Sign in

Liz Salmi

@thelizarmy.bsky.social
2.8K followers 390 following 172 posts

Be one, do one, teach one. Co-Investigator for opennotes.org. Living with brain cancer since 2008. Bringing punk rock to health care. Blog: thelizarmy.com

PostsRepliesMedia
Reposted by Liz Salmi
American Association for Cancer Research (AACR) @theaacr.bsky.social · 02/06/2026
Have questions about cancer care? You may have to wait until your next appointment, but some patients are turning to AI chatbots. Learn more about the potential and risks of AI for medical information in Cancer Today. buff.ly/MbVhUrK @stephenornes.bsky.social @thelizarmy.bsky.social
021
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 16/02/2026
@thelizarmy.bsky.social offers insights from beta-testing OpenAI’s new Health GPT. As a longtime advocate for healthcare transparency who shares her health records publicly, she urges others to think critically before doing the same. Read more in @stat-statnews-com.1440.news:
statnews.com
Why I decided to share all my health information with ChatGPT Health
“I don’t think people should have to go through 18 years of brain cancer to understand their own health records,” writes Liz Salmi.
012
Liz Salmi @thelizarmy.bsky.social · 20/01/2026
Spring school semester kicked off today! Feels weird taking philosophy without being able to back channel with @adammarc.bsky.social. Missing him every day. #btsm #braincancer
040
Liz Salmi @thelizarmy.bsky.social · 12/01/2026
I spent the weekend taking OpenAI’s new #HealthGPT for a spin. 🤓 Naturally, I connected 3 health systems, uploaded a 4,800-page PDF of my medical history & ran my own mini-study with custom prompts. Curious about the experiment, my “protocol” & what didn’t work? www.thelizarmy.com/blog/my-firs...
Liz Salmi holding a guest badge with information redacted in San Francisco.
264
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 06/01/2026
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
022
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 02/01/2026
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.
054
Reposted by Liz Salmi
Dr Rasu Shrestha @rasushrestha.bsky.social · 31/12/2025
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...
statnews.com
An advocate who offered a window on the experience of living with brain cancer dies at 43
Adam Hayden, a patient advocate and the subject of an earlier profile in STAT, has died at age 43.
164
Liz Salmi @thelizarmy.bsky.social · 29/12/2025
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...
Adam Hayden and Liz Salmi at Stanford.
1144
Reposted by Liz Salmi
Applied Clinical Informatics Journal @aci-journal.medsky.social · 07/12/2025
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
034
Reposted by Liz Salmi
Brain Tumor Social Media Chat @btsmchat.bsky.social · 07/12/2025
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
The Friends We Made Along the Way: 
Sunsetting Brain Tumor Social Media (#BTSM) Online Chats
December 7, 2025
Dear Members of the #BTSM Community,
It is with both gratitude and reflection that today we announce the decision to sunset the regular Brain Tumor Social Media (#BTSM) online chats. 
The #BTSM community was founded in May 2012 to foster support, provide education, and advocate for the brain tumor community, and has served as a vital online gathering place for patients, care partners, clinicians, researchers, and advocacy organizations. Through monthly live Twitter chats (and later other online formats), participants could share experiences, ask questions, and discuss topics related to diagnosis, treatment, research, quality of life, survivorship, and end of life. #BTSM has always been a grassroots initiative—created, moderated, and sustained by patients and care partners committed to connection and advocacy. 
Rationale for Sunsetting #BTSM Chat
This decision was made after careful consideration of several key factors, and #BTSM advance care planning:
•	The social media landscape has changed significantly since #BTSM began, and patterns of engagement have evolved accordingly.
•	Many of our dedicated moderators and organizers are transitioning into new professional and personal roles, making it increasingly difficult to sustain the regular chat schedule.
•	The needs of the brain tumor community continue to evolve, and the traditional live-chat format no longer fully reflects the ways individuals connect and share information online.
After much discussion, the organizer team determined that this is an appropriate moment to close this chapter of scheduled #BTSM chats, while honoring the extraordinary legacy of community and advocacy they represent. 
Gratitude to the #BTSM Community
We extend our deepest appreciation to every person who participated in #BTSM chats over the years. Whether you shared your story, offered support, asked a question, or simply followe…Recognition of #BTSM Moderators
The power of #BTSM has always come from its people—the patients, care partners, clinicians, researchers, advocates, and friends—those whose dedication to tuning in, whose curiosity to learn, willingness to help, kindness to strangers, and belief in a movement have defined this effort. The real #BTSM are the friends made along the way. 
But the success and longevity of #BTSM would not have been possible without the extraordinary efforts of its organizers and moderators. Their dedication, time, and commitment - often undertaken quietly and without recognition - sustained the community, provided steady guidance throughout its evolution, and has been instrumental in fostering a safe, inclusive, and supportive environment for all participants. We gratefully acknowledge the following individuals for their years of service (from - to) and leadership:
•	Charlie Blotner, co-founder (2012 - 2020)
•	Liz Salmi, co-founder (2012	- 2021)
•	Adam Hayden (2017 - 2021)
•	Jeremy Pivor (2018 - 2021) 
•	Sabine Schwab (2018	- present)
•	Lisa O’Leary (2018 - 2024)
•	Ashley Love Sumrall (2020 - 2022) 
•	Emily McIntosh (2021- present)
•	Shawn Carey (2022 - present) 
•	Guy Lipof (2023 - 2024)
•	Stuart Selby (2024 - present)
Looking Ahead: A Future #BTSM?
While the regularly scheduled chats have concluded, the #BTSM hashtag remains active as a continuing means for connection, resource sharing, and community engagement within the broader brain tumor social media ecosystem. We encourage ongoing use of the hashtag to amplify awareness, share knowledge, promote collaboration, and sustain the relationships #BTSM inspired. Though this marks the end of one era, it also represents an evolution—an opportunity for new forms of connection, advocacy, and dialogue to emerge.
We offer our heartfelt thanks to every individual who has contributed to the success of #BTSM since its inception. Together, we have created a legacy of patient empowerment, advocacy, and community. 
No…
182
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 01/10/2025
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
032
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 15/09/2025
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
npr.org
Running your lab results by ChatGPT? Here's what to keep in mind
While patients wait to hear back from their doctors about test results, many turn to AI assistants for answers. There are issues with privacy and accuracy.
021
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 25/08/2025
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
0143
Liz Salmi @thelizarmy.bsky.social · 25/08/2025
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...
1141
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 22/08/2025
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
beckershospitalreview.com
132 patient safety experts to know | 2025 - Becker's Hospital Review | Healthcare News & Analysis
The following patient safety experts are unwavering champions for patient harm reduction, disease management and disaster preparedness. Representing various roles across hospitals, health systems and ...
012
Liz Salmi @thelizarmy.bsky.social · 20/08/2025
Quite a few patient advocates know I’m a go-source for PDF copies of paywalls articles. #academicsky
media.tenor.com
a cartoon robin hood is standing in the woods with his arms outstretched .
ALT: a cartoon robin hood is standing in the woods with his arms outstretched .
2172
Reposted by Liz Salmi
Jared Rubenstein, MD @drjrubenstein.bsky.social · 08/08/2025
Thanks so much @clarefuller.bsky.social Loved partnering with my amazing friend @thelizarmy.bsky.social on this one. Excited for our chat!
023
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 23/07/2025
@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...
swaay.health
What If Patients See Their Notes First? | Swaay.Health
Clinicians write thousands of notes. For years, patients rarely saw them. But in the U.S. it's now the law that patients can access their clinical notes. So what happens when they do? Turns out, they’...
031
Reposted by Liz Salmi
Sam Goldstein @samschuelstein.bsky.social · 14/07/2025
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
media.tenor.com
a man in a suit and tie is making a funny face in front of a window .
Alt: Michael Scott looking moved and touched.
1452
Liz Salmi @thelizarmy.bsky.social · 15/07/2025
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
0160
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 26/06/2025
“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
uchealth.org
Can AI translations of medical test results reduce confusion and anxiety for patients?
Can AI translations of radiology reports reduce patient confusion and anxiety? Two studies explore how AI helps decode complex test results.
032
Reposted by Liz Salmi
Stuart Selby @stuartselby.bsky.social · 24/06/2025
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
241
Liz Salmi @thelizarmy.bsky.social · 16/06/2025
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
Mark Rothko begrudgingly allows me to show him off to the Internet.Mark Rothko reviews a recent article in Health Affairs.
081
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 29/05/2025
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
051
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 28/05/2025
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
074
Reposted by Liz Salmi
Dr.rer.pol. Sabine Schwab @sabine-nj.bsky.social · 19/05/2025
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.
051
Reposted by Liz Salmi
Brain Tumor Social Media Chat @btsmchat.bsky.social · 19/05/2025
#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)
131
Liz Salmi @thelizarmy.bsky.social · 08/05/2025
Maybe the real impact factor is the friends we made along the way. #academicsky
1150
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 30/04/2025
🚨 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
coalitionccc.org
2025 AI MiniConference Schedule
011
Liz Salmi @thelizarmy.bsky.social · 25/04/2025
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.”
260
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 23/04/2025
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
bmj.com
Robert F Kennedy Jr’s proposal to remove public commentary from US health policy is a threat to science and public health
With confidence and trust in science and public health already under pressure, we must double down on transparency and public participation in policy decisions, write Liz Salmi and colleagues Since ...
022
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 21/04/2025
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
044
Reposted by Liz Salmi
Susannah Fox @susannahrfox.bsky.social · 10/04/2025
Here's an advance directive I hadn't thought about before @taylorcoffman.bsky.social wrote this: taylorcoffman.substack.com/p/illness-an...
taylorcoffman.substack.com
How to create social media guidelines before emergencies occur
A cautionary tale for families and loved ones.
233
Reposted by Liz Salmi
Dana M. Lewis @danamlewis.bsky.social · 10/04/2025
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!)
bit.ly
A proof-of-concept study for patient use of open notes with large language models
AbstractObjectives. The use of large language models (LLMs) is growing for both clinicians and patients. While researchers and clinicians have explored LLM
153
Liz Salmi @thelizarmy.bsky.social · 08/04/2025
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: 😳
150
Reposted by Liz Salmi
Sue Woods @suewoods.bsky.social · 06/04/2025
👇🏽authoritariansim Via @bmj.com by @thelizarmy.bsky.social
bmj.com
Robert F Kennedy Jr’s proposal to remove public commentary from US health policy is a threat to science and public health
With confidence and trust in science and public health already under pressure, we must double down on transparency and public participation in policy decisions, write Liz Salmi and colleagues Since ...
022
Reposted by Liz Salmi
Pat Rich @pathealth.bsky.social · 06/04/2025
“We must not abandon public comment” by @thelizarmy.bsky.social et al. In @bmj.com www.bmj.com/content/389/...
bmj.com
Robert F Kennedy Jr’s proposal to remove public commentary from US health policy is a threat to science and public health
With confidence and trust in science and public health already under pressure, we must double down on transparency and public participation in policy decisions, write Liz Salmi and colleagues Since ...
045
Reposted by Liz Salmi
Janice McCallum @janicemc.bsky.social · 06/04/2025
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.
022
Reposted by Liz Salmi
Angie Rasmussen @angierasmussen.bsky.social · 06/04/2025
“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/...
bmj.com
Robert F Kennedy Jr’s proposal to remove public commentary from US health policy is a threat to science and public health
With confidence and trust in science and public health already under pressure, we must double down on transparency and public participation in policy decisions, write Liz Salmi and colleagues Since ...
416353
Reposted by Liz Salmi
Maureen Barr @barrlab.bsky.social · 04/04/2025
A friend at NIH received notice that the National Library of Medicine is terminating its bioinformatics program
710867
Reposted by Liz Salmi
Scott McGrath @smcgrath.phd · 05/04/2025
Tagging for 🧪 🩺 🛟
0189
Liz Salmi @thelizarmy.bsky.social · 05/04/2025
Gotta threaten my mom with no phone calls until she reads my papers these days. #academicsky #rfk www.bmj.com/content/389/...
bmj.com
Robert F Kennedy Jr’s proposal to remove public commentary from US health policy is a threat to science and public health
With confidence and trust in science and public health already under pressure, we must double down on transparency and public participation in policy decisions, write Liz Salmi and colleagues Since ...
1173
Liz Salmi @thelizarmy.bsky.social · 01/04/2025
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...
opennotes.org
Retro Notes: OpenNotes Brings Back Handwritten Medical Notes—Via Carrier Pigeon - Open Notes
OpenNotes is proud to announce its newest initiative: Retro Notes—a revolutionary program delivering medical records to patients the old-fashioned way: meticulously handwritten in calligraphy and flow...
160
Reposted by Liz Salmi
Brain Tumor Social Media Chat @btsmchat.bsky.social · 29/03/2025
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
3165
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 26/03/2025
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
us02web.zoom.us
Welcome! You are invited to join a meeting: Shared Access to Adult Patient Portals: A Vital Tool for Care Partners. After registering, you will receive a confirmation email about joining the meeting.
Join IPFCC for our next Informal Conversation, Shared Access to Adult Patient Portals: A Vital Tool for Care Partners. Many adult patients have care partners who assist them in managing their care. On...
175
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 19/03/2025
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
medpagetoday.com
Opinion | DIY Healthcare Can Help Counter the Physician Shortage
Improving patient education and health literacy can prompt a shift toward self-management
223
Reposted by Liz Salmi
Brain Tumor Social Media Chat @btsmchat.bsky.social · 06/03/2025
⚠️ 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
1238
Reposted by Liz Salmi
Fumiko Ladd Chino, MD FASCO @fumikochino.bsky.social · 15/03/2025
When two friends separately send you photos of each other's talk. @cdfuller.bsky.social @thelizarmy.bsky.social
272
Reposted by Liz Salmi
Open Notes Labs @handle.invalid · 13/03/2025
"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
youtube.com
Quality Talks 2018: Liz Salmi
YouTube video by NCQA - National Committee for Quality Assurance
031