Skip to main content

Advertisement

Log in

Educating Hispanics About Clinical Trials and Biobanking

  • Published:
Journal of Cancer Education Aims and scope Submit manuscript

Abstract

Hispanics are under-represented in clinical research. To ensure that the Hispanic population benefits from advances in public health and medicine, including personalized medicine, there is a need to increase their participation in clinical trials and biobanking. There is a great need for improving awareness and addressing concerns individuals may have about participation. The purpose of this study was to adapt, implement, and evaluate educational materials about clinical trials and biobanking for Hispanic individuals. We adapted existing materials based on focus group data. We then trained four promotoras de salud to deliver education to Hispanic adults in community settings in Houston, TX. The promotoras educated 101 Hispanic adults, 51 on biobanking and 50 on clinical trials. Study staff administered brief pre- and post-test questionnaires that measured benefits, barriers, norms, self-efficacy, and intention to participate in either clinical trials or biobanking. Our sample was predominately female (83%) and Spanish-speaking (69%) and made less than $25,000 a year (87%). This intervention increased perceived benefits of participating in biobanking and clinical trials, self-efficacy for donating biospecimens, and intention to participate in biobanking if invited. Perceived barriers to participating declined. This study demonstrated that brief education can result in improved perceptions and attitudes related to participation in biobanking and clinical trials, and could increase participation. Researchers and practitioners could use these educational materials to educate Hispanic community members on clinical research potentially increasing participation rates in the future.

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.

Similar content being viewed by others

References

  1. Gehlert SJ (2016) Abstract IA40: maximizing the benefits of precision medicine for cancer disparities. AACR

  2. Popejoy AB, Fullerton SM (2016) Genomics is failing on diversity. Nature 538(7624):161–164

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  3. Simon MA, de la Riva EE, Bergan R, Norbeck C, McKoy JM, Kulesza P, Dong XQ, Schink J, Fleisher L (2014) Improving diversity in cancer research trials: the story of the Cancer Disparities Research Network. J Cancer Educ 29(2):366–374

    Article  PubMed  PubMed Central  Google Scholar 

  4. Chen MS et al (2014) Twenty years post-NIH Revitalization Act: enhancing minority participation in clinical trials (EMPaCT): laying the groundwork for improving minority clinical trial accrual. Cancer 120(S7):1091–1096

    Article  PubMed  Google Scholar 

  5. Fisher JA, Kalbaugh CA (2011) Challenging assumptions about minority participation in US clinical research. Am J Public Health 101(12):2217–2222

    Article  PubMed  PubMed Central  Google Scholar 

  6. Haga SB (2010) Impact of limited population diversity of genome-wide association studies. Genet Med 12(2):81–84

    Article  PubMed  Google Scholar 

  7. Scott EA, Schlumpf KS, Mathew SM, Mast AE, Busch MP, Gottschall JL, for the National Heart, Lung, and Blood Institute Retrovirus Epidemiology Donor Study-II (REDS-II) (2010) Biospecimen repositories: are blood donors willing to participate? Transfusion 50(9):1943–1950

    Article  PubMed  PubMed Central  Google Scholar 

  8. Parra A, Karnad AB, Thompson IM (2014) Hispanic accrual on randomized cancer clinical trials: a call to arms. J Clin Oncol 32(18):1871–1873

    Article  PubMed  PubMed Central  Google Scholar 

  9. Siegel RL, Miller KD, Jemal A (2016) Cancer statistics, 2016. CA Cancer J Clin 66(1):7–30

    Article  PubMed  Google Scholar 

  10. Murthy VH, Krumholz HM, Gross CP (2004) Participation in cancer clinical trials: race-, sex-, and age-based disparities. Jama 291(22):2720–2726

    Article  CAS  PubMed  Google Scholar 

  11. Arevalo M, Heredia NI, Krasny S, Rangel ML, Gatus LA, McNeill LH, Fernandez ME (2016) Mexican-American perspectives on participation in clinical trials: a qualitative study. Contemp Clin Trials Commun 4:52–57

    Article  PubMed  PubMed Central  Google Scholar 

  12. Heredia NI, Krasny S, Strong LL, von Hatten L, Nguyen L, Reininger BM, McNeill LH, Fernández ME (2017) Community perceptions of biobanking participation: a qualitative study among Mexican-Americans in three Texas cities. Public Health Genomics 20(1):46–57

    Article  PubMed  Google Scholar 

  13. Dang JH et al (2014) Engaging diverse populations about biospecimen donation for cancer research. J Community Genet 5(4):313–327

    Article  PubMed  PubMed Central  Google Scholar 

  14. Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, Tilburt J, Baffi C, Tanpitukpongse TP, Wilson RF, Powe NR, Bass EB (2008) Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer 112(2):228–242

    Article  PubMed  Google Scholar 

  15. Calderón JL, Baker RS, Fabrega H, Conde JG, Hays RD, Fleming E, Norris K (2006) An ethno-medical perspective on research participation: a qualitative pilot study. Medscape Gen Med 8(2):23

    Google Scholar 

  16. George S, Duran N, Norris K (2014) A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am J Public Health 104(2):e16–e31

    Article  PubMed  PubMed Central  Google Scholar 

  17. Curbow B, Fogarty LA, McDonnell K, Chill J, Scott LB (2004) Can a brief video intervention improve breast cancer clinical trial knowledge and beliefs? Soc Sci Med 58(1):193–205

    Article  PubMed  Google Scholar 

  18. Jacobsen PB, Wells KJ, Meade CD, Quinn GP, Lee JH, Fulp WJ, Gray JE, Baz RC, Springett GM, Levine RM, Markham MJ, Schreiber FJ, Cartwright TH, Burke JM, Siegel RD, Malafa MP, Sullivan D (2012) Effects of a brief multimedia psychoeducational intervention on the attitudes and interest of patients with cancer regarding clinical trial participation: a multicenter randomized controlled trial. J Clin Oncol 30(20):2516–2521

    Article  PubMed  PubMed Central  Google Scholar 

  19. Manne S, Kashy D, Albrecht T, Wong YN, Flamm AL, Benson AB III, Miller SM, Fleisher L, Buzaglo J, Roach N, Katz M, Ross E, Collins M, Poole D, Raivitch S, Miller DM, Kinzy TG, Liu T, Meropol NJ (2014) Knowledge, attitudes, and self-efficacy as predictors of preparedness for oncology clinical trials: a mediational model. Med Decis Mak 34(4):454–463

    Article  Google Scholar 

  20. Ellington L, Wahab S, Sahami Martin S, Field R, Mooney KH (2006) Factors that influence Spanish-and English-speaking participants’ decision to enroll in cancer randomized clinical trials. Psycho-Oncology 15(4):273–284

    Article  PubMed  Google Scholar 

  21. Gao W, Ma GX, Tan Y, Fang C, Weaver J, Jin M, Lai P, Godwin AK (2014) Culturally appropriate education intervention on biospecimen research participation among Chinese Americans. Cancer Epidemiol Prev Biomarkers 23(3):383–391

    Article  Google Scholar 

  22. Ma GX et al (2013) The impact of a community-based clinical trial educational intervention among underrepresented Chinese Americans. Cancer Epidemiol Prev Biomarkers p. cebp. 0773.2013

  23. Thompson B, Hébert JR (2014) Involving disparate populations in clinical trials and biobanking protocols: experiences from the Community Network Program Centers. Cancer Epidemiol Prev Biomarkers 23(3):370–373

    Article  Google Scholar 

  24. Ford M et al (2012) Assessing an intervention to improve clinical trial perceptions among predominately African-American communities in South Carolina. Prog Community Health Partnersh 6(3):249

    Article  PubMed  PubMed Central  Google Scholar 

  25. Frew PM et al (2015) Results of a community randomized study of a faith-based education program to improve clinical trial participation among African Americans. Int J Environ Res Public Health 13(1):41

    Article  PubMed Central  Google Scholar 

  26. Banda DR, Libin AV, Wang H, Swain SM (2012) A pilot study of a culturally targeted video intervention to increase participation of African American patients in cancer clinical trials. Oncologist 17(5):708–714

    Article  PubMed  PubMed Central  Google Scholar 

  27. McIntyre J et al (2017) Comparison of health communication channels for reaching Hispanics about biobanking: a pilot trial. J Cancer Educ:1–9

  28. Wells KJ, McIntyre J, Gonzalez LE, Lee JH, Fisher KJ, Jacobsen PB, Meade C, Muñoz-Antonia T, Quinn GP (2013) Feasibility trial of a Spanish-language multimedia educational intervention. Clin Trials 10(5):767–774

    Article  PubMed  PubMed Central  Google Scholar 

  29. Riegman PH, Morente MM, Betsou F, de Blasio P, Geary P, Marble Arch International Working Group on Biobanking for Biomedical Research (2008) Biobanking for better healthcare. Mol Oncol 2(3):213–222

    Article  PubMed  PubMed Central  Google Scholar 

  30. The Women’s Health Initiative Study Group (1998) Design of the women’s health initiative clinical trial and observational study. Control Clin Trials 19(1):61–109

    Article  Google Scholar 

  31. Zhu W, Qin W, Atasoy U, Sauter ER (2009) Circulating microRNAs in breast cancer and healthy subjects. BMC Res Notes 2(1):89

    Article  PubMed  PubMed Central  Google Scholar 

  32. Hylla S, Gostner A, Dusel G, Anger H, Bartram HP, Christl SU, Kasper H, Scheppach W (1998) Effects of resistant starch on the colon in healthy volunteers: possible implications for cancer prevention. Am J Clin Nutr 67(1):136–142

    Article  CAS  PubMed  Google Scholar 

  33. Hébert JR et al (2015) Community-based participatory research adds value to the National Cancer Institute’s research portfolio. Prog Community Health Partnersh 9:1

    Article  PubMed  PubMed Central  Google Scholar 

  34. Trevino-Whitaker R et al (2013) Clinical trials outreach for Latinos: program replication manual. Institute for Health Promotion Research. University of Texas Health Science Center at San Antonio

  35. Treviño-Whitaker RA et al (2015) Abstract A39: GMaP Region 4 clinical trials outreach for Latinos. AACR

  36. Meade CD et al (2015) Introducing biospecimen science to communities: tools from two cities. Prog Community Health Partnersh 9(Suppl):51

    Article  PubMed  PubMed Central  Google Scholar 

  37. Bartholomew-Eldredge LK et al (2016) Planning health promotion programs: an intervention mapping approach. Jossey-Bass, San Francisco

    Google Scholar 

  38. Durant RW, Wenzel JA, Scarinci IC, Paterniti DA, Fouad MN, Hurd TC, Martin MY (2014) Perspectives on barriers and facilitators to minority recruitment for clinical trials among cancer center leaders, investigators, research staff, and referring clinicians: enhancing minority participation in clinical trials (EMPaCT). Cancer 120(S7):1097–1105

    Article  PubMed  Google Scholar 

  39. Davila YR, Reifsnider E, Pecina I (2011) Familismo: influence on Hispanic health behaviors. Appl Nurs Res 24(4):e67–e72

    Article  PubMed  Google Scholar 

  40. Young J (2009) Clinical pediatrics in the Mexican immigrant community. Contemp Pediatr 26(4):58–64

    Google Scholar 

  41. Rhodes SD, Foley KL, Zometa CS, Bloom FR (2007) Lay health advisor interventions among Hispanics/Latinos: a qualitative systematic review. Am J Prev Med 33(5):418–427

    Article  PubMed  Google Scholar 

  42. Rivera Y et al (2016) When a common language is not enough: transcreating cancer 101 for communities in Puerto Rico. J Cancer Educ 31(4):776–783

    Article  CAS  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

The authors thank the promotoras from Prosalud for their valuable assistance in recruiting participants and delivering the intervention. The authors also acknowledge using materials on biobanking and clinical trials, specifically for Hispanics, from the University of Texas Health Science Center at San Antonio and Moffitt Cancer Center.

Funding

The project received funding from the Center of Clinical and Translational Sciences, which is funded mainly by the National Center for Advancing Translational Sciences, Centers for Translational Science Award (UL1 TR000371), the UTHealth School of Public Health Cancer Education, Career Development Program through a National Cancer Institute/NIH grant (R25CA57712), and partial funding from the Center for Health Promotion and Prevention Research. This work was also supported by the Duncan Family Institute for Cancer Prevention and Risk Assessment.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to M. Lizette Rangel.

Ethics declarations

The University of Texas Health Science Center’s Institutional Review Board approved the study.

Disclaimer

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Rangel, M.L., Heredia, N.I., Reininger, B. et al. Educating Hispanics About Clinical Trials and Biobanking. J Canc Educ 34, 1112–1119 (2019). https://doi.org/10.1007/s13187-018-1417-6

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s13187-018-1417-6

Keywords

Navigation