An examination of community members', researchers' and health professionals' perceptions of barriers to minority participation in medical research: An application of concept mapping

Ethnicity and Health

Volumn 12, Issue 5, 2007, Pages 521-539

  Robinson, JaMuir M ^a,c   Trochim, William M K ^b  

^a NATIONAL CANCER INSTITUTE   (United States)

^b Department of Obstetrics Gynecology   (United States)

^c MSC 8334 ^*  (United States)

Author keywords

Clinical Trials; Concept Mapping; Medical Research; Minority Populations; Recruitment

Indexed keywords

DISEASE INCIDENCE; ETHNICITY; HEALTH WORKER; MINORITY GROUP; MITIGATION; PERCEPTION; RESEARCH WORK;

ARTICLE; COMMUNITY; CONCEPT MAPPING; HEALTH CARE PERSONNEL; HUMAN; MEDICAL RESEARCH; MINORITY GROUP; PATIENT PARTICIPATION; REFUSAL TO PARTICIPATE;

ATTITUDE OF HEALTH PERSONNEL; CLINICAL TRIALS AS TOPIC; ETHNIC GROUPS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MINORITY GROUPS; PATIENT SELECTION; PREJUDICE; RESEARCH PERSONNEL; RESIDENCE CHARACTERISTICS; SOCIAL CLASS; SOCIAL ISOLATION; SOCIAL JUSTICE; SOCIAL PERCEPTION; UNITED STATES;

NORTH AMERICA; UNITED STATES;

EID: 35848960156     PISSN: 13557858     EISSN: 14653419     Source Type: Journal    
DOI: 10.1080/13557850701616987     Document Type: Article

References (36)

1. Adams-Campbell, L. L., Ahaghotu, C., Gaskins, M., Dawkins, F. W., Smoot, D., Polk, O. D., Gooding, R. & Dewitty, R. L. (2004) 'Enrollment of African Americans onto clinical treatment trials: study design barriers', Journal of Clinical Oncology, vol. 22, pp. 730-734.
2. Caban, C. E. (1995) 'Hispanic research: implications of the National Institutes of Health guidelines on inclusion of women and minorities in clinical research', Journal of the National Cancer Institute Monograph, vol. 18, pp. 165-169.
3. Center to Reduce Cancer Health Disparities (2006) 'Program information'. Available at: http://crchd.cancer.gov/spn/program-information.html (accessed 22 February 2007).
4. Centers for Disease Control and Prevention (2005) 'Health disparities experienced by Black or African Americans - United States', Morbidity and Mortality Weekly Report, vol. 54, pp. 1-3.
5. Chu, K. C. & Jackson, F. E. (2004) 'The Special Populations Networks for cancer awareness research training', Pacific Health Dialog, vol. 11, pp. 222-224.
6. Corbie-Smith, G., St. George, D. M, Moody-Ayers, S. & Ransohoff, D. F. (2003) 'Adequacy of reporting race/ethnicity in clinical trials in areas of health disparities', Journal of Clinical Epidemiology, vol. 56, pp. 416-420.
7. Coxon, A. P. M. (1999) Sorting Data: Collection and Analysis (Sage University papers on Quantitative Applications in the Social Sciences, 07-127), Sage Publications, Thousand Oaks, CA.
8. Davison, M. L. (1983) Multidimensional Scaling, John Wiley and Sons, New York.
9. Du, W., Gadgeel, S. M. & Simon, M. S. (2006) 'Predictors on enrollment in lung cancer clinical trials', Cancer, vol. 106, pp. 420-425.
10. Everitt, B. (1980) Cluster Analysis, 2nd edn, Halsted Press, New York.
11. Giuliano, A. R., Mokuau, N., Hughes, C., Tortolero-Luna, G., Risendal, B., Ho, R. C. S., McCaskill-Stevens, W. & Prewitt, T. E. (2000) 'Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors', Annals of Epidemiology, vol. 10 (8 Suppl), pp. S22-34.
12. Goldberg, K. B. & Godlberg, P. (1996) 'Minority accrual low in prevention trials: NCI plans programs to boost enrollment', Cancer Letter, vol. 22, pp. 1-4.
13. Hair, J. F., Anderson, R. E., Tatham, R. L. & Black, W. C. (1998) Multivariate Data Analysis, 5th edn, Prentice Hall, Upper Saddle River, NJ.
14. Holcombe, R. F., Jacobson, J., Li, A. & Moinpour, C. M. (1998) 'Inclusion of Black Americans in clinical trials: the Louisiana State University Medical Center Experience', American Journal of Clinical Oncology, vol. 22, pp. 18-21.
15. Hudson, S. V., Momperousse, D. & Leventhal, H. (2005) 'Physician perspectives on cancer clinical trials and barriers to minority recruitment', Cancer Control, Suppl. 2, pp. 93-96.
16. Kressin, N. R., Meterko, M. & Wilson, N. J. (2000) 'Racial disparities in participation in biomedical research', Journal of the National Medical Association, vol. 92, no. 2, pp. 62-69.
17. Kruskal, J. B. & Wish, M. (1978) Multidimensional Scaling, Sage Publications, Beverly Hills, CA.
18. Millon-Underwood, S., Sanders, E. & Davis, M. (1993) 'Determinants of participation in state-of-the-art cancer prevention, early detection/screening, and treatment trials among African-Americans', Cancer Nursing, vol. 16, pp. 25-33.
19. Mouton, C. P., Harris, S., Rovi, S., Solorzano, P. & Johnson, M. S. (1997) 'Barriers to black women's participation in cancer clinical trials', Journal of the National Medical Association, vol. 89, no. 11, pp. 721-727.
20. Murthy, V. H., Krumholz, H. M. & Gross, C. P. (2004) 'Participation in cancer clinical trials: race-, sex-, and age-based disparities', Journal of the American Medical Association, vol. 291, pp. 2720-2726.
21. National Institutes of Health (1994) 'NIH guidelines on the inclusion of women and minorities as subjects in clinical research', Federal Register, vol. 59, pp. 14508-14513.
22. Office of Management and Budget (1997) 'Revisions to the standards for the classification of federal data on race and ethnicity'. Available at: http://www.whitehouse.gov/ombfedreg/1997standards.html (accessed 13 January 2007).
23. Osborn, A. F. (1948) Your Creative Power, Scribner, New York.
24. Roberson, N. L. (1994) 'Clinical trial participation. Viewpoints from racial/ethnic groups', Cancer, vol. 74 (9 Suppl), pp. 2687-2691.
25. Shavers, V. L., Lynch, C. F. & Burmeister, L. F. (2002) 'Racial differences in factors that influence the willingness to participate in medical research studies', Annals of Epidemiology, vol. 12, pp. 248-256.
26. Svensson, C. K. (1989) 'Representation of American blacks in clinical trials of new drugs', Journal of the American Medical Association, vol. 261, no. 2, pp. 263-265.
27. Swanson, G. M. & Bailar, J. C. (2002) 'Selection and description of cancer clinical trials participants - science or happenstance?' Cancer, vol. 95, pp. 950-959.
28. Tejeda, H. A., Green, S. B., Trimble, E. L., Ford, L., High, J. L., Ungerleider, R. S., Friedman, M. A. & Brawley, O. W. (1996) 'Representation of African-Americans, Hispanics, and whites in National Cancer Institute cancer treatment trials', Journal of the National Cancer Institute, vol. 88, no. 12, pp. 812-816.
29. Trochim, W. M. (1985) 'Pattern matching, validity and conceptualization in program evaluation', Evaluation Review, vol. 95, pp. 575-604.
30. Trochim, W. M. (1989) 'An introduction to concept mapping for planning and evaluation', Evaluation and Program Planning, vol. 12, no. 1, pp. 1-16.
31. Trochim, W. M. (1993) 'Reliability of concept mapping'. Paper presented at the Annual Conference of the American Evaluation Association, Dallas, Texas.
32. Trochim, W. M. & Kane, M. (2005) 'Concept mapping: an introduction to structured conceptualization in healthcare', International Journal for Quality in Health Care, vol. 17, no. 3, pp. 187-191.
33. United States Department of Health and Human Services (2000) Healthy People 2010 (conference edition, 2 vol), USDHHS, Washington, DC.
34. Weijer, C. & Crouch, R. A. (1999) 'Why should we include women and minorities in randomized controlled trials?', Journal of Clinical Ethics, vol. 10, no. 2, pp. 100-106.
35. Weller, S. C. & Romney, A. K. (1988) Systematic Data Collection, Sage Publications, Newbury Park, CA.
36. Wendler, D., Kington, R., Madans, J., Van Wye, G., Christ-Schmidt, H., Pratt, L. A., Brawley, O. W., Goss, C. P. & Emanuel, E. (2006) 'Are racial and ethnic minorities less willing to participate in medical research?' PLoS MEd, vol. 3, no. 2, pp. e19-29.