Consent administrator training to reduce disparities in research participation

Journal of Nursing Scholarship

Volumn 41, Issue 1, 2009, Pages 95-103

  Larson, Elaine L ^a,b,e   Cohn, Elizabeth Gross ^c   Meyer, Dodi D ^d   Boden Albala, Bernadette ^b,d  

^a Och Spine at New York Presbyterian Hospitals   (United States)

^b School of Nursing ^*  (United States)

^c ADELPHI UNIVERSITY   (United States)

^d NONE   (United States)

^e NewYork Presbyterian Hospital   (United States)

Author keywords

Disparities; Informed consent; IRB; Research ethics

Indexed keywords

ARTICLE; DEVELOPING COUNTRY; HUMAN; INTERPERSONAL COMMUNICATION; NURSE; NURSE PATIENT RELATIONSHIP; NURSING RESEARCH; STANDARD; STATISTICS; TEACHING;

COMMUNICATION; DEVELOPING COUNTRIES; HUMANS; NURSE-PATIENT RELATIONS; NURSES; NURSING RESEARCH; TEACHING;

EID: 62749148313     PISSN: 15276546     EISSN: 15475069     Source Type: Journal    
DOI: 10.1111/j.1547-5069.2009.01256.x     Document Type: Article

References (58)

1. Abreu, J.M. (1999). Conscious and nonconscious African American stereotypes: Impact on first impression and diagnostic ratings by therapists. Journal of Consulting and Clinical Psychology, 67, 387 393.
2. Agre, P., Rapkin, B. (2003). Improving informed consent: A comparison of four consent tools. IRB, 25 (6 1 7.
3. Ard, J.D., Durant, R.W., Edwards, L.C., Svetkey, L.P. (2005). Perceptions of African-American culture and implications for clinical trial design. Ethnicity and Disease, 15, 292 299.
4. Arnsberger, P., Fox, P., Ryder, P., Nussey, B., Zhang, X., Otero-Sabogal, R. (2006). Timely follow-up among multicultural women with abnormal mammograms. American Journal of Health Behavior, 30, 51 61.
5. Barrett, R. (2005). Quality of informed consent: Measuring understanding among participants in oncology clinical trials. Oncology Nursing Forum, 32 (4 751 755.
6. Branson, R.D., Davis, K., Jr., Butler, K.L. (2007). African Americans' participation in clinical research: Importance, barriers, and solutions. American Journal of Surgery, 193, 32 39 discussion 40.
7. Burman, W., Breese, P., Weis, S., Bock, N., Bernardo, J., Vernon, A. (2003). The effects of local review on informed consent documents from a multicenter clinical trials consortium. Controlled Clinical Trials, 24, 245 255.
8. CenterWatch 2007). Retrieved May, 30, 2007, from http://www.centerwatch. com/
9. Cohn, E., Larson, E. (2007). Informed consent in clinical research: Participant comprehension and interventions to improve comprehension. Journal of Nursing Scholarship, 39, 273 280.
10. Coyle, N., Sculco, L. (2003). Communication and the patient/physician relationship: A phenomenological inquiry. Journal of Supportive Oncology, 1, 206 215.
11. Darrow, W.W., Montanea, J.E., Fernandez, P.B., Zucker, U.F., Stephens, D.P., Gladwin, H. (2004). Eliminating disparities in HIV disease: Community mobilization to prevent HIV transmission among Black and Hispanic young adults in Broward County, Florida. Ethnicity and Disease, 14 (3, Suppl. 1 S108 S116.
12. Dennison, C.R., Peer, N., Steyn, K., Levitt, N.S., Hill, M.N. (2007). Determinants of hypertension care and control among peri-urban Black South Africans: The HiHi study. Ethnicity and Disease, 17, 484 491.
13. Drivsholm, T., Eplov, L.F., Davidsen, M., Jorgensen, T., Ibsen, H., Hollnagel, H., et al 2006). Representativeness in population-based studies: A detailed description of non-response in a Danish cohort study. Scandinavian Journal of Public Health, 34, 623 631.
14. Eichner, J., Dullabh, P. (2007). Accessible health information technology (IT) for populations with limited literacy: A guide for developers and purchasers of health IT. Washington DC : Agency for Healthcare Research and Quality.
15. Farmer, D.F., Jackson, S.A., Camacho, F., Hall, M.A. (2007). Attitudes of African American and low socioeconomic status white women toward medical research. Journal of Health Care for the Poor and Underserved, 18, 85 99.
16. Flory, J., Emanuel, E. (2004). Interventions to improve research participants' understanding in informed consent for research: A systematic review. JAMA, 292, 1593 1601.
17. Godolphin, W. (2003). The role of risk communication in shared decision making. British Medical Journal, 327, 692 693.
18. Green, L., Kreuter, M. (2005). Health promotion planning: An educational and ecological approach (2nd ed.). Columbus, OH : McGraw-Hill.
19. Hansson, M.G., Kihlbom, U., Tuvemo, T., Olsen, L.A., Rodriguez, A. (2007). Ethics takes time, but not that long. BMC Medical Ethics, 8, 6.
20. Henderson, G.E., Easter, M.M., Zimmer, C., King, N.M., Davis, A.M., Rothschild, B.B., et al 2006). Therapeutic misconception in early phase gene transfer trials. Social Science Medicine, 62, 239 253.
21. Jackson, R., Chambless, L.E., Yang, K., Byrne, T., Watson, R., Folsom, A., et al 1996). Differences between respondents and nonrespondents in a multicenter community-based study vary by gender ethnicity. Journal of Clinical Epidemiology, 49, 1441 1446.
22. Jandorf, L., Fatone, A., Borker, P.V., Levin, M., Esmond, W.A., Brenner, B., et al 2006). Creating alliances to improve cancer prevention and detection among urban medically underserved minority groups. Cancer, 107 (8 2043 2051.
23. Joffe, S., Cook, E.F., Cleary, P.D., Clark, J.W., Weeks, J.C. (2001). Quality of informed consent in cancer clinical trials: A cross-sectional survey. Lancet, 358, 1772 1777.
24. Kass, N.E., Sugarman, J., Faden, R., Schoch-Spana, M. (1996). Trust, the fragile foundation of contemporary biomedical research. Hastings Center Reports, 26 (5 25 29.
25. Katz, R.V., Kegeles, S.S., Kressin, N.R., Green, B.L., Wang, M.Q., James, S.A., et al 2006). The Tuskegee Legacy Project: Willingness of minorities to participate in biomedical research. Journal of Health Care for the Poor and Underserved, 17, 698 715.
26. Keith-Spiegel, P., Koocher, G.P. (2005). The IRB paradox: Could the protectors also encourage deceit? Ethics and Behavior, 15, 339 349.
27. Klamen, D., Williams, R. (2006). Using standardized clinical encounters to assess physician communication. In D. Stern (Ed. Measuring medical professionalism (pp. 53 74). New York : Oxford University Press.
28. Larson, E., Bratts, T., Zwanziger, J., Stone, P. (2004). A survey of IRB process in 68 U.S. hospitals. Journal of Nursing Scholarship, 36, 260 264.
29. Leonard, M., Graham, S., Bonacum, D. (2004). The human factor: The critical importance of effective teamwork and communication in providing safe care. Health Promotion Practice, 13 (Suppl. 1 i85 i90.
30. Linnan, L.A., Sterba, K.R., Lee, A.M., Bontempi, J.B., Yang, J., Crump, C. (2005). Planning and the professional preparation of health educators: Implications for teaching, research, and practice. Health Promotion Practice, 6, 308 319.
31. Mabunda-Temple, G. (1998). Recruitment of African Americans in AIDS clinical trials: Some recommended strategies. Journal of the Association of Black Nursing Faculty in Higher Education, 9 (3 61 64.
32. Mackillop, W.J., Quirt, C.F. (1997). Measuring the accuracy of prognostic judgments in oncology. Journal of Clinical Epidemiology, 50, 21 29.
33. Makoul, G. (2001). Essential elements of communication in medical encounters: The Kalamazoo consensus statement. Academic Medicine, 76, 390 393.
34. Marshall, P.A., Adebamowo, C.A., Adeyemo, A.A., Ogundiran, T.O., Vekich, M., Strenski, T., et al 2006). Voluntary participation and informed consent to international genetic research. American Journal of Public Health, 96, 1989 1995.
35. 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, 89, 721 727.
36. Moutsiakis, D.L., Chin, P.N. (2007). Why blacks do not take part in HIV vaccine trials. Journal of the National Medical Association, 99, 254 257.
37. Murthy, V.H., Krumholz, H.M., Gross, C.P. (2004). Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA, 291, 2720 2726.
38. Oliffe, J., Thorne, S., Hislop, T.G., Armstrong, E.A. (2007). "Truth telling" and cultural assumptions in an era of informed consent. Family and Community Health, 30, 5 15.
39. Quirt, C.F., Mackillop, W.J., Ginsburg, A.D., Sheldon, L., Brundage, M., Dixon, P., et al 1997). Do doctors know when their patients don't? A survey of doctor-patient communication in lung cancer. Lung Cancer, 18, 1 20.
40. Rathore, S.S., Lenert, L.A., Weinfurt, K.P., Tinoco, A., Taleghani, C.K., Harless, W., et al 2000). The effects of patient sex and race on medical students' ratings of quality of life. American Journal of Medicine, 108, 561 566.
41. Rico-Villademoros, F., Hernando, T., Sanz, J.L., Lopez-Alonso, A., Salamanca, O., Camps, C., et al 2004). The role of the clinical research coordinator - data manager - in oncology clinical trials. BMC Medical Research Methodology, 4, 6.
42. Rogers, E.S., Wallace, L.S., Weiss, B.D. (2006). Misperceptions of medical understanding in low-literacy patients: Implications for cancer prevention. Cancer Control, 13, 225 229.
43. Schofield, P., Carey, M., Bonevski, B., Sanson-Fisher, R. (2006). Barriers to the provision of evidence-based psychosocial care in oncology. Psychooncology, 15, 863 872.
44. Schwartzberg, J.G., Cowett, A., VanGeest, J., Wolf, M.S. (2007). Communication techniques for patients with low health literacy: A survey of physicians, nurses, and pharmacists. American Journal of Health Behavior, 31 (Suppl. 1 S96 S104.
45. Sengupta, S., Strauss, R.P., DeVellis, R., Quinn, S.C., DeVellis, B., Ware, W.B. (2000). Factors affecting African-American participation in AIDS research. Journal of Acquired Immune Deficiency Syndrome, 24, 275 284.
46. Simon, C.M., Kodish, E.D. (2005). Step into my zapatos, doc: Understanding and reducing communication disparities in the multicultural informed consent setting. Perspectives in Biology and Medicine, 48 (Suppl. 1 S123 S138.
47. Sinatra, G., Pintrich, P. (Eds. 2003). Intentional conceptual change. Mahwah, NY : Lawrence Erlbaum Associates.
48. Smedley, B., Stith, A., Nelson, A. (Eds. 2003). Unequal Treatment: Confronting racial and ethnic disparities in health care. Washington, DC : National Academies Press.
49. Smith, Y.R., Johnson, A.M., Newman, L.A., Greene, A., Johnson, T.R., Rogers, J.L. (2007). Perceptions of clinical research participation among African American women. Journal of Women's Health, 16, 423 428.
50. Sugarman, J., Kass, N.E., Goodman, S.N., Perentesis, P., Fernandes, P., Faden, R.R. (1998). What patients say about medical research. IRB, 20 (4 1 7.
51. Sugarman, J., Lavori, P.W., Boeger, M., Cain, C., Edsond, R., Morrison, V., et al 2005). Evaluating the quality of informed consent. Clinical Trials, 2, 34 41.
52. Thorne, S., Hislop, T.G., Kuo, M., Armstrong, E.A. (2006). Hope and probability: Patient perspectives of the meaning of numerical information in cancer communication. Qualitative Health Research, 16, 318 336.
53. Verastegui, E.L. (2006). Consenting of the vulnerable: The informed consent procedure in advanced cancer patients in Mexico. BMC Medical Ethics, 7 (1 E13.
54. Verheggen, F.W., Jonkers, R., Kok, G. (1996). Patients' perceptions on informed consent and the quality of information disclosure in clinical trials. Patient Education and Counseling, 29, 137 153.
55. Verheggen, F.W., vanWijmen, F.C. (1996). Informed consent in clinical trials. Health Policy, 36, 131 153.
56. Weisse, C.S., Sorum, P.C., Dominguez, R.E. (2003). The influence of gender and race on physicians' pain management decisions. Journal of Pain, 4 (9 505 510.
57. Wilson-Stronks, A., Lee, K., Cordero, C., Kopp, A., Galvez, E. (2008). One size does not fit all: Meeting the health care needs of diverse populations. Oakbrook Terrace, IL : The Joint Commission.
58. Yeo, M., Berzins, S., Addington, D. (2007). Development of an early psychosis public education program using the PRECEDE PROCEED model. Health Education Research, 22 (5 639 647.