Weiss Elliott Mark, Porter Kathryn M, Sullivan Tara R, Sotelo Guerra Laura J, Anderson Emily E, Garrison Nanibaa' A, Baker Laura, Smith Jodi M, Kraft Stephanie A
From the Department of Pediatrics (EM Weiss, JM Smith, SA Kraft), University of Washington School of Medicine, Seattle, Wash; Treuman Katz Center for Pediatric Bioethics and Palliative Care (EM Weiss, KM Porter, and SA Kraft), Seattle Children's Research Institute, Seattle, Wash.
Treuman Katz Center for Pediatric Bioethics and Palliative Care (EM Weiss, KM Porter, and SA Kraft), Seattle Children's Research Institute, Seattle, Wash.
Acad Pediatr. 2024 Mar;24(2):318-329. doi: 10.1016/j.acap.2023.06.032. Epub 2023 Jul 11.
Difficulty recruiting individuals from minoritized and underserved populations for clinical research is well documented and has health equity implications. Previously, we reported findings from interviews with research staff about pediatric research recruitment processes. Respondents raised equity concerns related to recruitment and enrollment of participants from minoritized, low resourced, and underserved populations. We therefore decided to perform a secondary coding of the transcripts to examine equity-related issues systematically.
We conducted a process of secondary coding and analysis of interviews with research staff involved in recruitment for pediatric clinical research. Through consensus we identified codes relevant to equity and developed a conceptual framework including 5 stages of research.
We analyzed 28 interviews and coded equity-related items. We report 6 implications of our findings. First, inequitable access to clinical care is an upstream barrier to research participation. Second, there is a need to increase research opportunities where underserved and under-represented populations receive care. Third, increasing research team diversity can build trust with patients and families, but teams must ensure adequate support of all research team members. Fourth, issues related to consent processes raise institutional-level opportunities for improvement. Fifth, there are numerous study procedure-related barriers to participation. Sixth, our analysis illustrates that individuals who speak languages other than English face barriers across multiple stages.
Research staff members identified equity-related concerns and recommended potential solutions across 5 stages of the research process, which may guide those endeavoring to improve research recruitment for pediatric patients from minoritized and underserved populations.
招募少数族裔和医疗服务不足人群参与临床研究存在困难，这一点已有充分记录，且对健康公平性有影响。此前，我们报告了对研究人员关于儿科研究招募过程的访谈结果。受访者提出了与招募和纳入少数族裔、资源匮乏和医疗服务不足人群参与者相关的公平性问题。因此，我们决定对访谈记录进行二次编码，以系统地研究与公平性相关的问题。
我们对参与儿科临床研究招募的研究人员进行的访谈进行了二次编码和分析。通过共识，我们确定了与公平性相关的编码，并制定了一个包括研究5个阶段的概念框架。
我们分析了28次访谈，并对与公平性相关的项目进行了编码。我们报告了研究结果的6个影响。第一，获得临床护理的不公平是参与研究的上游障碍。第二，需要增加在医疗服务不足和代表性不足人群接受护理的地方的研究机会。第三，增加研究团队的多样性可以与患者及其家庭建立信任，但团队必须确保对所有研究团队成员提供充分支持。第四，与同意程序相关的问题为机构层面的改进提供了机会。第五，参与研究存在许多与研究程序相关的障碍。第六，我们的分析表明，说英语以外语言的人在多个阶段都面临障碍。
研究人员确定了与公平性相关的问题，并在研究过程的5个阶段推荐了潜在的解决方案，这可能会指导那些致力于改善从少数族裔和医疗服务不足人群中招募儿科患者参与研究的人。
