EHR-based Genomic Discovery and Implementation (Bioethics Supplement)

Mayo Clinic Rochester, Rochester MN

Investigators

Linked publications, trials & patents

Abstract

In order to maximize the potential benefits of genomic medicine for all, it is crucial to support the delivery of genomic medicine in under-studied healthcare settings that serve underrepresented populations. Federally Qualified Health Centers (FQHCs) provide primary and preventive care to low-income patients in medically underserved communities. Patients who receive care in FQHCs face various barriers related to the social determinants of health such as inadequate health insurance coverage, poor access to sub-specialists and advanced diagnostics, and low health literacy. Healthcare providers working within FQHCs can help bridge the gap so that advances in genomic medicine reach underserved communities. It remains very uncommon for genomic medicine services to be offered in FQHCs, despite their potential value to the prevention and management of chronic diseases that disproportionately impact low-income communities. As a result, there is a heightened need to capture and conceptualize nuanced, in-depth accounts of healthcare providers’ experiences serving patients in an FQHC, particularly given that the US healthcare system and workforce are diverse. This project will leverage the infrastructure of the NIH/NHGRI eMERGE IV Network and the parent eMERGE IV grant to address this gap in promoting health equity in genomic medicine. We propose two aims, one in bioethics research and one in capacity building in bioethics research. The research aim is to characterize healthcare provider experiences caring for low-income patients receiving polygenic risk scores (PRS) in a FQHC in Phoenix, Arizona as part of eMERGE IV. We will focus on the setting, social determinants, and normative factors that influence how healthcare providers integrate genomic medicine into patient care. This project utilizes a qualitative, cross-sectional case study of Mountain Park Health Center (MPHC) located in Phoenix, Arizona, a large FQHC serving low-income minority patients across Phoenix, Arizona. This study team will conduct semi-structured in-depth interviews with between 15 and 20 healthcare providers working within MPHC that deliver PRS to patients enrolled in eMERGE IV. Interviews will focus on normative and contextual factors that impact how healthcare providers experience delivering genomic medical care in the FQHC setting. The capacity building aim will disseminate our findings with FQHC leaders across the state through the Arizona Alliance for Community Health Centers in order to generate a conversation on building capacity for healthcare providers to integrate genomic medicine within under-resourced healthcare settings. This project aims to advance our understanding of healthcare providers’ experiences as they deliver PRS to underrepresented populations in an under-resourced healthcare setting, and to disseminate these findings to stakeholders locally, nationally, and globally. This work is anticipated to inform future genomic medicine research in FQHCs and other under-resourced healthcare settings while highlighting the value of bioethics research to improve the translation and implementation of genomic medical care to vulnerable populations.