Skip to main content
Log in

Racial Differences Among Factors Associated with Participation in Clinical Research Trials

  • Published:
Journal of Racial and Ethnic Health Disparities Aims and scope Submit manuscript

Abstract

Objective

To identify whether racial differences exist among various factors associated with patients’ decision to participate in clinical research trials.

Methods

A self-administered, IRB-approved survey was utilized with inclusion criteria requiring subjects to be 18 years of age or older, having active patient status and ability to complete the survey without assistance. Subjects were asked to rate potential influential motivators, barriers, and facilitators on a “no influence” (0) to “most influence” (4) scale for participation in research that tests a new drug or device. Kruskal-Wallis testing was used to identify factors significantly associated with race.

Results

Analysis included 1643 surveys: 949 (57.8 %) Caucasian; 217 (13.2 %) African-American; 317 (19.3 %) Hispanic; 62 (3.8 %) Multiracial; and 98 (6.0 %) “Other” minorities. Statistically significant differences (p ≤ .02) by race were found for five out of ten motivating factors. “How well the research study is explained to me” had the highest mean value for all races except other minorities, for whom “Knowledge learned from my participation will benefit someone in the future” scored highest. “Risk of unknown side-effects” was the greatest barrier for all races.

Conclusion

Racial differences exist not only between Caucasians and Minorities for the factors associated with their clinical trial participation, but also among different minority races themselves. To promote diversity in research, recruitment strategies for each individual race should be customized based on what matters to the target population.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

References

  1. Garber M, Arnold RM. Promoting the participation of minorities in research. Am J Bioeth. 2006;6(3):W14–20.

    Article  PubMed  Google Scholar 

  2. Phan VH, Moore MM, McLachlan AJ, et al. Ethnic differences in drug metabolism and toxicity from chemotherapy. Expert Opin Drug Metab Toxicol. 2009;5(3):243–57.

    Article  CAS  PubMed  Google Scholar 

  3. Eshera N, Itana H, Zhang L, et al. Demographics of clinical trials participants in pivotal clinical trials for new molecular entity drugs and biologics approved by FDA from 2010 to 2012. Am J Ther. 2015;22(6):435–55.

    Article  PubMed  Google Scholar 

  4. Chen Jr MS, Lara PN, Dang JH, et al. Twenty years post-NIH revitalization act: enhancing minority participation in clinical trials (EMPaCT): laying the groundwork for improving minority clinical trial accrual: renewing the case for enhancing minority participation in cancer clinical trials. Cancer. 2014;120(Suppl 7):1091–6.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Newman PA, Duan N, Roberts KJ, et al. HIV vaccine trial participation among ethnic minority communities: barriers, motivators, and implications for recruitment. J Acquir Immune Defic Syndr. 2006;41(2):210–7.

    Article  PubMed  Google Scholar 

  6. Branson RD, Davis K, Butler KL. African Americans’ participation in clinical research: importance, barriers and solutions. Am J. Surgery. 2007;193(1):32–9 .discussion 40

    Google Scholar 

  7. Sisk JE, Horowitz CR, Wang JJ, et al. The success of recruiting minorities, women, and elderly into a randomized controlled effectiveness trial. Mt Sinai J Med. 2008;75(1):37–43.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Rivers D, August E, Sehovic I, et al. A systematic review of the factors influencing African Americans’ participation in cancer clinical trials. Contemp Clin Trials. 2013;35(2):13–32.

    Article  PubMed  Google Scholar 

  9. Giuliano AR, Mokuau N, Hughes C, et al. Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors. Ann Epidemiol. 2000;10(8 Suppl):S22–34.

    Article  CAS  PubMed  Google Scholar 

  10. Daverio-Zanetti S, Schultz K, del Campo MA, et al. Is religiosity related to attitudes toward clinical trials participation? J Cancer Educ. 2015;30(2):220–4.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Kennedy BM, Ard JD, Harrison Jr L, et al. Cultural characteristics of African Americans: implications for the design of trials that target behavior and health promotion programs. Ethn Dis. 2007;17(3):548–54.

    PubMed  Google Scholar 

  12. Sengupta S, Strauss RP, DeVellis R, et al. Factors affecting African-American participation in AIDS research. J Acquir Immune Defic Syndr. 2000;24(3):275–84.

    Article  CAS  PubMed  Google Scholar 

  13. Evans KR, Lewis MJ, Hudson SV. The role of health literacy on African American and Hispanic/Latino perspectives on cancer clinical trials. J Cancer Educ. 2012;27(2):299–305.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Ford ME, Siminoff LA, Pickelsimer E, et al. Unequal burden of disease, unequal participation in clinical trials: solutions from African American and Latino community members. Health Soc Work. 2013;38(1):29–38.

    Article  PubMed  PubMed Central  Google Scholar 

  15. George S, Duran N, Norris KA. Systematic review of barriers and facilitators to minority research participation among African American, Latinos, Asian Americans and Pacific islanders. Am J Public Health. 2014;104(2):e16–31.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Calderón JL, Baker RS, Fabrega H, et al. An ethno-medical perspective on research participation: a qualitative pilot study. MedGenMed 2006;8(2):23.

  17. Mehta CR, Patel NR. IBM SPSS exact tests (ch.1:8). Armonk, NY: IBM Corporation; 2011 .http://www.cytel.com/hs-fs/hub/1670/file-2614061693-pdf. Accessed April 25, 2016

    Google Scholar 

  18. Dunn OJ. Multiple comparisons using rank sums. Technometrics. 1964;6(3):241–52.

    Article  Google Scholar 

  19. Juneau P. Simultaneous nonparametric inference in one-way layout using the SAS® system. http://www.lexjansen.com/pharmasug/2004/statisticspharmacokinetics/sp04.pdf. Accessed August 12th, 2016.

  20. Albrecht TL, Eggly SS, Gleason ME, et al. Influence of clinical communication on patients’ decision making on participation in clinical trials. J Clin Oncologia 2008;26(16):2666–2673.

  21. Coakley M, Fadiran EO, Parrish LJ, et al. Dialogues on diversifying clinical trials: successful strategies for engaging women and minorities in clinical trials. J Women's Health (Larchmt). 2012;21(7):713–6.

    Article  Google Scholar 

  22. Braunstein JB, Sherber NS, Schulman SP, et al. Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials. Medicine (Baltimore). 2008;87(1):1–9.

    Article  Google Scholar 

  23. Limkakeng AT, Oliveira LL, Moreira T, et al. Systematic review and metasummary of attitudes toward research in emergency medical conditions. J Med Ethics. 2014;40(6):401–8.

    Article  PubMed  Google Scholar 

  24. Schmotzer GL. Barriers and facilitators to participation of minorities in clinical trials. Ethn Dis. 2012;22(2):226–30.

    PubMed  Google Scholar 

  25. Schouten BC, Meeuwesen L. Cultural differences in medical communication: a review of the literature. Patient Educ Couns. 2006;64(1–3):21–34.

    Article  PubMed  Google Scholar 

  26. Paskett ED, Katz ML, DeGraffinreid CR, et al. Participation in cancer trials: recruitment of underserved populations. Clin Adv Hematol Oncol. 2003;1(10):607–13.

    PubMed  Google Scholar 

  27. Powell JH. Clinical trial diversity, drug development, and health disparities: A perspective from Project IMPACT. Monitor (newsletter). 2008;(12):29–33. http://www.africanamericanhealthmatters.com/uploads/JPowell-Clinicaltrialdiversity-drugdevelopment-healthdisparities.pdf. Accessed April 25, 2016.

  28. Valcarcel M, Diaz C, Santiago-Borrero PJ. Training and retaining of underrepresented minority physician scientists—a Hispanic perspective: NICHD-AAP workshop on research in neonatology. J Perinatol. 2006;26(Suppl 2):S49–52.

    Article  PubMed  Google Scholar 

  29. Smith YR, Johnson AM, Newman LA, et al. Perceptions of clinical research participation among African American women. J Women's Health (Larchmt). 2007;16(3):423–8.

    Article  Google Scholar 

  30. Ezeugwu CO, Laird A, Mullins CD, et al. Lessons learned from community-based minority health care serving system participation in a NIH clinical trial. J Natl Med Assoc. 2011;103(9–10):839–44.

    Article  PubMed  Google Scholar 

  31. Powell JH, Fleming Y, Walker-McGill CL, et al. The project IMPACT experience to date: increasing minority participation and awareness of clinical trials. J Nat Med Assoc. 2008;100(2):178–87.

    Article  Google Scholar 

  32. Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol. 2002;12(4):248–56.

    Article  PubMed  Google Scholar 

  33. Ulrich CM, Knafl KA, Ratcliffe SJ, et al. Developing a model of the benefits and burdens of research participation in cancer clinical trials. AJOB Prim Res. 2012;3(2):10–23.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Aponte-Rivera V, Dunlop BW, Ramirez C, et al. Enhancing Hispanic participation in mental health clinical research: development of a Spanish-speaking depression research site. Depress Anxiety. 2014;31(3):258–67.

    Article  PubMed  Google Scholar 

  35. Egleston BL, Pedraza O, Wong YN, et al. Characteristics of clinical trials that require participants to be fluent in English. Clin Trials. 2015;12(6):618–26.

    Article  PubMed  PubMed Central  Google Scholar 

  36. United States Census Bureau. Population projections, 2009 National Population Projections (Supplemental). https://www.census.gov/population/projections/data/national/2009.html. Accessed 4/25/16.

Download references

Acknowledgments

We acknowledge Bernadette Glenn Porter, BS, for her help with editing and formatting this manuscript. We also thank Matthew Meyers, BS, for his help with data entry, and our summer research scholars and interns, Adrian Paskey, BS, Jerry Chang, BS, Alex Winter, BS, Gordon Ridgeway, BS, and Aimee Rodriquez, BS, for their help with survey distribution and data collection.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Anita Kurt.

Ethics declarations

Ethical Approval

All procedures performed in this study 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

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

Funding

This work was funded by a non-profit philanthropic trust, the Anne and Carl Anderson Trust.

Conflict of Interest

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

Additional information

This work was funded by a non-profit philanthropic trust, the Anne and Carl Anderson Trust.

Electronic supplementary material

ESM 1

(PDF 218 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Kurt, A., Semler, L., Jacoby, J.L. et al. Racial Differences Among Factors Associated with Participation in Clinical Research Trials. J. Racial and Ethnic Health Disparities 4, 827–836 (2017). https://doi.org/10.1007/s40615-016-0285-1

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40615-016-0285-1

Keywords

Navigation