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Published on: January 12, 2018
Equity Concerns Across Pediatric Research Recruitment: An Analysis of Research Staff Interviews
Elliott Mark Weiss1, Kathryn M Porter2, Tara R Sullivan3
1From 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.
Background And Objectives:
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.
Methods:
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.
Results:
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.
Conclusions:
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.
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