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

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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.

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Acknowledgments

The authors thank Heather Carman Kuczynski, MPH, CHES for focus group facilitation; Noa Appleton, MPH for review of manuscript and technical assistance; and the participants of the 2013 and 2014 ISC focus groups. This work was supported by National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute on Minority Health and Health Disparities (NIMHD) (U24#MD006961, PI: Bernadette Boden-Albala).

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Authors and Affiliations

  1. CUNY School of Public Health and Health Policy, City University of New York, 55 West 125th St., New York, NY, 10027, USA

    Sean J. Haley

  2. Division of Social Epidemiology, College of Global Public Health, New York University, 41 East 11th St, 7th Floor, New York, NY, USA

    Lauren E. Southwick, Nina S. Parikh, Jazmin Rivera & Bernadette Boden-Albala

  3. Department of Kinesiology, University of Wisconsin-Madison, 2176 Medical Sciences Center, 1300 University Avenue, Madison, WI, USA

    Dorothy Farrar-Edwards

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  1. Sean J. Haley
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  3. Nina S. Parikh
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Corresponding author

Correspondence to Sean J. Haley.

Ethics declarations

The New York University’s Committee on Activities Involving Human Subjects (UCAIHS) approved the study.

Funding

This work was supported by National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute on Minority Health and Health Disparities (NIMHD) (U24#MD006961, PI: Bernadette Boden-Albala).

Conflicts of Interest

The authors declare that they have no conflicts of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

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Haley, S.J., Southwick, L.E., Parikh, N.S. et al. Barriers and Strategies for Recruitment of Racial and Ethnic Minorities: Perspectives from Neurological Clinical Research Coordinators. J. Racial and Ethnic Health Disparities 4, 1225–1236 (2017). https://doi.org/10.1007/s40615-016-0332-y

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