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: 10477382
• 负责人: Maya Sabatello
• 金额: $ 79.34万
• 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/10477382
• 关键词: Adult; Affect; African American; African American population; Alaska Native; American Indians; American Sign Language; Asian Pacific Islander; Attention; Black race; Clinic; Collaborations; Communities; Competence; Data; Data Collection; Development; Disabled Persons; Educational workshop; English Language; Ensure; Ethics; Ethnic Origin; Ethnic group; Focus Groups; Genetic; Genomics; Goals; Guidelines; Health; Individual; Institution; Interdisciplinary Study; Journals; Knowledge; Latino; Latino Population; Measures; Methods; Minority Participation; Modeling; Not Hispanic or Latino; Outcome; Participant; Pathway interactions; Peer Review; Perception; Persons; Population; Prevalence; Procedures; Process; Professional Organizations; Publications; Race; Recommendation; Reporting; Research; Research Personnel; Sampling; Social Justice; Societies; Source; Spanish Americans; Subgroup; Surveys; Trust; Vision Disorders; Visual; Work; base; cohort; community based participatory research; comparative; concept mapping; design; disability; distrust; ethnic diversity; ethnic identity; ethnic minority; evidence base; evidence based guidelines; experience; health disparity; health equity; hearing impairment; individualized medicine; insight; interest; marginalized population; meetings; member; precision medicine; racial and ethnic; racial minority; recruit; social exclusion; symposium; theories; translational genomics; trustworthiness; webinar

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.

残疾人估计是美国人口的22％和美国最大的健康差异群体 将它们包括在精密医学研究（PMR）中对于获得量身定制的科学发现至关重要 卫生公平并维护残疾人的平等。种族/族裔少数民族的研究表明 对PMR阻碍这些目标的不信任。研究还发现，社区成员的不和谐 研究人员对信任组成部分的看法可能会对研究合作产生负面影响。有人 残疾可能与其他边缘化群体具有相似和独特的（DIS）信任的相似和独特的问题， 特别是来自种族/族裔少数民族的人。但是，迄今为止还没有研究探索（DIS）信任的来源 在残疾人中的PMR中，或者他们对PMR的可信度的看法，这是一个先决条件 建筑物信任。残疾人和研究人员也可能会查看信任和 可信赖的方式有所不同，但是没有研究检查这个问题。这项研究的目的是1）确定 在具有行动能力，远见和听力的人中，PMR的不信任和障碍（MVH） 跨种族/族裔群体的残疾（美国最常见的残疾）； 2）比较人的观点 与MVH残疾，种族/族裔群体以及转化基因组（TG）研究人员的领导者 PMR，关于PMR的信任和可信度； 3）制定基于证据的建议 在残疾人中信任PMR。为了实现这些目标，我们将采用概念映射 使用混合方法设计的步骤过程。我们将进行1）30个焦点小组，以残疾类型分层 种族/民族（黑人/非裔美国人，拉丁美洲人，美洲印第安人/阿拉斯加人，亚洲/太平洋岛民，非 - 西班牙裔白人）探索不信任的根源，并确定影响对信任的看法的因素 PMR; 2）在线，有4,500人MVH残疾人的国家调查，过度采样种族/族裔少数民族， 和250位TG研究人员，用于检查（DIS）对PMR的（DIS）信任的域并获得比较 关于影响PMR可信度的因素的见解。根据我们的发现，我们将进行迭代 通过与两个利益相关者群体的参与来起草，修改和最终确定建议的过程。 这些过程将允许开发（DIS）对PMR的（DIS）信任和可操作的概念模型 可增强残疾人中PMR可信度的路线图。该研究采用残疾 基于社区的参与研究方法。它由一个跨学科研究团队领导，包括 具有残疾经验的研究人员和专家与国家组织 残疾人。研究材料，数据收集和发现将是可残疾的，可用的 用简单的语言英语，西班牙语和美国手语。我们将在专业人士 会议和在同行评审期刊的出版物中，并通过发布摘要来与参与者分享结果， 举行残疾会议，并与我们的社区合作伙伴举行网络研讨会。