EHR-based Genomic Discovery and Implementation (Bioethics Supplement)

为了最大限度地发挥基因组药物对所有人的潜在好处，关键是支持 在研究不足的医疗保健环境中的基因组医学，服务于代表性不足的人群。联邦范围内 合格的卫生中心(FQHC)为低收入患者提供初级和预防性医疗保健 服务不足的社区。在FQHC接受护理的患者面临着与社会相关的各种障碍 健康的决定因素，如医疗保险覆盖范围不足、看不到专科医生和 先进的诊断技术和低健康素养。在FQHC内部工作的医疗保健提供者可以帮助弥合 差距，使基因组医学的进步惠及未得到充分服务的社区。它仍然是非常罕见的 将在FQHC提供的基因组医学服务，尽管它们对预防和治疗疾病具有潜在价值 管理对低收入社区影响不成比例的慢性病。因此，有 迫切需要收集和概念化医疗保健提供者细致入微的深入描述 在FQHC为患者提供服务的经验，特别是考虑到美国的医疗系统和劳动力 多种多样。该项目将利用NIH/NHGRI Emerge IV网络和母公司的基础设施 Emerge IV赠款，以解决在促进基因组医学健康公平方面的这一差距。我们提出了两个目标， 一个是生物伦理学研究，一个是生物伦理学研究能力建设。研究的目的是 描述医疗保健提供者照顾接受多基因风险评分的低收入患者的经历 (PR)作为Emerge IV的一部分，在亚利桑那州凤凰城的FQHC中。我们将专注于背景、社会决定因素、 以及影响医疗保健提供者如何将基因组医学整合到患者护理中的规范因素。 该项目利用了一个定性的、横断面的山野公园健康中心(MPHC)案例研究 在亚利桑那州凤凰城，一家大型FQHC为亚利桑那州凤凰城的低收入少数族裔患者提供服务。本研究 团队将对15至20名医疗保健提供者进行半结构化的深入访谈 在为参加Emerge IV的患者提供PR的MPHC内。访谈将集中在规范和 影响医疗保健提供者如何体验在 FQHC设置。能力建设目标将向全州的FQHC领导人传播我们的发现 通过亚利桑那州社区卫生中心联盟，以便就建设 医疗保健提供者在资源不足的医疗保健环境中整合基因组药物的能力。 该项目旨在促进我们对医疗保健提供者在将医疗服务提供给 在资源不足的医疗保健环境中代表不足的人群，并将这些调查结果传播到 地方、国家和全球的利益相关者。这项工作有望为未来的基因组医学提供信息。 在FQHC和其他资源不足的医疗保健环境中进行研究，同时强调生物伦理的价值 研究改善对弱势群体的基因组医疗服务的转化和实施。

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.