Disability, diversity and trust in precision medicine research: stakeholdersengagement

精准医学研究中的残疾、多样性和信任：利益相关者参与

• 批准号: 10370875
• 负责人: Maya Sabatello
• 金额: $ 77.23万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-03-12 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10370875
• 关键词: Disability; diversity; trust; precision; medicine

People with disabilities are estimate at 22% of the population and the largest health disparity group in the U.S. Including them in Precision Medicine Research (PMR) is vital to attaining tailored scientific findings, assuring health equity and upholding the equality of people with disabilities. Studies of racial/ethnic minorities suggest that distrust of PMR thwarts fulfillment of these goals. Studies also found that discord in community members' and researchers' views about components of trust may negatively impact research collaboration. People with disabilities are likely to have both similar and unique issues of (dis)trust of PMR as other marginalized groups, especially those from racial/ethnic minorities. Yet, no study to date has explored the sources of (dis)trust in PMR among people with disabilities, nor their views about trustworthiness of PMR, a prerequisite for building trust. It is also likely that people with disabilities and researchers will view key issues in trust and trustworthiness differently, but no study has examined this issue. This study aims to 1) identify domains of distrust in and barriers to trustworthiness of PMR among people with mobility, vision and hearing (MVH) disabilities (most common disabilities in the U.S.), across racial/ethnic groups; 2) compare the views of people with MVH disabilities, across racial/ethnic groups, and translational genomic (TG) researchers, the leaders of PMR, about trust in and trustworthiness of PMR; and 3) develop evidence-based recommendations for building trust in PMR among people with disabilities. To achieve these aims, we will employ Concept Mapping, a multi- step process with mixed-methods design. We will conduct 1) 30 focus groups, stratified by disability-type and race/ethnicity (Black/African Americans, Latinos, American Indian/Alaska Natives, Asian/Pacific Islanders, non- Hispanic Whites) to explore sources of distrust and to identify factors affecting views on trustworthiness of PMR; 2) online, national surveys with 4,500 people with MVH disabilities, oversampling racial/ethnic minorities, and 250 TG researchers to examine systematically domains of (dis)trust in PMR and to gain comparative insight about factors affecting trustworthiness of PMR. Based on our findings, we will then conduct an iterative process to draft, revise and finalize recommendations through engagement with both stakeholder groups. These processes will allow development of a nuanced conceptual model of (dis)trust in PMR and an actionable roadmap for enhancing PMR trustworthiness among people with disability. The study employs a disability community-based participatory research approach. It is led by an interdisciplinary research team, including researchers and experts with lived experiences of disabilities and collaboration with national organizations of people with disabilities. Study material, data collection, and findings will be disability-accessible and available in plain language English, Spanish and American Sign Language. We will present our findings at professional meetings and in publications in peer-reviewed journals, and share results with participants by posting briefs, presenting at disability conferences, and holding webinars with our community partners.

残疾人估计占人口的22%，是美国健康差距最大的群体。 将他们纳入精准医学研究（PMR）对于获得量身定制的科学发现至关重要， 健康公平和维护残疾人平等。对种族/少数民族的研究表明， 对PMR的不信任阻碍了这些目标的实现。研究还发现，社区成员之间的不和谐 研究者对信任构成要素的看法可能会对研究合作产生负面影响。人 残疾人可能与其他边缘化群体一样，存在对PMR信任（不信任）的类似和独特问题， 特别是少数民族/种族的人。然而，迄今为止还没有研究探讨过信任（不信任）的来源 在残疾人的PMR，也不是他们对PMR的可信度的看法，一个先决条件， 建立信任残疾人和研究人员也可能会以信任的态度看待关键问题， 可信度不同，但没有研究探讨这个问题。本研究旨在：1）确定 行动、视力和听力（MVH）人群对PMR的不信任和信任障碍 残疾（美国最常见的残疾），跨种族/民族群体; 2）比较人们的观点 与MVH残疾，跨种族/民族群体，和翻译基因组（TG）的研究人员，领导人的 PMR，关于PMR的信任和可信度;以及3）制定基于证据的建议， 残疾人对PMR的信任。为了实现这些目标，我们将采用概念图，一个多- 混合方法设计分步工艺。我们将进行1）30个焦点小组，按残疾类型分层， 种族/民族（黑人/非裔美国人、拉丁美洲人、美洲印第安人/阿拉斯加原住民、亚洲人/太平洋岛民、非 西班牙裔白人），以探讨来源的不信任，并确定影响的因素，对可信度的看法， PMR; 2）对4，500名MVH残疾人进行在线全国调查，对少数种族/民族进行过度抽样， 和250名TG研究人员系统地检查PMR中的（不）信任领域，并获得比较 了解影响PMR可信度的因素。根据我们的发现，我们将进行迭代 通过与两个利益攸关方群体的接触起草、修订和最后确定建议的进程。 这些过程将允许开发PMR中（不）信任的细微概念模型和可操作的 提高残疾人对PMR的信任度的路线图。这项研究采用了残疾 以社区为基础的参与式研究方法。它由一个跨学科的研究团队领导，包括 有残疾人生活经历的研究人员和专家，并与国家残疾人组织合作， 残疾人士研究材料、数据收集和研究结果将是残疾人可访问和可获得的 英语、西班牙语和美国手语。我们将在专业的 会议和同行评审期刊上的出版物，并通过张贴简报与与会者分享成果， 在残疾人会议上发言，并与我们的社区合作伙伴举行网络研讨会。