1 Department of Health Sciences Research, Mayo Clinic , Rochester, Minnesota.
2 College of Nursing, The Ohio State University , Columbus, Ohio.
J Womens Health (Larchmt). 2018 Oct;27(10):1242-1249. doi: 10.1089/jwh.2017.6791. Epub 2018 Jul 5.
Underrepresentation of African American women as research participants contributes to health disparities. Contemporary studies have focused on clinical trial (CT) participation; epidemiologic and genetic studies utilizing medical records and/or biological samples have received less attention. In partnership with The Links, Incorporated (The Links), a national service organization of professional African American women, this study sought to examine attitudes regarding chart review (CR) studies, genetic studies/biobanking (GEN), and CTs; develop; and evaluate an online education-to-action program.
In phase 1, focus groups were convened with members of The Links to inform the content and format of the program. Phases 2 and 3 involved designing and evaluating the program, respectively.
Thirty-four women across three focus groups shared attitudes and perceptions regarding research and provided guidance for program development. Subsequently, 244 women completed the program (77% response rate), including pre- and post-assessments. Participants indicating that they "definitely" or "probably" (responses combined) intend to participate in research increased from 36.5% to 69.3% (pre/post-program). Agreement with the statement "research in the U.S. is ethical" increased (52.9% to 74.4%) as did factual knowledge regarding each of the study types. There was a decrease in reporting "little or no understanding" of study types (Pre/Post: GEN: 66%/24.9%, CR: 62.9%/18.4%, CTs: 40.7%/15.5%). Pre-program, few were "very positive" about the study types (14.3% GEN, 15.0% CR, 28.6% CTs); post-program ratings increased and equalized (42.8% GEN, 43.0% CR, 42.5% CTs).
An online education-to-action program targeting professional African American women improved knowledge, perceptions of ethics, and intent to participate in biomedical research.
非裔美国女性在研究参与者中的代表性不足导致了健康差距。当代研究主要集中在临床试验 (CT) 参与度上；利用医疗记录和/或生物样本进行的流行病学和遗传学研究则受到较少关注。本研究与美国专业非裔女性的全国服务组织“链接”（The Links）合作，旨在检查参与者对病历回顾 (CR) 研究、遗传研究/生物库 (GEN) 和 CT 的态度；制定并评估一个在线教育行动项目。
在第 1 阶段，与“链接”成员举行了焦点小组会议，为项目的内容和形式提供信息。第 2 阶段和第 3 阶段分别涉及设计和评估该项目。
三个焦点小组的 34 名女性分享了她们对研究的态度和看法，并为项目的开发提供了指导。随后，有 244 名女性（77%的回复率）完成了该项目，包括前后评估。表示“肯定”或“可能”（综合回答）打算参与研究的参与者比例从 36.5%增加到 69.3%（项目前后）。对“美国的研究是合乎道德的”这一说法的认同度（52.9%至 74.4%）有所提高，对每种研究类型的事实性知识也有所增加。报告对研究类型“几乎不了解”或“不了解”的比例有所下降（前后：GEN：66%/24.9%，CR：62.9%/18.4%，CTs：40.7%/15.5%）。在项目之前，很少有人对研究类型“非常积极”（GEN：14.3%，CR：15.0%，CTs：28.6%）；在项目之后，对这些研究类型的评价提高且均衡（GEN：42.8%，CR：43.0%，CTs：42.5%）。
针对专业非裔美国女性的在线教育行动项目提高了她们在生物医学研究方面的知识、对道德的看法和参与意愿。
