MCL GRAND ROUNDS - 11:30AM PT
Stories That Travel: An Introduction to the HER Network
Precision medicine has led to significant scientific advances, yet access remains highly uneven. The benefits are often influenced more by a patient's personal factors, insurance coverage, and treatment location than by medical need.
How can we reduce these barriers and improve access for patients who stand to gain the most from these innovations?
The Health Experiences Research Network (HERN) considers patient and family experiences as primary evidence.
HERN collects narratives using a rigorous qualitative approach and shares findings not only through traditional academic channels but also by making these stories accessible to patients, families, clinicians-in-training, researchers, and policymakers. Additionally, HERN facilitates international comparisons of how these experiences differ.
In this talk, Dr. Mrig will introduce HERN and the HEXI methodology through two examples from her precision medicine research: a co-led primary study with patients and families affected by undiagnosed diseases, and her recent work examining how individuals at risk for hereditary conditions access genetic testing and follow-up care. She'll conclude by discussing next steps in this research and potential opportunities for future MCL/UCSF collaborations..
Emily Mrig
Emily Hammad Mrig, PhD, MA, is an Assistant Professor in the Department of Clinical Pharmacy and the Center for Translational and Policy Research on Precision Medicine (TRANSPERS) at UCSF.
An interdisciplinary social scientist trained in health and behavioral science (PhD), anthropology (MA), and health policy (postdoc at Yale), she examines how insurance, institutional structures, and policy shape access to precision medicine across a range of health contexts, including cancer, rare and undiagnosed diseases, and neurodegenerative and Alzheimer’s diseases. She is a mixed-methods researcher whose approaches integrate qualitative narrative methods with health services research to bring patient and family experiences into policy conversations. She is an active member of the U.S. Health Experiences Research Network (HERN) and the international DIPEx/HEXI consortium.