Developing Partnerships to Advance Precision Medicine with AI/AN Tribal Nations

与 AI/AN 部落国家发展伙伴关系以推进精准医疗

• 批准号: 10831184
• 负责人: Teshia G. Arambula Solomon
• 金额: $ 30万
• 依托单位: UNIVERSITY OF ARIZONA
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-01 至 2028-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10831184
• 关键词: Acceleration; Adopted; Agreement; Alaska Native; All of Us Research Program; American Indians; Biomedical Research; Cardiovascular Diseases; Clinical Trials; Collaborations; Communities; Consultations; Custom; Diabetes Mellitus; Economic Development; Failure; Federal Government; Feedback; Geography; Goals; Government; Health; Indigenous; Laws; Left; Longitudinal Studies; Malignant Neoplasms; Medical; Mental Health; Mission; Participant; Pilot Projects; Population; Population Sizes; Process; Readiness; Research; Research Infrastructure; Resources; Rural; Science; Strategic Planning; Structure; Suicide; Surveys; Tribal Council; Tribes; Trust; United States; United States National Institutes of Health; Urban Community; Work; anticancer research; cohort; disparities in morbidity; experience; genetic testing; health equity; information gathering; interest; member; mortality; physical conditioning; pilot test; precision medicine; prevent; programs; racial population; research study; scale up; success; tool; tribal Nation; tribal community; tribal health; tribal leader; urban Native American; Acceleration; Adopted; Agreement; Alaska Native; All of Us Research Program; American Indians; Biomedical Research; Cardiovascular Diseases; Clinical Trials; Collaborations; Communities; Consultations; Custom; Diabetes Mellitus; Economic Development; Failure; Federal Government; Feedback; Geography; Goals; Government; Health; Indigenous; Laws; Left; Longitudinal Studies; Malignant Neoplasms; Medical; Mental Health; Mission; Participant; Pilot Projects; Population; Population Sizes; Process; Readiness; Research; Research Infrastructure; Resources; Rural; Science; Strategic Planning; Structure; Suicide; Surveys; Tribal Council; Tribes; Trust; United States; United States National Institutes of Health; Urban Community; Work; anticancer research; cohort; disparities in morbidity; experience; genetic testing; health equity; information gathering; interest; member; mortality; physical conditioning; pilot test; precision medicine; prevent; programs; racial population; research study; scale up; success; tool; tribal Nation; tribal community; tribal health; tribal leader; urban Native American

ABSTRACT American Indians and Alaska Natives (AIAN) are less likely to participate in longitudinal studies, in clinical trials, and in genetic testing and are a hard-to-reach population due to small overall population size and a general mistrust of science, research, and the Federal government. To meet their inclusion goals, the All of Us program (AOU) must continue to build trust with Tribal Nations. Our proposed project is developed specifically to build trust through strategies that honor key values identified by community members and Tribal leaders. One of the commitments NIH/AOU made following the Tribal consultation process is to “first engage with tribal communities through smaller pilot projects with Tribal Nations and urban and rural tribal communities and will use the information gathered to evaluate the successes and failures before scaling up any collaborations with tribes.” To help AOU meet this promise the community readiness assessment (CRA) will identify nations that are interested in pilot projects and which need greater support in capacity building to do so. A community readiness survey will be developed and pilot tested. We will work with Tribal/Community Advisors to develop and implement the survey(s), and tools and guidance in supporting capacity building efforts for Tribes/communities at lower levels of readiness. We aim to: • Establish an Advisory Council of Tribal and urban AIAN community leaders to develop and implement a Community Readiness Assessment (CRA) survey; • Provide feedback to support Tribal partners and the AOU research program to prioritize appropriate strategies for building partnerships; • Document best practices in building such partnerships; • In collaboration with the AOU Tribal Engagement Office, develop a strategic plan for long-term Tribal engagement for the program; and • Present the products/materials to the NIH Tribal Advisory Council for endorsement.

抽象的 美洲印第安人和阿拉斯加原住民（Aian）不太可能参加纵向 研究，在临床试验和基因检测中，由于较小而是难以到达的人群 总体人口规模和科学，研究和联邦政府的一般错误。 为了满足他们的包容性目标，我们所有的计划（aou）必须继续建立信任 部落国家。我们提出的项目是专门为通过策略建立信任而开发的 这种荣誉由社区成员和部落领导人确定的关键价值观。 NIH/AOU在部落咨询过程之后做出的承诺之一是“首先 通过与部落国家和城市的小型试点项目与部落社区互动 和粗糙的部落社区，并将使用收集的信息来评估成功和 在扩大与部落的任何合作之前，失败。” 为了帮助兑现这一诺言，社区准备评估（CRA）将确定 对飞行员项目感兴趣并且需要在能力建设中提供更大支持的国家 这样做。将开发和试点测试社区准备调查。我们将与 部落/社区顾问开发和实施调查，以及工具和指导 支持较低准备水平的部落/社区的能力建设工作。我们的目标 到： •建立一个部落和城市AIAN社区领导人的咨询委员会发展 并实施社区准备评估（CRA）调查； •提供反馈以支持部落合作伙伴和AOU研究计划以优先考虑 建立合作伙伴关系的适当策略； •记录建立此类伙伴关系的最佳实践； •与AOU部落参与办公室合作，制定战略计划 该计划的长期部落参与；和 •向NIH部落认可委员会介绍产品/材料。