Simon Melissa A, Haring Rodney, Rodriguez Elisa M, González Evelyn, Kaur Judith S, Kirschner Marcie, Tom Laura, O'Brian Catherine A, Katz Mira L
Department of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, 633 N St Clair, Suite 1800, Chicago, IL, 60611, USA.
Department of Cancer Prevention and Control, Roswell Park Comprehensive Cancer Center, Buffalo, NY, 14263, USA.
J Cancer Educ. 2019 Dec;34(6):1120-1129. doi: 10.1007/s13187-018-1418-5.
Racial/ethnic minorities are underrepresented in clinical research in the USA for multifarious reasons, including barriers to effective communication between researchers and potential research participants. To address the communication barriers between researchers and potential participants, we developed a Research Literacy Support (RLS) tool. The focus of this report is to present findings from the second and third phases of development that refined and assessed usability of the RLS tool. We utilized a mixed-methods approach that entailed iterative cognitive testing with participants (N = 52) from diverse racial/ethnic backgrounds and interviews with clinical research recruiters (N = 20) to modify and refine the design and content of the RLS tool (phase 2). This was followed by assessment of the usability of the RLS tool by 100 participants (phase 3). During phase 2, participants provided feedback about layout, word choice, and comprehension of the tool. In phase 3, participants recognized that they had gained knowledge about clinical research from the RLS tool, although they still had a substantial learning gap after using the tool, indicating an opportunity for further refinement. The RLS tool may help advance health equity by addressing communication barriers that may impede minority participation in clinical research.
在美国,由于多种原因,种族/族裔少数群体在临床研究中的代表性不足,这些原因包括研究人员与潜在研究参与者之间有效沟通的障碍。为了解决研究人员与潜在参与者之间的沟通障碍,我们开发了一种研究素养支持(RLS)工具。本报告的重点是展示该RLS工具在开发的第二和第三阶段所取得的成果,这些阶段对该工具进行了完善并评估了其可用性。我们采用了一种混合方法,包括对来自不同种族/族裔背景的参与者(N = 52)进行迭代认知测试,以及对临床研究招募人员(N = 20)进行访谈,以修改和完善RLS工具的设计和内容(第二阶段)。随后,由100名参与者对RLS工具的可用性进行评估(第三阶段)。在第二阶段,参与者对工具的布局、用词和理解提供了反馈。在第三阶段,参与者认识到他们从RLS工具中获得了有关临床研究的知识,尽管在使用该工具后他们仍存在很大的学习差距,这表明有进一步完善的空间。RLS工具可能有助于通过消除可能阻碍少数群体参与临床研究的沟通障碍来促进健康公平。