Still punk rock.
New subject.

I’m Liz Salmi—a former punk rock drummer, turned patient advocate, turned research communicator. Now I’m headed to UC Davis to major in Cognitive Science and formalize my education.

For 19 years, I’ve written about my first-person experience living with a progressive neurological disease, patient advocacy, and research I’ve done in partnership with other people. Now I’ve returned to school to better understand the foundations of research and neuroscience within the context of medical humanities.

About me

My favorite publications

  • US Policy Requires Immediate Release of Records to Patients

    The BMJ, 2021

    A major shift in patient power, and hospitals need to get ready

    The 21st Century Cures Act gave U.S. patients free, immediate access to their complete health records online—a historic win for transparency after 25 years of advocacy. But the change came with real concerns, from learning bad news before talking to your doctor to data privacy risks, and hospitals must decide whether to embrace this shift or ignore it.

    Read

  • Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal

    JAMA Network Open, 2023

    Patients overwhelmingly want immediate access to test results… even abnormal ones

    A survey of 8,000+ patients at U.S. medical centers found that 96% prefer receiving test results instantly through online portals, even before their doctor has reviewed them. The findings challenge concerns about early disclosure causing harm, though some patients reported increased worry when results were abnormal.

    Read

  • Deciding on My Dimples

    New England Journal of Medicine, 2022

    During an awake craniotomy for resecting part of my brain tumor, I faced a high-stakes decision I needed to make in collaboration with my neurosurgeon

    “Later, awakening with bleary eyes in the neurological intensive care unit, I asked the nursing staff why my muscles were sore. I felt like I’d run a marathon.”

    Read

  • A Proof-of-Concept Study for Patient Use of Open Notes with Large Language Models

    JAMIA Open, 2025

    Can AI help patients understand their medical notes?

    Researchers tested whether ChatGPT, Claude, and Google Gemini could accurately explain clinical notes to patients using patient-written questions. ChatGPT with personalized prompts performed best, suggesting AI could become a powerful tool for helping patients understand their own health information.

    Read
View all of my publications

My patient advocate blog

Before school, I did patient advocacy and began my journey toward research. My blog was here for all of it.

The Liz Army Blog
Flashback: A play-by-play of my life in 2017
OpenNotes, National Brain Tumor Society, PCORI, Bethany Kwan, Cait DesRoches, Brett
Flashback: A play-by-play of my life in 2017
OpenNotes, National Brain Tumor Society, PCORI, Bethany Kwan, Cait DesRoches, Brett

As I transfer a terabyte of data from my OpenNotes (work) laptop to my new (school) laptop, I'm running across fragments of unpublished blog posts about my life between 2017 and 2026. Here's a post I never shared, outlining my whirlwind new life after I quit my job to join the full-time world of patient-partnered research.

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OpenNotes, National Brain Tumor Society, PCORI, Bethany Kwan, Cait DesRoches, Brett
The real publications are the friends we made along the way*
OpenNotes, patient advocacy
The real publications are the friends we made along the way*
OpenNotes, patient advocacy

After nine years of working at the intersection of patient advocacy and health services research, this is my last week with OpenNotes at Beth Israel Deaconess Medical Center. Over these nine years, my role transformed. When Cait DesRoches offered me a job, I had no idea it would be the longest job I’d ever had, or that it would lead to a vision of what I would do next.

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OpenNotes, patient advocacy
Adaptive Driving After Brain Surgery: The Hidden Costs of Neurological Disability
2026, driving, journal article
Adaptive Driving After Brain Surgery: The Hidden Costs of Neurological Disability
2026, driving, journal article

I have a status update on the driving-front! I wrote last fall about going back to school. What I didn't say explicitly then is that I couldn't have committed to that decision without knowing I could physically get there.

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2026, driving, journal article
STAT: “Why I decided to share all my health information with ChatGPT Health“
2026
STAT: “Why I decided to share all my health information with ChatGPT Health“
2026

I use every tool at my disposal to make sense of the messiness of living with brain cancer. I don’t recommend this approach for everyone. My hope is that models like ChatGPT Health can help regular people become more curious about their health, learn to ask informed questions, and feel more prepared for their medical visits.

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2026
My First 72 Hours With OpenAI’s New Health GPT: Early Impressions
2026
My First 72 Hours With OpenAI’s New Health GPT: Early Impressions
2026

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 excited to see what Health GPT could actually do for me.

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2026
Adam Hayden: “The best way through fear is familiarity”
2025
Adam Hayden: “The best way through fear is familiarity”
2025

If you are looking for an obituary, official words, or a journalistic remembrance, I’ll point you elsewhere. What you’re going to get from me instead is something different: a first-person account from a fellow brain cancer patient-advocate who had the privilege of walking alongside Adam Hayden for nearly nine years. Also, don’t expect me to write as eloquently as Adam did. Few people could.

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2025
I’m Going Back to School: A Three-Year, Self-Funded Research Sabbatical (Kind Of)
2025, school
I’m Going Back to School: A Three-Year, Self-Funded Research Sabbatical (Kind Of)
2025, school

After eight years in health research, I’m going back to school to finish my bachelor’s degree—and, who knows, work toward a PhD? For now, it’s a three-year, self-funded “research sabbatical” with big goals, tight budgets, and a lot of heart. I’m scared, excited, and ready. So why am I doing this now?

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2025, school
F-ck Cars: Finding Freedom from Brain Cancer on Two Wheels
2024
F-ck Cars: Finding Freedom from Brain Cancer on Two Wheels
2024

The bike? It’s my middle finger to the five-mile cage of restrictions I'm forced to live with. It’s the feeling of breaking out, of reclaiming space that’s been taken from me. Sure, a car can haul groceries within a five-mile radius, and I’ll appreciate it when the days get shorter and colder. But for now, it’s summer. I’m alive, my feet still pedal, and the wind on my face? It’s my anthem of survival. Fuck cars.

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2024
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