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

基本信息

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
项目类别：
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

项目摘要

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.

项目概要/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通过文化尊重与美洲印第安人和阿拉斯加原住民 (AIAN) 进行研究 (PMR) 与农村和城市 AIAN 社区成员和部落进行对话、经验数据收集和审议我们建议解决阿拉斯加和蒙大拿州的三个复杂而重要的挑战。涉及 AIAN 社区的成功社区学术伙伴关系中的 PMR：(1) 将 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； (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 人是清楚了解 PMR 类型的重要的第一步，确定文化、后勤和环境的潜在价值。必须考虑的因素是至关重要的第一步，因为这些因素会影响可接受性 AIAN 社区内的 PMR、社区成员的参与意愿以及最终的采用率 PMR 产生的结果和干预措施的有用性。需要制定灵活的、社区响应的方法来返回 PMR 结果。 AIAN 社区成员希望参与定义返回研究结果的最佳实践，为 AIAN 人员实现利益最大化和风险最小化此外，开发值得信赖的数据方法。管理权——谁拥有研究信息，是否可以共享，与谁共享，以及由谁决定—— 如果 PMR 要在 AIAN 社区中向前发展，则需要这样做。拟议的研究将确定可为以下方面提供基础的原则和方法：在 AIAN 社区中进行有效的 PMR 与我们的 AIAN 社区咨询小组合作，我们将： (1) 收集各研究点利益相关者的实证数据，了解社区观点关于 PM 和 PMR 参与； (2) 与每个地点的部落领导层召开当地对话以进行审查目标 1 研究结果并讨论部落健康优先事项、研究结果返回和数据管理，除了在阿拉斯加和蒙大拿州的 AIAN 部落领袖之间举行跨地点审议，以确定（三）开展全面沟通计划为每个研究地点绘制关键信息、受众和沟通工具，以分享结果从这项工作中，我们与包括其他部落组织、研究人员在内的各个利益相关者一起工作与部落社区和研究资助者合作；(4) 召开全国会议以确定领域在 AIAN 社区实施 PMR 时需要克服的共识和挑战。