Enhancing Participation of Underrepresented Groups in Biomarker Studies

加强代表性不足的群体对生物标志物研究的参与

• 批准号: 7753415
• 负责人: Dorothy Farrar Edwards
• 金额: $ 20.94万
• 依托单位: UNIVERSITY OF WISCONSIN-MADISON
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-07-23 至 2014-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7753415
• 关键词: Address; Adult; African American; Alzheimer' s Disease; American Indians; Area; Attitude; Autopsy; Awareness; Basic Science; Behavior; Behavioral; Belief; Biological Markers; Biomedical Research; Biopsy; Blood; Cardiovascular Diseases; Cerebrospinal Fluid; Characteristics; Chronic Disease; Clinical Research; Cognitive; Collection; Commit; Communities; Community Health; Community Health Education; Community Participation; Community Surveys; Data; Development; Discrimination; Disease Marker; Education; Education and Outreach; Educational Materials; Enrollment; Exclusion Criteria; Failure; Family; Feedback; Focus Groups; Fright; Genetic; Genetic screening method; Goals; Government-Sponsored Programs; Health; Health Educators; Health education; Image; Immigrant; Individual; Intention; Interview; Knowledge; Latino; Life Style; Liquid substance; Literature; Location; Longitudinal Studies; Lung diseases; Malignant Neoplasms; Measurable; Mediating; Medical; Methods; Minority; Minority Groups; Outcome; Participant; Persons; Physiological; Population; Prevention; Printed Media; Procedures; Process; Publications; Reliance; Research; Research Design; Research Personnel; Risk; Sampling; Side; Structure; Surveys; Testing; Time; Tissues; Training; Transportation; United States National Institutes of Health; Ursidae Family; Wisconsin; Work; base; career development; community based participatory research; cost; cultural competence; design; disability; disorder risk; health disparity; health equity; health literacy; informant; medically underserved; meetings; member; neuroimaging; outreach; outreach program; population based; preference; programs; socioeconomics; success; theories

A growing body of literature addresses the problems of recruitment and retention of minority participants in health related research programs.2 Historically, African Americans and other underrepresented groups have very low rates of participation in biomedical research.3"5 The results of both qualitative and quantitative studies have identified many common barriers to participation, as well as issues unique to each community. The majority of these studies have focused on African Americans, with fewer publications describing the attitudes and beliefs of Latinos and American Indians; however, the same themes consistently emerge across the groups. These six common factors include: 1) fear and mistrust based on episodes of unethical treatment by medical investigators or discrimination associated with government sponsored programs;6 2) low health literacy and lack of information about common health practices and chronic disease; 3) structural limitations in access to health for underrepresented populations; 4) sociocultural reliance on family and community for guidance and normative behaviors; 5) logistical barriers including the location of studies, transportation costs, time demands and study inclusion and exclusion criteria that may unintentionally limit enrollment of otherwise willing participants; and 6) perceived lack of cultural awareness and cultural competence on the part of many investigators and research staff.7

越来越多的文献论述了少数群体参与者的征聘和留用问题， 健康相关的研究计划。2历史上，非洲裔美国人和其他代表性不足的群体， 生物医学研究的参与率非常低。3“5定性和定量研究的结果 已经确定了许多共同的参与障碍，以及每个社区特有的问题。的 这些研究大多集中在非裔美国人身上，描述这种态度的出版物较少 拉丁美洲人和美洲印第安人的信仰;然而，同样的主题始终出现在整个 组这六个共同因素包括：1）基于不道德待遇事件的恐惧和不信任， 与政府资助项目相关的医学调查或歧视;6 2）健康状况不佳 识字和缺乏关于常见保健做法和慢性病的信息; 3） 为代表性不足的人口提供保健服务; 4）社会文化上依赖家庭和社区， 指导和规范行为; 5）后勤障碍，包括研究地点，交通费用， 时间要求和研究入选和排除标准，可能会无意中限制入组 愿意参与; 6）许多人认为缺乏文化意识和文化能力 调查员和研究人员。