Well past the prognosis.

Still distrupting.

Eighteen years since brain cancer diagnosis. Fifteen years working in healthcare. Nine years in health services research. I brought the punk rock to health care. Now I'm a student studying Cognitive Science.

Note: I’m making adjustments to my personal blog this summer. Some content may have temporarily disappeared.

Hi, I’m Liz Salmi.

I believe in making research more accessible and understandable for everyone. I’m a patient advocate turned academic, driven by my lived experience with brain cancer and my work in the OpenNotes Lab.

I translate complex research into plain language, bridging the gap between patients, healthcare professionals, and academics. And now I am going back to school.

What's my deal?

What does awake brain surgery feel like?

“During an awake craniotomy for resecting part of her astrocytoma, a patient-investigator faces a high-stakes decision that she will make in collaboration with her neurosurgeon.”

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Featured Publications

  • 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.

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  • 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.

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  • 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

  • Adaptive driving after brain surgery: The hidden costs of neurological disability

    Neuro-Oncology Practice, 2026

    Why brain tumor survivors can be medically cleared to drive but priced out of actually driving

    After four brain surgeries left me unable to coordinate my feet on the pedals, I spent 14 months and $10,800 out of pocket to reclaim my independence through adaptive driving. This first-person perspective exposes a massive gap where insurance abandons patients the moment we leave the clinic.

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