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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：
9287096
负责人：
BERT Brandon BOYER
金额：
$ 72.62万
依托单位：
UNIVERSITY OF ALASKA FAIRBANKS
依托单位国家：
美国
项目类别：
财政年份：
2017
资助国家：
美国
起止时间：
2017-09-05 至 2017-12-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9287096
关键词：
Address Alaska Alaska Native American Indians Area Collaborations Communication Communication Tools Communities Community Health Complex Conflict (Psychology)Consensus Data Data Collection Databases 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 design disorder risk flexibility health care disparity 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.

项目总结/文摘