Boston Medical Center, Section of Infectious Disease, Boston, MA, USA.
Boston Medical Center, The Pulmonary Center, Department of Medicine, Boston, MA, USA.
Health Expect. 2023 Jun;26(3):1118-1126. doi: 10.1111/hex.13726. Epub 2023 Mar 10.
The underrepresentation of Black, Indigenous, and People of Color (BIPOC) individuals in healthcare research limits generalizability and contributes to healthcare inequities. Existing barriers and attitudes toward research participation must be addressed to increase the representation of safety net and other underserved populations.
We conducted semi-structured qualitative interviews with patients at an urban safety net hospital, focusing on facilitators, barriers, motivators, and preferences for research participation. We conducted direct content analysis guided by an implementation framework and used rapid analysis methods to generate final themes.
We completed 38 interviews and identified six major themes related to preferences for engagement in research participation: (1) wide variation in research recruitment preferences; (2) logistical complexity negatively impacts willingness to participate; (3) risk contributes to hesitation toward research participation; (4) personal/community benefit, interest in study topic, and compensation serve as motivators for research participation; (5) continued participation despite reported shortcomings of informed consent process; and (6) mistrust could be overcome by relationship or credibility of information sources.
Despite barriers to participation in research studies among safety-net populations, there are also facilitators that can be implemented to increase knowledge and comprehension, ease of participation, and willingness to join research studies. Study teams should vary recruitment and participation methods to ensure equal access to research opportunities.
PATIENT/PUBLIC CONTRIBUTION: Our analysis methods and study progress were presented to individuals within the Boston Medical Center healthcare system. Through this process community engagement specialists, clinical experts, research directors, and others with significant experience working with safety-net populations supported data interpretation and provided recommendations for action following the dissemination of data.
黑人和少数族裔（BIPOC）个体在医疗保健研究中的代表性不足限制了研究结果的普遍性，并导致了医疗保健的不平等。必须解决现有的参与研究的障碍和态度，以增加安全网和其他服务不足人群的代表性。
我们在一家城市安全网医院对患者进行了半结构化的定性访谈，重点关注参与研究的促进因素、障碍、动机和偏好。我们根据实施框架进行了直接内容分析，并使用快速分析方法生成最终主题。
我们完成了 38 次访谈，确定了与参与研究意愿相关的六个主要主题：（1）对研究招募偏好存在广泛差异；（2）后勤复杂性对参与意愿产生负面影响；（3）风险导致对研究参与的犹豫；（4）个人/社区利益、对研究主题的兴趣和补偿是参与研究的动机；（5）尽管报告了知情同意过程的缺点，但仍继续参与；（6）可以通过关系或信息来源的可信度来克服信任问题。
尽管安全网人群参与研究存在障碍，但也有一些促进因素可以实施，以增加知识和理解、参与的便利性以及参与研究的意愿。研究团队应改变招募和参与方法，以确保安全网人群平等获得研究机会。
患者/公众贡献：我们将分析方法和研究进展呈现给波士顿医疗中心医疗系统内的个人。通过这一过程，社区参与专家、临床专家、研究主任和其他在安全网人群方面有丰富经验的人支持了数据解释，并在数据传播后提出了行动建议。
