Improving Recruitment, Engagement, and Access for Community Health Equity for BRAIN Next-Generation Human Neuroimaging Research and Beyond (REACH for BRAIN)

改善 BRAIN 下一代人类神经影像研究及其他领域的社区健康公平的招募、参与和获取 (REACH for BRAIN)

• 批准号: 10730955
• 负责人: Susie Yi Huang
• 金额: $ 54.02万
• 依托单位: HARVARD MEDICAL SCHOOL
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2027-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10730955
• 关键词: Address; Anatomy; BRAIN initiative; Behavior; Biological; Black race; Boston; Brain; Brain imaging; Categories; Cognition; Communities; Community Health; Consensus; Data; Data Element; Data Set; Decision Aid; Dedications; Development; Disease; Education; Enrollment; Ethics; Ethnic Origin; Evaluation; Event; Foundations; Funding; Genetic; Glean; Goals; Guidelines; Health; Human; Human Resources; Imaging technology; Individual; Informed Consent; Intervention; Joints; Journals; Justice; Latinx; Learning; Literature; Magnetic Resonance Imaging; Maps; Measures; Minority Groups; Modeling; Neuronal Plasticity; Neurosciences; Neurosciences Research; Outcome; Ownership; Participant; Pathway interactions; Population Heterogeneity; Process; Professional Organizations; Publications; Race; Recording of previous events; Reporting; Research; Research Personnel; Research Project Grants; Sampling; Science; Shapes; Speed; Structure; Technology; Theory of Change; Tissues; Underrepresented Populations; United States National Institutes of Health; Variant; Work; brain research; clinical application; community engaged research; community engagement; connectome; data sharing; demographics; diversity and inclusion; essentialism; evidence base; health equity; implementation framework; improved; innovative neurotechnologies; interest; member; minority communities; neural; neuroethics; neuroimaging; neurotechnology; next generation; novel; racism; recruit; repository; sociodemographics; symposium; technology development; technology validation; tool; web site; working group

Project Summary / Abstract Although BRAIN 2.0 called for the BRAIN Initiative to “prioritize diversity and inclusion as a fundamental pillar,” research with the human neuroimaging technologies being developed by BRAIN Initiative continues to rely on non-representative convenience samples. This raises neuroethics concerns related to access and justice, and scientific concerns because non-representative samples undermine most key assumptions supporting causal inference in research. Our proposal for Improving Recruitment, Engagement, and Access for Community Health Equity for BRAIN Next-Generation Human Neuroimaging Research and Beyond (REACH for BRAIN) will directly address these ethical and scientific challenges. REACH for BRAIN will utilize community engagement with Black and Latinx stakeholder networks, to co-create evidence-based solutions and ethical guidance to expand the inclusiveness of participation in NIH BRAIN research and human neuroimaging studies more broadly. Aim 1: Utilizing a stakeholder network, Outcome Map, and Theory of Change (ToC) already established in pilot work, and initially targeting recruitment for research with the BRAIN Initiative supported Connectome 2.0 project, community members, neuroscientists, and neuroethics experts will co-develop and implement a targeted, community-led and participant-centered deliverables to increase the participation of underrepresented and minoritized (URM) groups in neuroimaging research. Using Community Engagement Studios, REACH for BRAIN will facilitate bi-directional learning between community members and the research teams, providing local value for the community and creating a foundation for neuroimaging researchers to implement the framework, and engage and recruit motivated participants from URM communities. Initial implementation of the framework will be by Connectome 2.0 researchers at the Martinos Center, to be followed by evaluation and then expansion to additional neuroimaging research projects at MGH and Harvard. Aim 2: Given the fraught history of scientific racism and biological essentialism in brain science, Aim 1 efforts to create appropriately diverse participation in neuroimaging must be accompanied by guidance on how to reliably measure and report on “race,” “ethnicity,” “ancestry,” and related sociodemographic categories. In Aim 2 we will convene an interdisciplinary expert Working Group (WG) to create consensus ethical guidance and proposed data elements for measuring and reporting demographics in more representative neuroscience research, and we will create applied tools: a) a decision-aid for researchers for working with race, ethnicity, and ancestry data in neuroimaging research; (b) an educational tool for community members; and c) a template for neuroscience journal editors on publication guidelines for reporting race in neuroimaging studies. Impact and Deliverables: We will widely disseminate the project’s tools and guidance via: a dedicated website, co-created community events; national public events co-hosted by project partners; roundtables with journal editors; conference presentations and academic publications; and formal submission to the NIH CDE Repository.

项目概要/摘要 尽管 BRAIN 2.0 呼吁 BRAIN 倡议“优先考虑多样性和包容性作为基本原则 BRAIN Initiative 正在开发的人类神经成像技术的研究继续 依赖非代表性的便利样本，这引起了与获取和正义相关的神经伦理学担忧， 和科学问题，因为非代表性样本破坏了支持的大多数关键假设 研究中的因果推理。我们关于改善社区招募、参与和访问的提案。 BRAIN 下一代人类神经影像研究及其他领域的健康公平 (REACH for BRAIN) 将 REACH for BRAIN 将利用社区参与来直接解决这些道德和科学挑战。 与黑人和拉丁裔利益相关者网络共同创建基于证据的解决方案和道德指导 更广泛地扩大参与 NIH BRAIN 研究和人类神经影像研究的包容性。 目标 1：利用已建立的利益相关者网络、成果图和变革理论 (ToC) 试点工作，最初目标是通过 BRAIN Initiative 支持的 Connectome 2.0 招募研究人员 项目、社区成员、神经科学家和神经伦理学专家将共同开发和实施 有针对性、以社区为主导、以参与者为中心的交付成果，以增加代表性不足的人的参与 和少数群体 (URM) 使用社区参与工作室、REACH 进行神经影像研究。 BRAIN 将促进社区成员和研究团队之间的双向学习，为当地提供 为社区创造价值，并为神经影像研究人员实施该框架奠定基础， 吸引并招募来自 URM 社区的积极参与者。 该框架的初步实施。 将由 Martinos 中心的 Connectome 2.0 研究人员进行评估，然后进行扩展 麻省总医院和哈佛大学的其他神经影像研究项目。 目标 2：考虑到脑科学领域科学种族主义和生物本质主义的令人担忧的历史，目标 1 的努力 为了创造适当多样化的神经影像学参与，必须伴随着如何进行的指导 可靠地衡量和报告“种族”、“民族”、“血统”和相关的社会人口统计类别。 2 我们将召集一个跨学科专家工作组（WG），以达成共识的道德指导和 提议的用于在更具代表性的神经科学中测量和报告人口统计数据的数据元素 研究，我们将创建应用工具：a）为研究人员提供有关种族、民族和种族问题的决策辅助工具 神经影像研究中的祖先数据；(b) 社区成员的教育工具；以及 c) 的模板； 神经科学期刊编辑关于报告神经影像学影响和种族的出版指南。 可交付成果：我们将通过以下方式广泛传播该项目的工具和指南： 共同创建的专用网站 社区活动；由项目合作伙伴共同主办的国家公共活动；与期刊编辑的圆桌会议； 会议演讲和学术出版物；以及正式提交给 NIH CDE 存储库。