Cortés Yamnia I, Arcia Adriana, Kearney Joan, Luchsinger Jose, Lucero Robert J
University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Columbia University, New York City, New York, USA.
Qual Health Res. 2017 Jan;27(1):130-137. doi: 10.1177/1049732315627650. Epub 2016 Jan 29.
In this study, we explore community members' overall understanding and experience with biomedical research engagement. We conducted a qualitative analysis to explore a concept that emerged but was not specifically addressed in a pre-existing dataset obtained using four focus group sessions with 30 urban-dwelling community members. Transcripts were read in an iterative process, and an emergent content analysis was performed. Five main themes were identified: (a) engaging in research to contribute to personal or greater good, (b) hierarchy of trust, (c) the importance of disclosure and transparency, (d) practical barriers to research engagement, and (e) fear of research procedures. Community members view research engagement as a collaborative process whereby community members and researchers are involved in all stages of the investigation. Focusing on research engagement, and not merely participation, may enhance community knowledge of the research process and advance scientific knowledge.
在本研究中,我们探讨了社区成员对生物医学研究参与的总体理解和体验。我们进行了一项定性分析,以探究一个在使用与30名城市社区成员进行的四次焦点小组访谈所获得的现有数据集中出现但未具体涉及的概念。我们以迭代的方式阅读访谈记录,并进行了内容分析。确定了五个主要主题:(a) 参与研究以为个人或更大利益做出贡献;(b) 信任等级;(c) 披露和透明度的重要性;(d) 参与研究的实际障碍;以及 (e) 对研究程序的恐惧。社区成员将研究参与视为一个协作过程,在此过程中社区成员和研究人员参与调查的各个阶段。关注研究参与,而不仅仅是参与,可能会增强社区对研究过程的了解并推动科学知识的进步。