Community-engaged Research Toward Precision Medicine with AIAN People

与 AIAN 人一起开展社区参与的精准医学研究

• 批准号: 9754853
• 负责人: BERT Brandon BOYER
• 金额: $ 62.81万
• 依托单位: SOUTHCENTRAL FOUNDATION
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-07-01 至 2022-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9754853
• 关键词: Address; Alaska; Alaska Native; American Indians; Area; Collaborations; Communication; Communication Tools; Communities; Community Health; Complex; Conflict (Psychology); Consensus; Data; Data Collection; Development; Discrimination; Disease; Electronic Health Record; Environment; Environmental Risk Factor; Equilibrium; Ethics; Focus Groups; Foundations; Genes; Genotype; Goals; Health; Health Benefit; Health Personnel; Health Priorities; Healthcare; Individual; Intervention; Interview; Knowledge; Leadership; Life Style; Logistics; Measures; Medical; Minority; Montana; Native-Born; Ownership; Participant; Pathogenesis; Persons; Pharmacogenomics; Phenotype; Policies; Population Heterogeneity; Prevention; Prevention strategy; Privacy; Research; Research Personnel; Resource Sharing; Risk; Rural; Scientific Advances and Accomplishments; Site; Technology; Testing; United States National Institutes of Health; Universities; Work; biomarker discovery; data access; data sharing; data warehouse; design; disorder risk; flexibility; health care disparity; individual variation; insight; mHealth; meetings; member; novel; precision medicine; prevent; racial and ethnic; racial diversity; risk minimization; rural Alaska; treatment strategy; tribal community; tribal health; tribal leader; tribal organization; uptake; urban Native American; willingness

Project Summary/Abstract The overall goal of the proposed research is to advance policy approaches to support Precision Medicine research (PMR) with American Indian and Alaska Native (AIAN) people through culturally respectful dialogue, empiric data collection, and deliberation with rural and urban AIAN community members and tribal representatives in Alaska and Montana. We propose to address three complex and important challenges to conducting PMR within a successful community-academic partnership involving AIAN communities: (1) alignment of PMR with tribal health priorities; (2) return of PMR results to participants and communities; and (3) data stewardship. Understanding the importance of PM relative to other tribal health priorities, and how PM may benefit AIAN people, is an important first step in developing a clear understanding of the kinds of PMR that could be pursued and its potential value to AIAN communities. Identifying cultural, logistical, and environmental factors that must be considered is an essential first step because these factors influence the acceptability of PMR within AIAN communities, community members’ willingness to participate, and ultimately, the uptake and usefulness of results and interventions that emerge from PMR. Flexible, community-responsive approaches to the return of results from PMR need to be developed. AIAN community members want to be involved in defining best practices for returning research results that maximize benefit and minimize risk for AIAN people. Moreover, developing trustworthy approaches to data stewardship – who owns research information, whether it can be shared and with whom, and who decides – is required if PMR is to move forward in AIAN communities. The proposed research will identify principles and approaches that can provide the foundation for effective PMR in AIAN communities. In collaboration with our AIAN Community Advisory Groups, we will: (1) Conduct empiric data collection from stakeholders at each study site, to understand community views regarding PM and PMR participation; (2) Convene local dialogs with tribal leadership at each site to review Aim 1 findings and discuss tribal health priorities, return of research results, and data stewardship, in addition to holding cross-site deliberation among AIAN tribal leaders in Alaska and Montana to identify areas of common ground and disagreement on these issues; (3) Develop a comprehensive communication plan to chart key messages, audiences, and communication vehicles for each study site to share the results emerging from this work with a full range of stakeholders, including other tribal organizations, researchers working with tribal communities, and research funders; and (4) Convene a national meeting to identify areas of consensus and challenges to be overcome in implementing PMR in AIAN communities.

项目摘要/摘要 拟议研究的总体目标是推进支持精确医学的政策方法 通过文化尊重与美国印第安人和阿拉斯加原住民(AIAN)进行的研究(PMR) 与城乡AIAN社区成员和部落进行对话、经验数据收集和审议 阿拉斯加和蒙大拿州的代表。我们建议解决三个复杂而重要的挑战，以 在AIAN社区参与的成功的社区-学术合作伙伴关系中开展PMR：(1) 使PMR与部落卫生优先事项保持一致；(2)将PMR结果返回给参与者和社区；以及 (3)数据管家。 了解PM相对于其他部落健康优先事项的重要性，以及PM如何受益 AIAN人，是发展对PMR类型的清楚理解的重要的第一步， 及其对AIAN社区的潜在价值。确定文化、物流和环境 必须考虑的因素是必不可少的第一步，因为这些因素影响到 AIAN社区内的PMR，社区成员参与的意愿，以及最终的接受 以及PMR产生的结果和干预措施的有用性。 需要制定灵活的、社区响应的方法，以便从PMR返回结果。 AIAN社区成员希望参与定义返回研究结果的最佳实践， 最大限度地提高AIAN员工的利益，最大限度地降低风险。此外，开发可靠的数据处理方法 管理-谁拥有研究信息，是否可以与谁共享，以及谁决定- 如果PMR要在AIAN社区中向前推进，则需要。 拟议的研究将确定能够提供以下基础的原则和方法 AIAN社区有效的PMR。与我们的AIAN社区咨询小组合作，我们将： (1)在每个研究地点向利益相关者收集经验数据，以了解社区意见 关于PM和PMR的参与；(2)在每个地点召集与部落领导人的地方对话，以审查 目标1调查结果并讨论部落健康优先事项、研究结果的返回和数据管理 除了在阿拉斯加和蒙大拿州的AIAN部落首领之间举行跨现场审议，以确定 在这些问题上的共同点和分歧之处；(3)发展全面沟通 计划为每个研究站点绘制关键信息、受众和沟通工具，以共享结果 从这项工作中脱颖而出的利益相关者，包括其他部落组织，研究人员 与部落社区和研究资助者合作；以及(4)召开一次全国会议，以确定地区 关于在AIAN社区实施PMR方面的共识和需要克服的挑战。