EP6 | Open Notes, Brain Cancer & Patient Advocacy - Interview with Liz Salmi
Our Guest
Liz Salmi is the Communications & Patient Initiatives Director at OpenNotes, where she helps clinicians, hospitals, and health systems better understand care through the patient’s eyes in an era of increasing transparency. A nationally recognized patient-researcher and advocate, Liz’s work focuses on patient-clinician communication, stakeholder engagement, research dissemination, and the role of social media in patient-centered research collaborations. Living with a low-grade malignant brain tumor, she brings nearly two decades of lived experience as a research participant, advisor, investigator, and leader in patient engagement initiatives. In addition to her work at OpenNotes, Liz led the Brain Cancer Quality of Life Collaborative and was part of a team awarded a $12.8 million National Cancer Institute Center Grant to advance brain tumor research and patient enrollment. She has been widely recognized for pioneering opportunities for non-traditional researchers and for advancing meaningful patient involvement in clinical research.
Recorded Oct 14, 2022
We sit down with Liz Salmi, Communications & Patient Initiatives Director at OpenNotes and a pioneering patient-researcher living with a low-grade malignant brain tumor. Liz brings a rare and powerful perspective shaped by nearly two decades navigating healthcare as both a patient and a leader in patient engagement, transparency, and advocacy. We explore the promise and pitfalls of open clinical notes, how patients and families can better interpret and use the electronic medical record, and what it truly means to be empowered in modern healthcare. Liz shares her personal journey with brain cancer, her work advancing quality of life research for people with malignant brain tumors, and her insights into end-of-life care, hospice, and the values that matter most when facing serious illness.
Listen to full episode :
Show Notes
04:15 – History of Liz’ brain tumor
10:20 – How can patients and families mitigate the risks of interpreting open notes?
15:58 – How can people be empowered to be better advocates for themselves using the electronic medical record?
23:09 – Working for a labor union and dedicating life to healthcare advocacy
28:03 – What’s your experience dealing with a life-threatening brain tumor and how did it affect you as a person?
32:09 – Discussing what’s most important to people in hospice, and teachings from “The Five Invitations” by Frank Ostaseski
37:24 – Where do you see medical bullshit and how would you define it?
39:05 – What do you see as the cure for medical bullshit?
Mentioned Links and Resources
Learn about OpenNotes: https://www.opennotes.org/
"The Five Invitations: Discovering What Death Can Teach Us About Living Fully" by Frank Ostaseski: https://www.amazon.com/Five-Invitations-Discovering-Death-Living/dp/1250074657
Theme Music (song provided by Timothy Ott and the Daily Afflictions)
Check out our theme song "Prescription Kills" and more music by The Daily Afflictions on Spotify!