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Trial Participation and Inclusion

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Ethnogeriatrics

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Abstract

Improving clinical research participation among diverse populations continues to be a challenge, despite governmental policy which mandates the inclusion of women and minorities in clinical studies. Underrepresentation of these groups contributes to a literature that fails to serve all populations with equal effectiveness and lessens opportunities to eliminate health disparities. The lack of inclusion of Blacks, Hispanics, Native Americans, Asians, and Pacific Islanders, along with women, contributes to a scientific literature that neglects the lives of many who it was intended to serve. Investing in historically disenfranchised populations in a manner that yields a better understanding of their communities, cultures, morals, attitudes, values, and beliefs will require a facilitated shift in perspective and behaviors of researchers and participants. The effectiveness of science will be impaired, and health disparities will continue to increase without intentional and strategic efforts to engage diverse communities in research and clinical trials. In this chapter, the authors address the significance of minority inclusion in research, outline unique challenges to recruitment and retention, and offer important concepts and methodologies that address these challenges.

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References

  1. Corbie-Smith G, Thomas SB, St. George DMM. Distrust, race and research. Arch Intern Med. 2002;162:2458–64.

    Article  PubMed  Google Scholar 

  2. Brandon DT, Isaac LA, LaVeist TA. The legacy of Tuskegee and trust in medical care: is Tuskegee responsible for race differences in mistrust of medical care? J Natl Med Assoc. 2005;97(7):951–6.

    PubMed  PubMed Central  Google Scholar 

  3. Thomas SB, Crouse QS. Public Health then and now. The Tuskegee syphilis study, 1932 to 1972: Implications for HIV education and AIDS risk education programs in the Black community. Am J Public Health. 1991;81:1498–504.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  4. Delaney D. Race, place and the law, 1836. Austin: University of Texas Press; 1998.

    Google Scholar 

  5. Dilworth-Anderson P, Thaker S, Burke JM. Recruitment strategies for studying dementia in later life among diverse cultural groups. Alzheimer Dis Assoc Disord. 2005;19(4):256–60.

    Article  PubMed  Google Scholar 

  6. Noah B. The participation of underrepresented minorities in clinical research. Am J Law Med. 2003;29:221–45.

    PubMed  Google Scholar 

  7. George S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.Am J Public Health. 2014 Feb;104(2):e16-31. doi: 10.2105/AJPH.2013.301706. Epub 2013 Dec 12..

    Google Scholar 

  8. Dancy BL, Wilbur J, Talashek M, Bonner G, Barnes-Boyd C. Community-based research: barriers to recruitment of African Americans. Nurs Outlook. 2004;52:234–40.

    Article  PubMed  Google Scholar 

  9. Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer. 2008;112:228–42.

    Article  PubMed  Google Scholar 

  10. Gamble VN. Under the shadow of Tuskegee: African Americans and health care. Am J Public Health. 1997;87:1773–8.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  11. Gollin LS, Harrigan RC, Calderon JL, Perez J, Easa D. Improving Hawaiian and Filipino involvement in clinical research opportunities: qualitative findings from Hawaii. Ethn Dis. 2005;15(4 Suppl 5):111–9.

    Google Scholar 

  12. Herring P, Montgomery S, Yancey AK, Williams D, Fraser G. Understanding the challenges in recruiting Blacks to a longitudinal cohort study: The Adventist Health Study. Ethn Dis. 2004;14(3):423–30.

    PubMed  Google Scholar 

  13. Moreno-John G, Gachie A, Fleming CM, Nápoles-Springer A, Mutran E, Manson SM, et al. Ethnic minority older adults participating in clinical research: developing trust. J Aging Health. 2004;16:93S–123.

    Article  PubMed  Google Scholar 

  14. Bailey JM, Bieniasz ME, Kmak D, Brenner DE, Ruffin MT. Recruitment and retention of economically underserved women to a cervical cancer prevention trial. Appl Nurs Res. 2004;17:55–60.

    Article  PubMed  Google Scholar 

  15. Brown DM, Thorne JE, Foster GL, Duncan JL, Brune LM, Muñana A, et al. Factors affecting attrition in a longitudinal study of patients with AIDS. AIDS Care. 2006;18:821–9.

    Article  CAS  PubMed  Google Scholar 

  16. Anderson RT, Ory M, Cohen S, McBride JS. Issues of aging and adherence to health interventions. Control Clin Trials. 2000;21:171S–83.

    Article  CAS  PubMed  Google Scholar 

  17. Cassidy EL, Baird E, Sheikh JI. Recruitment and retention of elderly patients in clinical trials: issues and strategies. Am J Geriatr Psychol. 2001;9:136–40.

    Article  CAS  Google Scholar 

  18. Warren-Findlow J, Prohaska T, Freedman D. Challenges and opportunities in recruiting and retaining underrepresented populations into health promotion research. Gerontologist. 2003;43:37–46.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Dilworth-Anderson P, Williams SW. Recruitment and retention strategies for longitudinal African American caregiving research: The Family caregiving Project. J Ageing Health. 2004;16:137S–56.

    Article  Google Scholar 

  20. Noe TD, Manson SM, Croy C, McGough H, Henderson JA, Buchwald DS. The influence of community-based participatory research principles on the likelihood of participation in health research in American Indian communities. Ethn Dis. 2007;17 Suppl 1:S6–14.

    PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  22. Gappoo S, Montgomery ET, Gerdts C, Naidoo S, Chidanyika A, Nkala B, et al. Novel strategies implemented to ensure high participant retention rates in a community based HIV prevention effectiveness trial in South Africa and Zimbabwe. Contemp Clin Trials. 2009;30:411–8.

    Article  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  24. Christian MC, Trimble EL. Increasing participation of physicians and patients form underrepresented racial and ethnic groups in National Cancer Institute-sponsored clinical trials. Cancer Epidemiol Biomarkers Prev. 2003;12:277S–83.

    PubMed  Google Scholar 

  25. Edwards CL, Primm A, Johnson S, Feliu M, O’Garo K, Bennett GG, et al. Reconsideration of the training of psychiatrists and mental health professionals: helping to make soup. J Natl Med Assoc. 2006;98(9):1498–500.

    PubMed  PubMed Central  Google Scholar 

  26. Rich J, Ro M. A Poor man’s plight: uncovering the disparity in men’s health. Battle Creek: WK Kellog Foundation Report; 2002. p. 1–38.

    Google Scholar 

  27. Durant RW, Legedza AT, Marcantonio ER, Freeman MB, Landon BE. Willingness to participate in clinical trials among African Americans and whites previously exposed to clinical research. J Cult Divers. 2011 Spring;18(1):8–19.

    Google Scholar 

  28. Byrd GS, Edwards CL, Kelkar VA, Phillips RG, Byrd JR, Som-Pimpong D, et al. Recruiting intergenerational African American males for biomedical research studies: a major research challenge. J Natl Med Assoc. 2011;103(6):480–7.

    Article  PubMed  Google Scholar 

  29. Lang R, Starks TD, Som-Pimpong D and Byrd GS. A long-term community investment model for empowering older African Americans to participate in Alzheimer’s disease genetics research. In: Alzheimer’s Association International Conference (AAIC), Vancouver, 14–19 July 2012.

    Google Scholar 

  30. Steinman L, Hammerback K, Snowden M. It could be a pearl to you: exploring recruitment and retention of the program to encourage active, rewarding lives (PEARLS) with hard-to-reach populations. Gerontologist. 2015;55(4):667–76.

    Article  PubMed  Google Scholar 

  31. Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, Pratt LA, et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2006;19:1–10.

    Google Scholar 

  32. Ard JD, Durant RW, Edwards LC, Svetkey LP. Perceptions of African-American culture and implications for clinical trial design. Ethn Dis. 2005 Spring;15(2):292–9.

    Google Scholar 

  33. Mainous III AG, Smith DW, Geesey ME, Tilley BC. Factors influencing physician-referrals of patients to clinical trials. J Natl Med Assoc. 2008;100(11):1298–303.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Lang R, Kelkar VA, Byrd JR, Edwards CL, Pericak-Vance M, Byrd GS. African American participation in health-related research studies: indicators for effective recruitment. J Public Health Manag Pract. 2013;19(2):1110–8.

    Article  Google Scholar 

  35. Ballard EL, Nash F, Raiford K, Harrell LE. Recruitment of Black elderly for clinical research studies of dementia: the CERAD experience. Gerontologist. 1993;33(4):561–5.

    Article  CAS  PubMed  Google Scholar 

  36. Yancey A.K., Ortega A.N. and Kumanyika SK. (2006). Effective recruitment and retention of minority research participants. Annual Review of Public health; 27:1–28.

    Google Scholar 

  37. Ellish NJ, Scott D, Royak-Schaler R, Higginbotham EJ. Community-based strategies for recruiting older, African Americans into a behavioral intervention study. J Natl Med Assoc. 2009;101(11):1104–10.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Farmer DF, Jackson SA, Camacho F, Hall MA. Attitudes of African American and low socioeconomic status white women toward medical research. J Health Care Poor Underserved. 2007;18:85–99.

    Article  PubMed  Google Scholar 

  39. Frierson GM, Morrow JR, Vidales A. Successful minority recruitment and adherence in physical activity internet-based research: the WIN Study. J Natl Med Assoc. 2012;104(11–12):544–54.

    Article  PubMed  Google Scholar 

  40. Gilliss CL, Lee KA, Gutierrez Y, Taylor D, Beyene Y, Neuhaus J, et al. Recruitment and retention of health minority women into community-based longitudinal research. J Womens Health Gend Based Med. 2001;20:77–85.

    Article  Google Scholar 

  41. Lang R, Kelkar VA, Byrd JR, Starks T, Edwards CL, Byrd GS. Beyond the barriers: factors that influence African Americans to participate in research. J Parkinsons Dis Alzheimers Dis. 2014;1(1):4.

    Google Scholar 

  42. Levkoff S, Sanchez H. Lessons learned about minority recruitment and retention from the Centers on Minority Aging and Health Promotion. Gerontologist. 2003;43:18–26.

    Article  PubMed  Google Scholar 

  43. Witham MD, McMurdo ME. How to get older people included in clinical studies. Drugs Aging. 2007;24:187–96.

    Article  PubMed  Google Scholar 

  44. Smith YR, Johnson AM, Newman LA, Greene A, Johnson TRB, Rogers JL. Perceptions of clinical research participation among African American women. J Womens Health. 2007;16:423–8.

    Article  Google Scholar 

  45. Williams MM, Meisel MM, Williams J, Morris JC. An interdisciplinary Outreach model of African American recruitment of Alzheimer’s disease research. Gerontologist. 2011;51 Suppl 1:S134–41.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Arean PA, Alvidrez J, Nery R, Estes C, Linkins K. Recruitment and retention of older minorities in mental health services research. In: Curry L, Jackson J, editors. The science of inclusion. Washington, DC: Gerontological Society of America; 2003. p. 17–25.

    Google Scholar 

  47. Burns D, Soward A, Skelly A, Leeman J, Carlson J. Effective recruitment and retention strategies for older members of rural minorities. Diabet Educ. 2008;34:1045–52.

    Article  Google Scholar 

  48. Chadiha LA, Washington OG, Lichtenberg PA, Green CR, Daniels KL, Jackson JS. Building a registry of research volunteers among older Urban African Americans: recruitment processes and outcomes from a community-based partnership. Gerontologist. 2011;51 Suppl 1:S106–15.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Byrd G, Edwards CL. Role of historically black colleges and universities in recruiting and retaining African American males in higher education. In: Frierson HT, Wyche JH, Pearson Jr W, editors. Black American males and higher education: research, programs and academe, Diversity in higher education series, vol. 7. Bingley: Emerald; 2009. p. 139–46.

    Chapter  Google Scholar 

  50. Collins KS, Hughes DL, Doty MM, Ives BL, Edwards JN, Tenney K. Diverse communities, common concerns: assessing health care quality for minority Americans. New York: The Commonwealth Fund; 2002.

    Google Scholar 

  51. Task Force on Community Preventive Services. The social environment. In: Zaza S, Briss PA, Harris KW, editors. The guide to community preventive services: what works to promote health? Atlanta: Oxford University Press; 2005. p. 329–84.

    Google Scholar 

  52. Branson RD, Davis Jr K, Butler KL. African Americans’ participation in clinical research: importance, barriers, and solutions. Am J Surg. 2007;193(1):3239.

    Article  Google Scholar 

  53. Basabe N, Paez D, Valencia J, González J, Rimé B, Diener E. Cultural dimensions, socioeconomic development, climate and emotional hedonic level. In: Manstead ASR, Fischer AH, editors. Culture and emotion. New York: Taylor & Francis; 2002.

    Google Scholar 

  54. National Center for Cultural Competence. Definitions of culture. Washington, DC: Author; 2001.

    Google Scholar 

  55. Winkelman M. Cultural awareness, sensitivity & competence. Peosta: Eddie Bowers; 2005.

    Google Scholar 

  56. Adderley-Kelly B, Green PM. Strategies for successful conduct of research with low-income African American populations. Nurs Outlook. 2005;531:147–52.

    Article  Google Scholar 

  57. Ammerman A, Corbie-Smith G, St George DM, Washington C, Weathers B, Jackson-Christian B. Research expectations among African American church leaders in the PRAISE! Project: a randomized trial guided by community-based participatory research. Am J Public Health. 2003;93:1720–7.

    Article  PubMed  PubMed Central  Google Scholar 

  58. Arean PA, Gallagher-Thompson D. Issues and recommendations for the recruitment and retention of older ethnic minority adults into clinical. J Consult Clin Psychol. 1996;64:875–80.

    Article  CAS  PubMed  Google Scholar 

  59. Hatch J, Moss N, Saran A, Presley-Cantrell L, Mallory C. Community research: partnership in black communities. Am J Prev Med. 1993;9(6 Suppl):27–31.

    CAS  PubMed  Google Scholar 

  60. Brodsky AE. More than epistemology; relationships in applied research with underserved communities. J Soc Issues. 2001;57:323–35.

    Article  Google Scholar 

  61. Corbie-Smith G, Williams IC, Blumenthal C, Dorrance J, Estroff SE, Henderson G. Relationships and communication in minority participation in research: multidimensional and multidirectional. J Natl Med Assoc. 2007;99(5):489–98.

    Article  PubMed  PubMed Central  Google Scholar 

  62. King N, Henderson G, Sein J. Relationships in research: a new paradigm. In: King N, Henderson G, Stein J, editors. Beyond regulations: ethics in human subjects research. Chapel Hill: The University of North Carolina Press; 1999. p. 1–17.

    Google Scholar 

  63. Lillie Blanton M, Hoffman SC. Conducting an assessment of health needs and resources in a racial/ethnic minority community. Health Serv Res. 1995;30:225–36.

    CAS  PubMed  PubMed Central  Google Scholar 

  64. Diaz VA, Mainous AG, McCall AA, Geesey ME. Factors affecting research participation in African American college students. Fam Med. 2008;40(1):46–51.

    PubMed  Google Scholar 

  65. Johnson VA, Powell-Young YM, Torres ER, Spruill IJ. A systematic review of strategies that increase the recruitment and retention of African American Adults in genetic and genomic studies. ABNF J. 2011;22(4):84–8.

    PubMed  PubMed Central  Google Scholar 

  66. Corbie-Smith G, Moody-Ayers S, Thrasher AD. Closing the circle between minority inclusion in research and health disparities. Arch Intern Med. 2004;164(13):1362–4.

    Article  PubMed  Google Scholar 

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Author information

Authors and Affiliations

  1. Department of Biology, College of Arts and Sciences, Center for Outreach in Alzheimer’s, Aging and Community Health (COAACH), North Carolina A&T State University, 1601 East Market Street GCB A-411, Greensboro, NC, 27411, USA

    Goldie S. Byrd Ph.D.

  2. Department of Biology, North Carolina A&T State University, 1601 E. Market Street, Greenboro, NC, 27411, USA

    Rosalyn Lang Ph.D.

  3. Department of Sociology and Social Work, North Carolina A&T State University, 1601 East Market Street, Greensboro, NC, 27411, USA

    Sharon W. Cook Ph.D., M.S.W.

  4. Department of Psychiatry and Behavioral Sciences, Department of Psychology & Neuroscience, and Department of Medicine, Duke UniversitySchool of Medicine, 932 Morreene Road, Durham, NC, 27705, USA

    Christopher L. Edwards Ph.D.

  5. Department of Biology, North Carolina A&T State University, 1601 E. Market Street, Greensboro, NC, 277411, USA

    Grace E. Byfield Ph.D.

Authors
  1. Goldie S. Byrd Ph.D.
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  2. Rosalyn Lang Ph.D.
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  3. Sharon W. Cook Ph.D., M.S.W.
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  4. Christopher L. Edwards Ph.D.
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  5. Grace E. Byfield Ph.D.
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Corresponding author

Correspondence to Goldie S. Byrd Ph.D. .

Editor information

Editors and Affiliations

  1. Division of Geriatrics and Nutritional Science, Washington University in Saint Louis School of Medicine, St. Louis, Missouri, USA

    Lenise Cummings-Vaughn

  2. Division of Geriatrics Medicine Department of Internal Medicine, Saint Louis University, St. Louis, Missouri, USA

    Dulce M. Cruz-Oliver

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Byrd, G.S., Lang, R., Cook, S.W., Edwards, C.L., Byfield, G.E. (2017). Trial Participation and Inclusion. In: Cummings-Vaughn, L., Cruz-Oliver, D. (eds) Ethnogeriatrics. Springer, Cham. https://doi.org/10.1007/978-3-319-16558-5_6

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  • DOI: https://doi.org/10.1007/978-3-319-16558-5_6

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