TY - JOUR
T1 - Barriers and Strategies for Recruitment of Racial and Ethnic Minorities
T2 - Perspectives from Neurological Clinical Research Coordinators
AU - Haley, Sean J.
AU - Southwick, Lauren E.
AU - Parikh, Nina S.
AU - Rivera, Jazmin
AU - Farrar-Edwards, Dorothy
AU - Boden-Albala, Bernadette
N1 - Funding Information:
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).
Funding Information:
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).
Funding Information:
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). The New York University?s Committee on Activities Involving Human Subjects (UCAIHS) approved the study. 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).
Publisher Copyright:
© 2017, W. Montague Cobb-NMA Health Institute.
PY - 2017/12/1
Y1 - 2017/12/1
N2 - 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.
AB - 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.
KW - Barriers
KW - Clinical research coordinators
KW - Clinical trials
KW - Secondary 92C50
KW - Strategies MSC Primary 91C99
KW - Underrepresented populations
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U2 - 10.1007/s40615-016-0332-y
DO - 10.1007/s40615-016-0332-y
M3 - Article
C2 - 28176157
AN - SCOPUS:85013674186
SN - 2197-3792
VL - 4
SP - 1225
EP - 1236
JO - Journal of Racial and Ethnic Health Disparities
JF - Journal of Racial and Ethnic Health Disparities
IS - 6
ER -