Coronado Gloria D, Rivelli Jennifer S, Serrato Vanessa, Thompson Jamie, Shafer Autumn, Tracy-Carter Danita, Warner Kayla, Shannon Jackilen
Kaiser Permanente Center for Health Research, Portland, OR, USA.
Oregon Health & Science University, Portland, OR, USA.
J Clin Transl Sci. 2024 May 22;8(1):e99. doi: 10.1017/cts.2024.544. eCollection 2024.
Members of many racial and ethnic population subgroups are underrepresented in clinical trials and research. We present perspectives on barriers and facilitators to study participation gathered from Hispanic participants in a population-based genetic screening study.
Seven focus groups (five in English and two in Spanish) were conducted with self-identified Hispanic participants of the Healthy Oregon Project (HOP), a large population-based cohort of adults residing in Oregon. HOP study participants complete surveys about cancer and chronic disease risks with the option to donate a saliva sample for no-cost genetic risk screening for inherited disorders. HOP invited Hispanic participants via email to join a focus group about their experiences. Focus groups, generally lasting 60-90 minutes, occurred in person and virtually. Notes were coded and content-analyzed.
49 Hispanic adults participated in the focus groups (37 women; 9 men; 3 non-binary people). Identified facilitators for HOP study participation were trust in the academic medical center leading the study, having a family member who was impacted by cancer, and receiving free genetic screening. Identified barriers were difficulty completing the family history survey, lack of understanding or familiarity with research, immigration status, and navigating technology challenges. Recommendations to improve recruitment of Hispanic populations included promoting the study at community events, clinics, or schools, simplifying the consenting process and providing patient-focused videos to demonstrate study tasks, providing real-time sample tracking, and offering monetary incentives.
Our findings can inform strategies for bolstering recruitment of Hispanic adults in biomedical research studies.
许多种族和族裔人口亚组的成员在临床试验和研究中的代表性不足。我们展示了从一项基于人群的基因筛查研究中的西班牙裔参与者那里收集到的关于参与研究的障碍和促进因素的观点。
对健康俄勒冈项目（HOP）中自我认定为西班牙裔的参与者进行了7个焦点小组讨论（5个用英语，2个用西班牙语），HOP是一项针对居住在俄勒冈州的大量成年人群体的队列研究。HOP研究参与者完成关于癌症和慢性病风险的调查，并可选择免费捐赠唾液样本以进行遗传性疾病的基因风险筛查。HOP通过电子邮件邀请西班牙裔参与者参加关于他们经历的焦点小组讨论。焦点小组讨论通常持续60 - 90分钟，以面对面和虚拟的方式进行。对笔记进行编码和内容分析。
49名西班牙裔成年人参与了焦点小组讨论（37名女性；9名男性；3名非二元性别者）。确定的参与HOP研究的促进因素包括对牵头研究的学术医疗中心的信任、有家庭成员受癌症影响以及接受免费基因筛查。确定的障碍包括难以完成家族病史调查、对研究缺乏了解或熟悉、移民身份以及应对技术挑战。改善西班牙裔人群招募的建议包括在社区活动、诊所或学校宣传该研究，简化同意程序并提供以患者为中心的视频来演示研究任务，提供实时样本追踪以及提供金钱激励。
我们的研究结果可为加强生物医学研究中西班牙裔成年人招募的策略提供参考。
