Be One. Do one. Teach One.
Hi, my name is Liz. I am a curious person, turned citizen informaticist, known for turning my brain tumor diagnosis into an open source chronicle of the patient experience.
The rest of this bio was written in third-person. Weird, right?
Liz Salmi
OpenNotes, Beth Israel Deaconess Medical Center
Boston, MA
by way of Sacramento, CA
Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston, MA.
In this role, Liz aims to better understand the changing nature of patient-clinician communication in an age of increasing health information transparency.
She does this by working alongside clinicians, hospitals, health systems, and researchers in partnership with patients and care partners.
Liz is carving a novel path for non-traditional, patient investigators, and those who want to work with them.
Over the last 16 years, Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects.
After being diagnosed with a malignant brain tumor at age 29, Liz immediately put her digital communications skills to use by blogging, chronicling her daily symptoms, and seeing how much she could learn from her online patient portal.
Today her work focuses on involving patients and care partners in the co-design of research and research dissemination.
Liz’s primary research areas of interest include:
The effects of transparency on patient-clinician communication
stakeholder engagement
research dissemination
the role of social media in patient-clinician-researcher collaborations
Highlights
Mentorship
As a patient advocate, non-traditional researcher, and now educator, Liz is supported by mentors. She is formally mentored by:
Catherine M. DesRoches, DrPH
Director, OpenNotes, Associate Professor of Medicine, Harvard Medical School, Beth Israel Deaconess Medical CenterTom Delbanco, MD, Co-Founder, OpenNotes, John F. Keane & Family Professor of Medicine, Harvard Medical School, Beth Israel Deaconess Medical Center
In 2021, Liz and (her way more established) colleagues were awarded a $12.8 million Center Grant from the National Cancer Institute to determine optimal methods for patient enrollment in a cancer registry—designed in partnership with patients.*
In 2017, Liz received an Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) to support a stakeholder engagement project on brain cancer and palliative care. Of the 50 projects funded through the same program that year, Liz was the only individual and patient to be funded.*
Thanks in no small part to the support and mentorship of close collaborator, Bethany Kwan, PhD, MSPH.
It is rumored Liz was the drummer in a punk rock band.
Liz’s current projects
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OpenNotes Lab
Emerging information technologies in clinical documentation and patient-clinician communication offer exciting opportunities. They also present significant challenges. Ensuring these tools work well for patients and clinicians is critical.
Liz is part the founding team for the OpenNotes Lab, which is establishing an environment to test new initiatives in partnership with clinicians, patients and developers, and help design, evaluate, and guide innovations in clinical documentation, medical records, and patient engagement.
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OpenNotes
As part of OpenNotes, Liz contributes to education, research prioritization and design, and to dissemination and communication on transparency in patient-clinician communication through medical records (“open notes“). In the four years leading up to the 21st Century Cures Act “Information Blocking” Rule mandate of open notes, Liz delivered more than 70 talks, presentations, and workshops on the concept of open progress notes across the U.S. and overseas.
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OPTIMUM & the Low Grade Glioma Registry
Liz is a co-investigator for Optimizing Engagement in Discovery of Molecular Evolution of Low Grade Glioma (OPTIMUM). In OPTIMUM, patients and care partners are co-designing a research process where they make tweaks to a study over time (this is referred to as an “iterative process”). As partners, patients and researchers are testing ideas to improve brain tumor registry recruitment—such as how test results will be returned to research participants, and if the sharing of test results with those enrolled in the study will change the way patients feel about their involvement in research. (NIH Project Number: 1U2CCA252979-01A1)
Street Cred
Liz received the 2018 “Doc Tom Award” for e-Patient Principles from the Society for Participatory Medicine. She is a Stanford Medicine X e-Patient Scholar, a TEDMED Frontline Scholar, and was a member of the American Medical Informatics Association—but refuses renew her membership until the organization creates a discounted membership category for patient informaticians. She served on the volunteer board of directors for National Brain Tumor Society from 2017-2023.
