. Our friendship shaped my approach to survivorship through his guiding truth: “The best way through fear is familiarity.” www.thelizarmy.com/blog/adam-ha...

NEW: Solutions for Increased Adoption of #PatientPortal Shared Access: A Human-Centered Design Approach Using the Double Diamond Model www.thieme-connect.de/products/ejo... #MedSky #HumanCenteredDesign #HCI #usability @thelizarmy.bsky.social @cait-desroches.bsky.social @opennotes.org

We are incredibly grateful for the community we have created - it's time to say goodbye to our regularly scheduled chats. With ❤️, the #BTSM chats co-founder & organizer team @thelizarmy.bsky.social @sabine-nj.bsky.social @mcintose.bsky.social @shawncarey42.bsky.social @stuartselby.bsky.social

If you've known OpenNotes since the beginning, you know Tom Delbanco, MD. For 55 years, he has been transforming primary care. Register for his upcoming Grand Rounds Lecture: bit.ly/46HXlT2 📅 Thursday, October 16th ⏰ 8am to 9am Eastern 📽️ Recording available 🎟️ Free #MedSky #WhyInformatics

About how many patients are using AI to receive health information? 1️⃣ Approximately 1 in 7 adults over 50 according to University of Michigan 2️⃣ Around 1 in 4 adults under age 30 according to @kff.org Read more from @thelizarmy.bsky.social in @npr.org: www.npr.org/sections/sho... #PatientsUseAI

It's @thelizarmy.bsky.social's first day back at school! Liz Salmi, AS, has first-authored and co-authored 30 peer reviewed articles in prominent journals like @jama.com and @jmirpub.bsky.social We can't wait to see what Liz does next as a pioneering patient-researcher. #MedSky #BTSM #CanSky

After 18 years away (thanks, #braincancer), I'm going back to school! My major has now changed from Communications to Cognitive Science. Wish me luck! TL;DR: I'll still be working 2 days/week with @opennotes.org, and going to school full time. Details: www.thelizarmy.com/blog/im-goin...

Our own Dr. Sigall Bell has been named by Becker's Hospital Review as a Patient Safety Expert to Know. Dr. Bell has.... 👏 Trained over 1,000 clinicians in disclosure practices 👏 Developed the “OurDX” diagnostic engagement tool Read more: www.beckershospitalreview.com/hospital-man... #MedSky

NIH: After review, we note that you have a large unspent balance on your grant. Please explain immediately. me: well, uh, yeah, one reason we're not spending on that grant is because NIH terminated it in May along with all the rest of federal funding to Harvard, maybe you don't remember

Quite a few patient advocates know I’m a go-source for PDF copies of paywalls articles. #academicsky

Thanks so much @clarefuller.bsky.social Loved partnering with my amazing friend @thelizarmy.bsky.social on this one. Excited for our chat!

@thelizarmy.bsky.social and @cait-desroches.bsky.social sit down with @colinhung.bsky.social of @swaay.health to dispel misconceptions about open notes. Not only are open notes not a detriment — they are actually beneficial to patients and clinicians. Listen in: swaay.health/2025/07/21/w...

Y'all...my pilot study just reached 100 participants. Entirely social media-based recruitment (2 waves); but the engagement, reception, and quality of participation far exceeded my expectations after the IRB saga. Wow. This is filling my cup during these dark times for science. #PhDSky #AcademicSky

Enough time has passed that I feel its OK to share this great email I received from my boss many months ago: "The response to the reviewers is 🤟🔥🔥🔥." One of my proudest moments. #academicsky

“Most people don’t speak radiology,” @thelizarmy.bsky.social said. “When I have received imaging results on my own, the technical language can feel impenetrable. It can be confusing, scary, or misleading.” Read more: www.uchealth.org/today/can-ai... #cansky #medsky #btsm #patientexperience

Thanks, @theabta.bsky.social and the incomparable @thelizarmy.bsky.social for today's engaging webinar on participating in research and the clear message that we can all participate! Liz, I love your reminder that we all have the capacity to be curious and become researchers as we explore! #BTSM

Every day is #BringYourCattoWorkDay when your office is wherever your laptop is—and when your cat is Mark. He’s a quiet, judgment-free partner when I’m reading new research or editing manuscripts, which is more than I can say for some peer reviewers. #reviewer2 #reviewerMew #academiclife

More from the AMIA Clinical Informatics Conference #CIC2025 @thelizarmy.bsky.social with Rob Turer @scottmacdonald86.bsky.social and Bryan Steitz Read their latest paper on refresh and messaging behaviors as possible signs of patient anxiety. 😵‍💫 www.opennotes.org/research/rep... #medsky #cansky

When you get great minds in a room, that's when innovation happens! @chethan.bsky.social and @thelizarmy.bsky.social saw Christopher Longhurst, Executive Director of Jacobs Center for Health Innovation @jchi-ucsd.bsky.social at the AMIA Clinical Informatics Conference #CIC2025 #medsky #cansky

Honored to be a part of this community. Thanks, @thelizarmy.bsky.social for introducing me to #BTSM in 2014, onboarding me in 2018, and passing on the baton in 2023. @mcintose.bsky.social, @shawncarey42.bsky.social, @stuartselby.bsky.social and I will do our best to keep this movement going.

#BTSM is celebrating 12 years of chats TODAY! 🥳🎉 The inaugural chat took place on May 19th, 2013. Thank you, Charlie Blotter and @thelizarmy.bsky.social for getting this movement started. We have helped + interacted with hundreds of individuals over the years. (Graphic by @stuartselby.bsky.social)

Maybe the real impact factor is the friends we made along the way. #academicsky

🚨 Registration ends today, April 30th, at 3pm PDT, 6pm EDT! AI Topics, Tools, and Use Cases for Serious Illness Care with @thelizarmy.bsky.social @epatientdave.bsky.social and @gracecordovano.bsky.social 🗓️ Thurs, May 1, 2025 🕝 10:45am PT Sign up here: coalitionccc.org/CCCC/Educati... #cansky

About every other month over the years, someone will send me a link to the video of the guy playing violin during #brainsurgery. At first I was like, “that’s nice.” But now after living with brain cancer for 18 years, I’m like, “You know, for my next surgery, I’m totally going to play violin.”

Public comment, and health transparency, matters. Read our opinion on Robert F Kennedy Jr's recent attempt to eliminate public comment requirements for key decisions of the HHS in @bmj.com @thelizarmy.bsky.social @cait-desroches.bsky.social www.bmj.com/content/389/... #medsky #cansky #btsm

Thank you to @swaay.health for recognizing @opennotes.org as Patient Experience Program of the Year! We were honored to be nominated for the award by the community. #PatientExperience #PatientEngagement #medsky #cansky @thelizarmy.bsky.social @chethan.bsky.social @cait-desroches.bsky.social

Here's an advance directive I hadn't thought about before @taylorcoffman.bsky.social wrote this: taylorcoffman.substack.com/p/illness-an...

Prompting matters, not just the model 👉🏼 Open access research paper on prompts+models with evaluation from a healthcare provider *and* patient perspective here: bit.ly/3G0M9XP (Co-authored with @thelizarmy.bsky.social!)

PCP: I want to increase your dose of gabapentin for #RLS but the tablet is huge. Pts can’t swallow it. I’m going to prescribe 2 smaller tablets. Me: Have you seen two 750mg tablets of Keppra side by side? Add 200mg of Vimpat & that’s what I’ve been taking in 1 gulp for seizures for 17 yrs. PCP: 😳

👇🏽authoritariansim Via @bmj.com by @thelizarmy.bsky.social

“We must not abandon public comment” by @thelizarmy.bsky.social et al. In @bmj.com www.bmj.com/content/389/...

Thank you @thelizarmy.bsky.social and the #opennotes team for highlighting this issue--and @bmj.com for publishing it. Eliminating opportunity for patients to provide input is contrary to supposed transparency goals.

“The ability to participate in regulatory decision making is not a privilege: it’s a legal requirement and a fundamental right in a democratic society.” Essential commentary from @thelizarmy.bsky.social www.bmj.com/content/389/...

A friend at NIH received notice that the National Library of Medicine is terminating its bioinformatics program

Tagging for 🧪 🩺 🛟

Gotta threaten my mom with no phone calls until she reads my papers these days. #academicsky #rfk www.bmj.com/content/389/...

Exciting new initiative from our team here at @opennotes.org! So much hype these days around AI and ambient documentation. We want to bring things back to an earlier era. Even earlier than you think. #opennotes #medsky www.opennotes.org/news/retro-n...

Who will be joining us this Sunday for the inaugural #btsmsky chat? #btsm #oncosky #medsky #ayasm 🔹 Sunday, 3/30, 🔹 4 pm PT; 7 pm ET 🔹Topic: Getting resourceful: How resources can help the brain tumor community to be better equipped, informed and empowered. #btsm #oncosky #medsky #ayasm

Out of 16,005 patients, only HALF of them knew they could share portal
access with care partners. This needs to change. Join OpenNotes for a webinar with the Institute for Patient- and Family-Centered Care on April 22nd at 12pm Eastern: us02web.zoom.us/meeting/regi... #medsky #cansky #btsm

With tools like AI and knowledge from increased access to medical records, patients are in a new DIY reality. OpenNotes has proven through over a decade of research that the benefits of access to medical notes have outweighed the drawbacks. www.medpagetoday.com/opinion/seco... #medsky

⚠️ The first ever #BTSM #skychat will take place on March 30, 2025, 4 pm PT / 7 pm ET. We sincerely hope the #bsky #braintumor community will continue to contribute to the more than a decade-long history of #btsm chats. #oncsky #ayacsm #academicsky #medsky #cansky #neurooncology #neurosurgery

When two friends separately send you photos of each other's talk. @cdfuller.bsky.social @thelizarmy.bsky.social

"Think about it...who better to find an error than the patient? My two eyes on my one chart versus my doctor's two eyes on 1,000 charts?" — @thelizarmy.bsky.social Watch Liz at Quality Talks in 2018: www.youtube.com/watch?v=yDHA... #PatientSafetyAwarenessWeek #medsky

This is not good. Clearly Hegseth doesn’t realize the massive scope of what DOD funds, including cancer research—an effort to help war veterans who’ve been exposed to harmful chemicals as a result of defending the US. So shortsighted.

That feeling when you meet up with a fellow #MedX alum and get a group of academics re-thinking the capabilities of patients when we use #healthAI for good. @hugooc.bsky.social is the GOAT! Thank you @riceuniversity.bsky.social for hosting us.

journals when you ask about the status of your manuscript

🎉 Celebrating 1 Year of the Lab! 🎉 Launched on February 27, 2024, at #ViVEEvent, the Lab is a hub for innovation at the intersection of clinical documentation, patient engagement, and AI. www.opennotes.org/news/celebra... @cait-desroches.bsky.social @chethan.bsky.social @thelizarmy.bsky.social