Utilizing Community-Based Participatory Action Research Approaches to Inform Equitable OCD Genetics Research in Diverse Populations

利用基于社区的参与性行动研究方法为不同人群的公平强迫症遗传学研究提供信息

• 批准号: 10819076
• 负责人: ERIC A. STORCH
• 金额: $ 12.74万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-17 至 2026-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10819076
• 关键词: Acculturation; Address; African; African American population; African ancestry; Attention; Attitude; Biomedical Research; Collaborations; Communication; Communities; Community Mental Health Centers; Consent; Data; Data Analyses; Development; Disparity; Doctor of Philosophy; Eligibility Determination; Ensure; Environment; Equation; Equity; Feedback; Genetic; Genetic Research; Genetic study; Goals; Health system; Hispanic; Human Genetics; Individual; Institution; Instruction; Interview; Knowledge; Language; Latin American; Latino; Latinx; Measurement; Medical; Medicine; Mental Health; Mentors; Minority Groups; Modeling; Obsessive-Compulsive Disorder; Participant; Persons; Population; Population Heterogeneity; Postdoctoral Fellow; Probability; Process; Protocols documentation; Recommendation; Research; Research Design; Research Methodology; Research Personnel; Risk; Risk Factors; Role; Science; Services; Structure; Suggestion; Surveys; Symptoms; Training; Translating; Trust; United States; clinical phenotype; college; community based participatory research; community organizations; community partnership; ethnic identity; ethnoracial disparity; field study; genetic information; genetic risk factor; graduate school; health literacy; minority communities; parent grant; patient engagement; programs; psychogenetics; racism; recruit; response; sample collection; skills; social stigma; sociocultural determinant; study population; success

Project Abstract The wide ethnoracial disparity in genetic studies for OCD impedes understanding of genetic risk factors, leading to downstream disparities in the application of genetic findings (e.g., polygenetic risk scores). The lack of representation in OCD genetics research naturally begets questions as to why this knowledge gap exists. For individuals from minoritized populations, concerns such as medical racism, acculturation barriers, mistrust of health systems, and mental health stigma are well-studied and commonly discussed contributing factors of biomedical research disparities in the United States. However, acknowledging these factors alone has not demonstrated success in addressing these disparities. More probable causes include culturally-deficient recruitment strategies and limited interface with community stakeholders to develop research approaches that reflect the needs of the population under study. For example, the occurrence of cross-cultural differences in OCD symptom presentation may impede individuals from believing that they are even eligible to participate in OCD genetics research.4 This suggests that the population is not hard to reach, but hardly reached. Moreover, limited attention is often devoted to developing coalitions with minoritized communities to better understand how to best engage participants in OCD genetics research, rather than simply attempt to recruit them. Investigative frameworks such as Community-Based Participatory Action Research (C-BPAR) are helpful approaches to draw from to best involve stakeholders in developing recruitment strategies with cultural humility. Therefore, the proposed diversity training supplement in support of a promising current postdoctoral fellow not currently engaged in the LATINO study (Ogechi Chidima Onyeka, Ph.D.) aims to advance the parent grant by utilizing C-BPAR to develop community-informed recommendations on culturally-relevant best practices for recruiting individuals of Latin American descent for OCD genetics research. The proposal also aims to expand the study population to include identifying recruitment strategies for individuals of African descent as they are (1) also underrepresented in OCD genetics research, and (2) ensure that African-descended people of Latine/x and/or Hispanic heritage are also adequately represented in this field of study. Lastly, data obtained will also inform the development of a pilot quantitative survey to better understand stakeholders' views on OCD genetics research based on community-informed concerns.

项目摘要