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ELSIconversations 1: ELSIcon2020

Part 4. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges


Sara J. Knight, PhD - University of Utah

ELSIconversations - April 16, 2021

The U.S. Department of Health and Human Services broadly defines access to care as: (1) entry to the health care system (usually through insurance coverage); (2) geographic accessibility to health care services; and (3) finding a trusted provider. Yet, this definition has not been consistently operationalized across diverse clinical settings, patient populations, and geographic contexts. This lack of consistency, coupled with the fragmented approach in the U.S. to health care finance and delivery, make this a particularly challenging and important area of research. The Clinical Sequencing Evidence-Generating Research (CSER2) Consortium, comprised of 6 clinical research projects with an overall research goal of broadening the evidence base for genomic medicine, is enrolling racial and ethnic populations that are underrepresented in research and individuals residing in medically underserved areas. This panel will present our experiences with defining and assessing access to care in CSER2. The moderator will describe how the CSER2 consortium developed measures to be administered at all sites to assess access to care. The panelists will present case studies from 3 of the sites, including Baylor College of Medicine’s Texas KidsCanSeq Study, the University of California San Francisco’s P3EGS Study, and the HudsonAlpha Institute for Biotechnology’s SouthSeq Study. Case studies will highlight common and distinctive challenges across the sites, and how variations in geographic, demographic, social, and clinical contexts shaped approaches to studying healthcare access. We will illustrate the challenges that should be anticipated and describe lessons learned when assessing access to care in genomic research and medicine.


precision medicine research
Ethics of precision medicine

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