Communications & Patient Initiatives Director
Liz Salmi is the Communications & Patient Initiatives Director for OpenNotes. In this role, Liz helps clinicians, hospitals and health systems understand through “the patient’s eyes” the changing nature of patient-clinician communication in an age of growing transparency. Her research areas of interest include: the effects of transparency on patient-clinician communication, stakeholder engagement, research dissemination, and the role of social media in patient-clinician-researcher collaborations.
As a person living with a low grade malignant brain tumor, Liz is passionate about helping all people engage in their own health care by improving their experience as patients. Over the last 15 years she 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.
In addition to her work with OpenNotes, Liz leads the Brain Cancer Quality of Life Collaborative, a multi-stakeholder group dedicated to advancing science and improving the quality of life for people with malignant brain tumors. The group was established in 2017 with funding from PCORI, with a mission to meaningfully engage diverse stakeholders (including patients and care partners) in the prioritization, design, and conduct of research. In fall 2021, members of the BCQoLC team (along with established investigators), were awarded a $12.8 million Center Grant from the National Cancer Institute to determine optimal methods for patient enrollment in a brain tumor registry. NCI reviewers remarked that the inclusion of patient investigators in the proposal was “innovative.”
Liz is carving a novel path for non-traditional/patient-researchers and those who want to work with them in academe. She is among a few individuals to have received a PCORI award without institutional support as a “patient PI.” She was commissioned to publish the first “Step-By-Step Guide to Peer Review,” by BMJ Health & Care Informatics, a template to be used by patients and other novice peer reviewers.
Liz was named e-Patient of the Year by the Society for Participatory Medicine. She is a member of the American Medical Informatics Association (AMIA), a Stanford Medicine X e-Patient Scholar, a TEDMED Frontline Scholar, and serves on the National Brain Tumor Society board of directors. Her interests include clinical informatics, citizen science, and human-centered design.