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.

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