Panyanouvong Nicholas, Lella Paavani, Sunder Gowri, Lubensky Micah E, Dastur Zubin, Aouizerat Bradley, Lisha Nadra, Neilands Torsten, Flowers Elena, Lunn Mitchell R, Obedin-Maliver Juno, Flentje Annesa
The PRIDE Study/PRIDEnet, Stanford University School of Medicine, Stanford, California, United States.
Department of Epidemiology and Population Health, Stanford University School of Medicine, Stanford, California, United States.
Ann LGBTQ Public Popul Health. 2024 Sep;5(3):206-222. doi: 10.1891/lgbtq-2023-0045.
Sexual and gender minority (SGM) communities are underrepresented in biomedical studies, highlighting the importance of developing biospecimen collection protocols aimed at engaging SGM participants. We aimed to learn more about SGM participants' experiences with a remote ( not performed at a central location) biospecimen collection study pioneered by The PRIDE Study, a cohort study of SGM adults residing in the United States and its territories. Feedback was collected from 112 SGM participants following blood donation for a parent study investigating the relationship between minority stress, substance use, and epigenetic markers of substance use and minority stress. We used an inductive and collaborative approach to qualitative analysis and identified major themes and areas for protocol improvement. Major themes among participant feedback were: (1) communication with the research team, (2) convenience of donation, (3) interactions with clinical laboratory staff, and (4) anonymity and privacy. Most participants indicated that they experienced little to no problems during the donation process and expressed approval for the clarity and transparency of the informed consent process, ease of communication with the research team, and measures taken to protect participant confidentiality during their appointment. The most common challenges encountered by participants related to the inconvenience of handling and transporting study materials to the clinical laboratory site and clinical laboratory staff's unfamiliarity with the study protocol. Some participants indicated a preference for more elements of the study protocol ( transporting collection materials) to be left to the responsibility of the research team. Future studies should carefully consider the delegation of responsibility between participants and the research team to balance both study reach and participant accessibility. Alternative formats, such as at-home collection or collaboration with community health workers, may further enhance participant satisfaction and convenience.
性与性别少数群体(SGM)在生物医学研究中的代表性不足,这凸显了制定旨在吸引SGM参与者的生物样本采集方案的重要性。我们旨在更深入了解SGM参与者参与一项由PRIDE研究率先开展的远程(不在中心地点进行)生物样本采集研究的经历,PRIDE研究是一项针对居住在美国及其属地的SGM成年人的队列研究。在为一项母研究献血后,我们收集了112名SGM参与者的反馈,该母研究旨在调查少数群体压力、物质使用以及物质使用和少数群体压力的表观遗传标记之间的关系。我们采用归纳和协作的方法进行定性分析,并确定了方案改进的主要主题和领域。参与者反馈中的主要主题包括:(1)与研究团队的沟通,(2)捐赠的便利性,(3)与临床实验室工作人员的互动,以及(4)匿名性和隐私。大多数参与者表示,他们在捐赠过程中几乎没有遇到问题,并对知情同意过程的清晰透明、与研究团队沟通的便捷以及在预约期间采取的保护参与者隐私的措施表示认可。参与者遇到的最常见挑战与处理和将研究材料运送到临床实验室地点的不便以及临床实验室工作人员对研究方案的不熟悉有关。一些参与者表示倾向于将研究方案的更多内容(运输采集材料)留给研究团队负责。未来的研究应仔细考虑参与者和研究团队之间的责任分配,以平衡研究覆盖范围和参与者的可及性。替代形式,如在家中采集或与社区卫生工作者合作,可能会进一步提高参与者的满意度和便利性。