Skip to main content

Advertisement

SpringerLink
Log in

Five Principles for Effective Cancer Clinical Trial Education Within the Community Setting

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

Abstract

Participation in cancer clinical trials (CCTs) is a key measure for delivery of quality cancer care. Yet, adult cancer patient participation in CCTs remains at about 3 %, and participation rates are even lower among ethnic and racial minorities and the medically underserved. Social justice demands better representation of all populations in CCTs to ensure equal access to clinical trials and to ensure greater generalizability of trial results. Using a conceptual framework, this paper outlines a set of guiding principles deemed essential for effective and ethical implementation of community-based education in CCTs. Also described are examples of interventions related to this framework that have been used to overcome key barriers to trial enrollment among underserved populations. Application of the key principles, combined with ongoing engagement of cancer care institutions, suggests promise in enhancing trial participation.

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

Access this article

Log in via an institution

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

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Notes

  1. As described in the Belmont Report,: justice “means the sense of ‘fairness in distribution’ or ‘what is deserved.’” An injustice occurs when some benefit to which a person is entitled is denied without good reason or when some burden is imposed unduly. “Questions of justice have long been associated with social practices such as punishment, taxation and political representation…and have not generally been associated with scientific research. However, conceptions of justice are relevant to research involving human subjects” (http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.htm).

References

  1. Commission on Cancer. Cancer program standards 2012, version 1.2.1: ensuring patient-centered care. Chicago (IL): American College of Surgeons. http://www.facs.org/cancer/coc/programstandards2012.html Accessed Jan 1 2014.

  2. Nass SJ, Moses HL, Mendelsohn J (eds) (2010) National Cancer Clinical Trials System for the 21st Century: reinvigorating the NCI Cooperative Group Program. Committee on Cancer Clinical Trials and the NCI Cooperative Group Program. Institute of Medicine of the National Academies.

  3. Brawley OW (2004) The study of accrual to clinical trials: can we learn from studying who enters our studies? J Clin Oncol 22:2039–2040

    Article  PubMed  Google Scholar 

  4. Murthy VH, Krumholz HM, Gross CP (2004) Participation in cancer clinical trials: race-, sex-, and age-based disparities. J Am Med Assoc 291:2720–2726

    Article  CAS  Google Scholar 

  5. Stewart JH, Bertoni AG, Staten JL et al (2007) Participation in surgical oncology clinical trials: gender-, race/ethnicity-, and age-based disparities. Ann Surg Oncol 14(12):3328–3334

    Article  PubMed  Google Scholar 

  6. Simon MS, Du W (2004) Factors associated with breast cancer clinical trials participation and enrollment at a large academic medical center. J Clin Oncol 22:2046–2052

    Article  PubMed  Google Scholar 

  7. Galen J, Dohan D (2009) Diversity of participants in clinical trials in an academic medical center: the role of the ‘good study patient? Cancer 115:608–615

    Article  Google Scholar 

  8. Ford JG, Howerton MW, Lai GY et al (2008) Barriers to recruiting underrepresented population to cancer clinical trials: a systematic review. Cancer 112(2):228–242

    Article  PubMed  Google Scholar 

  9. Wendler D, Kington R, Madans J et al (2006) Are racial and ethnic minorities less willing to participate in health research? PLoS Med 3(2):e19, Epub 2005

    Article  PubMed Central  PubMed  Google Scholar 

  10. Ford JG, Howerton MW, Bolen S et al (2005) Knowledge and access to information on recruitment of underrepresented populations to cancer clinical trials. Summary Evidence Report/Technology Assessment. No. 122. AHRQ Publication No. 05-E019-1. Agency for Healthcare Research and Quality, Rockville

    Google Scholar 

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

    Article  PubMed Central  PubMed  Google Scholar 

  12. Ford ME, Wahlquist AE, Ridgeway C et al (2011) Evaluating an intervention to increase cancer knowledge in racially diverse communities in South Carolina. Patient Educ Couns 83:256–260

    Article  PubMed Central  PubMed  Google Scholar 

  13. Ford ME, Havstad SL, Fields ME et al (2008) Effects of baseline comorbidities on cancer screening trial adherence among older African American men. Canc Epidemiol Biomarkers Prev 17:1234–1239, Epub 2008 May 7

    Article  Google Scholar 

  14. Langford A, Resnicow K, An L (2010) Clinical trial awareness among racial/ethnic minorities in HINTS 2007: sociodemographic, attitudinal, and knowledge correlates. J Health Commun Int Perspect 15(Suppl 3):92–101

    Article  Google Scholar 

  15. Corbie-Smith G, Thomas SB, St George DMM (2002) Distrust, race, and research. Arch Intern Med 162:2458–2463

  16. Brown M, Moyer A (2010) Predictors of awareness of clinical trials and feelings about the use of medical information for research in a nationally representative US sample. Ethn Health 15:223–236

    Article  PubMed  Google Scholar 

  17. Wynia MK, Gamble VN (2006) Mistrust among minorities and the trustworthiness of medicine. PLoS Med 3:e244

    Article  PubMed Central  PubMed  Google Scholar 

  18. Lara PN Jr, Paterniti DA, Chiechi C et al (2005) Evaluation of factors affecting awareness of and willingness to participate in cancer clinical trials. J Clin Oncol 23:9282–9289

    Article  PubMed  Google Scholar 

  19. UyBico SJ, Pavel S, Gross CP (2007) Recruiting vulnerable populations into research: a systematic review of recruitment interventions. J Gen Intern Med 22:852–863

    Article  PubMed Central  PubMed  Google Scholar 

  20. Ellis PM, Butow PN, Tattersall MHN et al (2001) Randomized clinical trials in oncology: understanding and attitudes predict willingness to participate. J Clin Oncol 19:3554–3561

    CAS  PubMed  Google Scholar 

  21. Baquet CR, Commiskey P, Mullins CD et al (2006) Recruitment and participation in clinical trials: socio-demographic, rural/urban, and health care access predictors. Cancer Detect Prev 30:24–33

    Article  PubMed Central  PubMed  Google Scholar 

  22. Michaels M, Weiss ES, Guidry JA et al (2012) The promise of community-based advocacy and education efforts for increasing cancer clinical trials accrual. J Cancer Educ 27:67–74

    Article  PubMed  Google Scholar 

  23. Ford M, Wahlquist A, Blake R et al (2012) Assessing an intervention to improve clinical trial perceptions among predominately African-American communities in South Carolina. Prog Community Health Partnerships Res Educ Action 6:249–263

    Article  Google Scholar 

  24. Ford ME, Havstad SL, Vernon SW et al (2006) Enhancing adherence among older African American men enrolled in a longitudinal cancer screening trial. The Gerontologist 46:545–550

    Article  PubMed  Google Scholar 

  25. Ma GX, Tan Y, Blakeney NC, Seals BF, Ma XS, Zhai S, Liu A, Tai Y, Michaels M (2014) The impact of a community-based clinical trial educational intervention among underrepresented Chinese Americans. Cancer Epidemiol Biomarkers Prev 23(3):424–432, Oct 3 Epub 2013

    Article  PubMed  Google Scholar 

  26. Blakeney N, Michaels M, Green M, Richmond A, Long D, Robinson WS, Spicer C, Elliott-Bynum S, Corbie-Smith G (in press) Collaborative development of clinical trials education programs for African-American community-based organizations. J Canc Educ

Download references

Acknowledgments

This paper includes projects with research support from LIVESTRONG, U.S. Department of Defense (DOD) SE VIEW grants W81XWH-11-2-0164 and W81XWH-10-2-0057, DOD Congressionally Directed Medical Research Programs grant W81XWH-09-1-0157, National Institutes of Health 870 (NIH)/National Cancer Institute grant 5P20CA15286-02, NIH/National Institute on Minority Health and Health Disparities grant 5R01MD005892-02, NIH/NCI Center to Reduce Cancer Health Disparities CNP Grant No. U01 CA114629, and National Institute on Minority Health and Health Disparities Grant No. P60-MD000244.

Conflict of Interest

Among the four authors of the article, three have no conflicts of interest. The second author served as an independent contractor for ENACCT and owns a health and wellness service.

Author information

Authors and Affiliations

  1. Education Network to Advance Cancer Clinical Trials, 7625 Wisconsin Avenue, Suite 300, Bethesda, MD, 20814, USA

    Margo Michaels & Natasha Blakeney

  2. Center for Bioethics and Social Sciences in Medicine, University of Michigan, 2800 Plymouth Road, NCRC Building 16, Room 400S-15, Ann Arbor, MI, 48109, USA

    Aisha T. Langford

  3. Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USA

    Marvella E. Ford

  4. Cancer Disparities, Hollings Cancer Center, Medical University of South Carolina, Charleston, SC, USA

    Marvella E. Ford

Authors
  1. Margo Michaels
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Natasha Blakeney
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Aisha T. Langford
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Marvella E. Ford
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Margo Michaels.

Additional information

At the time of writing this manuscript, Aisha Langford was the Director of Community Outreach for the University of Michigan Comprehensive Cancer Center, Ann Arbor, MI.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Michaels, M., Blakeney, N., Langford, A.T. et al. Five Principles for Effective Cancer Clinical Trial Education Within the Community Setting. J Canc Educ 30, 197–203 (2015). https://doi.org/10.1007/s13187-014-0699-6

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s13187-014-0699-6

Keywords

Search

Navigation