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.

项目总结/摘要 拟议研究的总体目标是推进支持精准医学的政策方法 研究（PMR）与美国印第安人和阿拉斯加原住民（AIAN）的人，通过文化上的尊重 与农村和城市AIAN社区成员和部落成员进行对话，收集经验数据，并进行审议。 阿拉斯加和蒙大拿州的代表。我们建议应对三个复杂而重要的挑战， 在涉及AIAN社区的成功社区-学术伙伴关系中开展PMR：（1） PMR与部落卫生优先事项的一致性;（2）将PMR结果返回给参与者和社区;以及 (3)数据管理 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的人，是一个重要的第一步，在发展一个明确的理解的种类PMR，可以 它的潜在价值及其对社区的影响。确定文化、后勤和环境 必须考虑的因素是重要的第一步，因为这些因素影响 AIAN社区内的PMR，社区成员的参与意愿，以及最终的吸收 以及PMR产生的结果和干预措施的有用性。 需要制定灵活的、对社区敏感的方法，以返回PMR的结果。 AIAN社区成员希望参与定义返回研究结果的最佳实践， 最大限度地提高效益，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，是否可以共享，与谁共享，以及谁决定- 如果PMR要在AIAN社区向前发展，就需要。 拟议的研究将确定原则和方法，为以下方面奠定基础： AIAN社区中有效的PMR。通过与我们的AIAN社区咨询小组合作，我们将： (1)从每个研究中心的利益相关者那里收集经验数据，以了解社区意见 关于PM和PMR的参与;（2）在每个地点与部落领导人召开当地对话， 目标1发现并讨论部落健康优先事项，研究结果的回报和数据管理， 除了在阿拉斯加和蒙大拿州的AIAN部落领导人之间举行跨地点审议， 在这些问题上的共同点和分歧领域;（3）发展全面的沟通 计划为每个研究点绘制关键信息、受众和交流工具图表，以分享研究结果 通过与包括其他部落组织、研究人员在内的各种利益攸关方的合作， 与部落社区和研究资助者合作;（4）召开全国会议， 在AIAN社区实施PMR的共识和挑战。