Liz Salmi

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.

@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:

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

My First 72 Hours With OpenAI’s New Health GPT: Early Impressions — The Liz Army: Bringing punk rock to health care As someone who has spent nearly two decades experimenting with digital health tools—personal health records, tethered portals, wearables, symptom trackers, oncology apps, research dashboards—I was exc...

🚨 And please remember: I chose to sync my data because most of it’s already been public for years. Think very carefully before sharing sensitive health info with any AI.
www.thelizarmy.com/blog/my-firs...

Liz Salmi holding a guest badge with information redacted in San Francisco.

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...

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

I miss you, @rasushrestha.bsky.social ! 👋

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.

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.

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...

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.

And this great article in @statnews.com:
"An advocate who offered a window on the experience of living with brain cancer dies at 43"
www.statnews.com/2025/12/22/a...

Adam Hayden and Liz Salmi at Stanford.

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

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…

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

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.

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...

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 ...

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

Unrelated to this paper... I was sorting J@amia.org Open for the Perspectives and it was a long scroll of your work. Every other result. I was like, DAMN GIRL.

*go-to source

Wow, I really fired that one off with no regard to typos 😆

*paywalled

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 .

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!

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’...

@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...

a man in a suit and tie is making a funny face in front of a window . Alt: Michael Scott looking moved and touched.

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

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.

“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

Aww, thanks, friend! I appreciate @theabta.bsky.social for the opportunity to share my journey across the space, and to try something new.

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

Mark Rothko begrudgingly allows me to show him off to the Internet.

Mark Rothko reviews a recent article in Health Affairs.

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