Barriers and Strategies for Recruitment of Racial and Ethnic Minorities: Perspectives from Neurological Clinical Research Coordinators

Abstract

Introduction Randomized Controlled Trials (RCTs) are the gold standard within evidence-based research. Low participant accrual rates, especially of underrepresented groups (e.g., racial-ethnic minorities) may jeopardize clinical studies’ viability and strength of findings. Research has begun to unweave clinical trial mechanics including the roles of clinical research coordinators, to improve trial participation rates. Methods Two semi-structured focus groups were conducted with a purposive sample of 29 clinical research coordinators (CRCs) at consecutive international stroke conferences in 2013 and 2014 to gain in-depth understanding of coordinator-level barriers to racial-ethnic minority recruitment and retention into neurological trials. Coded transcripts were used to create themes to define concepts, identify associations, summarize findings, and posit explanations. Results Barriers related to translation, literacy, family composition and severity of medical diagnosis were identified. Potential strategies included a focus on developing personal relationships with patients, community and patient education, centralized clinical trial administrative systems, and competency focused training and education for CRCs. Conclusion Patient level barriers to clinical trial recruitment are well documented. Less is known about barriers facing CRCs. Further identification of how and when barriers manifest, and the effectiveness of strategies to improve CRCs recruitment efforts is warranted.

Empowering the Clinical Research Coordinator in Academic Medical Centers

“…Although the National Institutes of Health define the PI as the individual who is primarily responsible for the clinical trial, 10 it is clear to all research staff that CRCs more often complete many of the responsibilities formally designated to the PI. 11 The demands on a successful PI are extensive and as a result, a CRC may feel a lack of engagement or support from their PI and other research staff. Participants who did not feel engaged with their PI were 90% less likely to have high retention ( Figure 3A).…”

Understanding the Impact of Patients’ Disease Types on Caregiving Time and Caregiver Burden: An Analysis of the Health Information National Trends Survey

“…This worrying nding underscores the urgent need for timely and effective interventions that could alleviate these underserved populations' caregiver burden, such as intervention programs that are tailored to these caregivers' unique unmet needs [50][51][52]. As these disadvantaged caregivers are often di cult to reach via traditional intervention measures [53,54], researchers may consider using more agile and exible programs, such as local reach programs [55][56][57][58][59] or technology-based solutions [60,61], to deliver relevant and effective health solutions to these caregivers in a convenient and cost-effective fashion.…”

Time- and Race-Specific Haematological Reference Intervals for Healthy Volunteer Trials: A Retrospective Analysis of Pooled Data From Multiple Phase I Trials

“…However, as described below, genetic and diurnal variation in WBC parameters is an acknowledged phenomenon. Adopting a single reference range is thus potentially unsuitable and could result in the underrepresentation of volunteers from ethnic minority groups in early phase clinical trials (Haley et al, 2017;Sheffet et al, 2018). Furthermore, a poor representation of these groups in phase I studies may call into question the validity of a clinical trial's findings (Hussain-Gambles et al, 2004), limit its scientific applications, and amplify health disparities .…”