Policy solutions to recruiting and retaining minority children in research

Abstract

D espite substantial investments across research, policy, and legislation, inequities in child health persist and represent a formidable challenge to improving health outcomes for children. Disparities have been demonstrated in numerous health-care settings and across a vast number of chronic conditions (1-4). Root causes of disparities are complex and frequently intertwine multilevel factors such as race/ethnicity, socioeconomic status, discrimination, psychosocial stress, education, economic opportunity, and neighborhood environment (5,6). Although studies documenting disparities in child health have been plentiful, evidencebased interventions and policy solutions to address inequities are still in their infancy. In this issue, Gkourogianni et al. (7) report on disparities in disease severity and outcomes among Hispanic and African-American children with Pediatric Cushing Disease (CD). The authors document disproportionately higher severity of CD in Hispanic and African-American children relative to white children both preoperatively and postoperatively. Both racial/ethnic minority groups also had higher proportions of diagnosis at an advanced stage. The authors postulate a number of mechanisms by which these disparities in CD severity scores occurred. They appropriately highlight variables at the level of the patient (e.g., genetics, social determinants of health), provider (e.g., fund of knowledge, quality of care), and health-care system (e.g., delays in referral, access to subspecialty care). Also important, the authors identify challenges in the conduct of research with respect to minorities being under-represented in pediatric oncology research protocols and clinical trials for rare diseases. Randomized controlled trials (RCTs) are considered the gold standard in determining the effectiveness of health-care interventions (8). However, the reliability of results can be compromised with differential enrollment or retention among subsets of participants (9,10). This disparity constitutes a major obstacle in establishing the effectiveness of treatment modalities in diverse pediatric populations. The aim of this commentary is to review the literature on pediatric disparities in recruitment and retention, and to identify policies and evidence-based strategies with the potential to improve minority participation and completion in clinical trials.

Community-based childhood obesity prevention intervention for parents improves health behaviors and food parenting practices among Hispanic, low-income parents

“…Furthermore, parents that completed the study were older than non-completers. Our experience is similar to that of other researchers where recruiting and retaining low-income populations in health-related studies remains difficult, especially those “hardest to reach” [ 41 , 43 ]. Evidence suggests that the most common barriers to recruitment and retention include socioeconomic status, education level, study location (school vs. home vs. community) and program/intervention targets (i.e.…”

“…In order eliminate the health disparities experienced by low-income, ethnic minorities, continued efforts to reduce participation barriers in research studies are needed. Innovative approaches, including comprehensive policies and evidence-based strategies to improve recruitment and retention is warranted [ 43 ].…”

Optimizing Recruitment of Black Adolescents into Behavioral Research: A Multi-Center Study

“…Barriers to the enrollment of BIPOC have been identified in a number of studies and include both pragmatic barriers (e.g., inability to miss work for enrollment visits, lack of transportation to study site) and interpersonal barriers (e.g., lack of trust in researchers, discomfort with being a "guinea-pig"; Winter et al, 2018). Recruitment of BIPOC youth for participation in clinical trials is hampered by similar barriers (Raphael et al, 2017). However, an additional factor affecting clinical trials focused upon BIPOC youth and families is the required participation by the youth's caregiver.…”

A perspective on enhancing representative samples in developmental human neuroscience: Connecting science to society

“…There may be multiple causes of this unfortunate loss of diversity, including logistical barriers (Nicholson et al, 2015;Flores et al, 2017;Raphael et al, 2017). Neuroimaging techniques, like Magnetic Resonance Imaging (MRI), can be time consuming.…”