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Research Professionals’ Perspectives, Barriers, and Recommendations Regarding Minority Participation in Clinical Trials

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Journal of Racial and Ethnic Health Disparities Aims and scope Submit manuscript

Abstract

Objective

This study aims to investigate research professionals’ perspectives regarding minority participation in clinical trials.

Methods

A web-based survey of research professionals at US institutions receiving NIH and/or AHRQ funding to conduct clinical research in 2013. Descriptive statistics, mean, standard deviation (SD), and the Wilcoxon rank-sum test were utilized for analysis.

Results

Distributed were 13,041 surveys with 967 (7.4%) responses. Overall and race-stratified analyses included 633 and 521 surveys, respectively. A majority agreed that patients’ race (mean, 3.4; SD = 1.0) and primary language (mean, 4.0; SD = 0.9) have an effect on enrollment. They had more success in enrolling those whose primary language was the same as their own (mean, 3.8; SD = 1.0), and that a language barrier and time spent arranging for interpreters had prevented them from offering a study to potential candidates (mean, 3.2; SD = 1.2). Non-Caucasian respondents were more likely to agree that “fear of unknown side effects” was a deterrent for minorities (p < 0.01), “minorities are more likely to be unavailable for follow-up phone calls” (p = 0.07), and “the unavailability of translated material discourages non-English speakers from participation” (p = 0.08). They also were more likely to be neutral or agree with being discouraged from enrolling minorities because of the possibility of their withdrawal or being less likely to be available for phone follow-ups and follow-up visits (all p < 0.01).

Conclusion

Despite a few subtle racial differences in research professionals’ perspectives, a majority expressed no hesitation in enrolling minorities. Patients’ race and primary language appeared to influence enrollment. A language barrier appeared to be the strongest barrier for research professionals.

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Acknowledgements

We acknowledge Stephen W. Dusza, DrPH, for his help with the study design and statistical analysis. This study received unrestricted research grant funding from a community non-profit philanthropic trust, the Anne and Carl Anderson Trust.

Author information

Authors and Affiliations

  1. Department of Emergency Medicine Research, Lehigh Valley Health Network, Allentown, PA, USA

    Anita Kurt, Lauren Semler, Matthew Meyers, Bernadette G. Porter & Jeanne L. Jacoby

  2. Department of Emergency Medicine Research, Lehigh Valley Health Network, 2545 Schoenersville Road, 4th Floor, Bethlehem, 18017, USA

    Anita Kurt

  3. Department of Family Medicine, Lehigh Valley Health Network, Allentown, PA, USA

    Brian Stello

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  1. Anita Kurt
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Correspondence to Anita Kurt.

Ethics declarations

Ms. Semler and Mr. Meyers were Research Associates in the Department of Emergency Medicine Research at the time this work was completed. All persons listed as authors meet the criteria for authorship established by the ICMJE and take responsibility for the article’s content.

Ethical Approval

All procedures performed in this study involving human subjects were in accordance with the ethical standards of the IRB and with the 1964 Helsinki declaration and its later amendments.

Informed Consent

This anonymous and voluntary survey study was IRB approved as “exempt;” therefore, an alteration of informed consent was granted.

Funding

This study was supported by an unrestricted research grant funding from a non-philanthropic trust, the Anne and Carl Anderson Trust.

Conflict of Interest

The authors have no outside support, conflicts, or financial interests to disclose.

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Kurt, A., Semler, L., Meyers, M. et al. Research Professionals’ Perspectives, Barriers, and Recommendations Regarding Minority Participation in Clinical Trials. J. Racial and Ethnic Health Disparities 4, 1166–1174 (2017). https://doi.org/10.1007/s40615-016-0322-0

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  • DOI: https://doi.org/10.1007/s40615-016-0322-0

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