Ethnicity and research evaluating health interventions: Issues of science and ethics

Health and Social Research in Multiethnic Societies

Volumn , Issue , 2006, Pages 142-164

  Oakley, Ann ^a  

^a UNIVERSITY OF LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 60449088094     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.4324/9780203969939     Document Type: Chapter

References (129)

1. Ammerman, A., Lindquist, C., Hersey, J. et al.(2001) The Efficacy of Interventions to Modify Dietary Behavior Related to Cancer Risk, Volume I Evidence report and appendices, Rockville, MD: Agency of Healthcare Research and Quality.
2. Anand, S. (1999) 'Using ethnicity as a classification variable in health research: perpetuating the myth of biological determinism, serving socio-political agendas, or making valuable contributions to medical sciences?', Ethnicity and Health, 4: 241-244.
3. Anderson, J.M. (1985) 'Perspectives on the health of immigrant women: a feminist analysis', Advances in Nursing Science, October, 8: 61-76.
4. Anderson, R.T., Aaronson, N.K. and Wilkin, D. (1993) 'Critical review of the international assessments of health-related quality of life', Quality of Life Research, 2: 369-395.
5. Ashcroft, R.E., Chadwick, D.W., Clark, S.R.L. et al.(1997) 'Implications of socio-cultural contexts for the ethics of clinical trials', Health Technology Assessment, 1(9).
6. Atkinson, M., Clark, M., Clay, D. et al.(2001) Systematic Review of Ethnicity and Health Service Access for London, Warwick: Centre for Health Services Studies.
7. Balarajan, R. (1995) 'Ethnicity and variations in the nation's health', Health Trends, 27: 114-119.
8. Bartlett, C., Davey, P., Dieppe, P. et al.(2003) 'Women, older persons and ethnic minorities: factors associated with their inclusion in randomised trials of statins 1990 to 2001', Heart, 89: 327-328.
9. Bayer, A. and Tadd, W. (2000) 'Unjustified exclusion of elderly people from studies submitted to research ethics committee for approval: descriptive study', British Medical Journal, 321: 992-993.
10. Begg, C.B. and Engstrom, P.F. (1987) 'Eligibility and extrapolation in cancer clinical trials', Journal of Clinical Epidemiology, 5: 962-968.
11. Berg, J.A. (1999) 'Gaining access to under-researched populations in women's health research', Health Care for Women International, 20: 237-243.
12. Berge, E. and Sandercock, P. (2002) 'The nuts and bolts of doing a clinical trial', in L. Duley and B. Farrell (eds), Clinical Trials, London: BMJ Publishing.
13. Bhopal, R.S. and Donaldson, L.J. (1988) 'Health education for ethnic minorities: current provision and future directions', Health Education Journal, 47: 137-140.
14. Bhopal, R.S. and Donaldson, L.J. (1998) 'White, European, Western, Caucasian, or what? Inappropriate labelling in research on race, ethnicity and health', American Journal of Public Health, 88(9): 303-7.
15. Bolam, A., Manandar, D.S., Shrestham P. et al.(1998) 'The effects of postnatal health education for mothers on infant care and family planning practices in Nepal: a randomised controlled trial', British Medical Journal, 316: 805-811.
16. Bradley, K.A., Boyd-Wickizier, J., Powell, S.H. and Burman, M.L. (1998) 'Alcohol screening questionnaires in women: a critical review', Journal of the American Medical Association, 280: 166-171.
17. Britton, A., McKee, M., Black, N. et al.(1999) 'Threats to applicability of randomised trials: exclusion and selective participation', Journal of Health Services Research and Policy, 4: 112-121.
18. Brunton, G., Harden, A., Rees, R. et al.(2003) Children and Physical Activity: a systematic review of barriers and facilitators, London: EPPI-Centre, Social Science Research Unit, Institute of Education.
19. Bullinger, M., Alonso, J., Apolone, G. et al.(1998) 'Translating health status questionnaires and evaluating their quality', Journal of Clinical Epidemiology, 51: 913-923.
20. Campbell, H., Boyd, K.M. and Surry, S.A.M. (1997) 'Journals should require routine reporting of consent rates' (letter), British Medical Journal, 315: 247.
21. Chalmers, B. (1981) 'Development of a life event scale for pregnant, white South African women', South African Journal of Psychology, 11: 74-79.
22. Clay, D.L., Mordhorst, M.J. and Lehn, L. (2002) 'Empirically supported treatments in pediatric psychology: where is the diversity?', Journal of Pediatric Psychology, 27: 325-337.
23. Comstock, R.D., Castillo, E.M. and Lindsay, S.P. (2004) 'Four-year review of the use of race and ethnicity in epidemiologic and public health research', American Journal of Epidemiology, 159: 611-619.
24. Coney, S. (1988) The Unfortunate Experiment, Auckland: Penguin Books.
25. Corbie-Smith, G., St George, D.M.M., Moody-Ayers, S. and Ransohoff, D.F. (2003) 'Adequacy of reporting race/ethnicity in clinical trials in areas of health disparities', Journal of Clinical Epidemiology, 56: 416-420.
26. Cotton, P. (1990) 'Is there still too much extrapolation from data on middle-aged white men?', Journal of the American Medical Association, 263: 1049-1050.
27. Cox, J.L., Holden, J. and Sagovsky, R. (1987) 'Detection of postnatal depression: development of the 10-item Edinburgh Postnatal Depression Scale (EPDS)', British Journal of Psychiatry, 150: 782-786.
28. Cullinan, T. (1997) 'Other societies have different concepts of autonomy' (letter), British Medical Journal, 315: 248.
29. Davies, H.T.O., Nutley, S.M. and Smith, P.C. (eds) (2000) What Works? Evidence-based policy and practice in public services, Bristol: The Policy Press.
30. Dieppe, P., Bartlett, C., Davey, P. et al.(2004) 'Balancing benefits and harms: the example of non-steroidal anti-inflammatory drugs', British Medical Journal, 329: 31-34.
31. DiGiuseppi, C., Roberts, I., Wade, A. et al.(2002) 'Incidence of fires and related injuries after giving out free smoke alarms: cluster randomised controlled trial', British Medical Journal, 325: 995-997.
32. Donovan, J., Mills, N., Smith, M. et al.for the Protect Study Group (2002) 'Improving design and conduct of randomised trials by embedding them in qualitative research: ProtecT (prostate testing for cancer and treatment) study', British Medical Journal, 325: 766-770.
33. Edwards, S.J.L., Lilford, R.J., Braunholtz, D.A. et al.(1998) 'Ethical issues in the design and conduct of randomized controlled trials', Health Technology Assessment, 2.
34. Fallowfield, L.J., Jenkins, V., Brennan, C. et al.(1998) 'Attitudes of patients to randomised clinical trials of cancer therapy', European Journal of Cancer, 34: 1554-1559.
35. Featherstone, K. and Donovan, J.L. (1998) 'Random allocation or allocation at random? Patient's perspectives of participation in a randomised controlled trial', British Medical Journal, 317: 1177-1180.
36. Fellowes, D., Wilkinson, S. and Moore, P. (2004) 'Communication skills training for health care professionals working with cancer patients, their families and/or carers' (Cochrane Review), in The Cochrane Library, issue 2. Chichester: John Wiley & Sons.
37. Fischbacher, C.M., Bhopal, R., Patel, S. et al.(2001a) 'Anaemia in Chinese, South Asian, and European populations in Newcastle upon Tyne: cross sectional study', British Medical Journal, 322: 958-959.
38. Fischbacher, C.M., Bhopal, R., Unwin, N. et al.(2001b) 'The performance of the Rose angina questionnaire in South Asian and European origin populations: a comparative study in Newcastle', International Journal of Epidemiology, 54: 786.
39. Frayne, S.M., Burns, R.B., Hardt, E.J. et al.(1996) 'The exclusion of non-English-speaking persons from research', Journal of General Internal Medicine, 11: 39-43.
40. Free, C. and McKee, M. (1998) 'Meeting the needs of black and minority ethnic groups', British Medical Journal, 316: 380.
41. Geiger, H. (1996) 'Race and health care-an American dilemma?', New England Journal of Medicine, 335: 815-816.
42. Goldberg, D. and Williams, P. (1988) A User's Guide to the General Health Questionnaire, Windsor: NFER-Nelson.
43. Goodare, H. and Lockwood, S. (1999) 'Involving patients in clinical research', British Medical Journal, 319: 724-725.
44. Grady, D., Chaput, L. and Kristof, M. (2003) Diagnosis and Treatment of Coronary Heart Disease in Women: a systematic review of evidence on selected topics, Rockville, MD: Agency for Healthcare Research and Quality.
45. Griffiths, C., Foster, C., Barnes, N. et al.(2004) 'Specialist nurse intervention to reduce unscheduled asthma care in a deprived multiethnic area: the east London randomised controlled trial for high risk asthma (ELECTRA)', British Medical Journal, 328: 144-147.
46. Guillemin, F., Bombardier, C. and Beaton, D. (1993) 'Cross-cultural adaptation of healthrelated quality of life measures: literature review and proposed guidelines', Journal of Clinical Epidemiology, 46: 1417-1432.
47. Hall, W.D. (1999) 'Representation of blacks, women, and the very elderly (aged > or = 80)in 28 major randomized clinical trials', Ethnicity and Disease, 9: 333-340.
48. Harden, A., Rees, R. Shepherd, J. et al.(2001) Young People and Mental Health: a systematic review of research on barriers and facilitators, London: EPPI-Centre, Social Science Research Unit, Institute of Education.
49. Helman, C. (1985) Culture, Health and Illness, Bristol: John Wright & Sons.
50. Homer, C. (2000) 'Incorporating cultural diversity in randomised controlled trials in midwifery', Midwifery, 16: 252-259.
51. Hunninghake, D.B., Darby, C.A. and Probstfield, J.L. (1997) 'Recruitment experience in clinical trials: literature summary and annotated bibliography [review]', Controlled Clinical Trials, 8: 6-30.
52. Hunt, S. and Bhopal, R. (2003) 'Self reports in research with non-English speakers', British Medical Journal, 327: 352-353.
53. Hussain-Gambles, M. (2003) 'Ethnic minority under-representation in clinical trials: whose responsibility is it anyway?', Journal of Health Organisation and Management, 17: 138-143.
54. Hussain-Gambles, M. (2004) 'South Asian patient's views and experiences of clinical trial participants', Family Practice, 21(6): 636-642.
55. Hussain-Gambles, M., Atkin, K. and Leese, B. (2004) 'Why ethnic minority groups are underrepresented in clinical trials: a review of the literature', Health & Social Care in the Community, 12(5): 382-388.
56. Jenkins, V. and Fallowfield, L. (2000) 'Reasons for accepting or declining to participate in randomized clinical trials for cancer therapy', British Journal of Cancer, 82: 1783-1788.
57. Johnson, M.R.D. and Szczepura, A. (2003) 'Population's ethnic profile should be recorded in all medical data' (letter), British Medical Journal, 327: 394.
58. Jones, C.P., LaVeist, T.A. and Lillie-Blanton, M. (1991) 'Race in the epidemiologic literature: an examination of the American Journal of Epidemiology, 1921-1990', American Journal of Epidemiology, 134: 1079-1083.
59. Jones, J.H. (1993) Bad Blood: the Tuskegee syphilis experiment, Glencoe, IL: Free Press.
60. Krecic-Shepard, M.E., Park, K., Barnas, C. et al.(2000) 'Race and sex influence clearance of nifedipine: results of a population study', Clinical Pharmacology and Therapeutics, 68: 130-142.
61. Krieger, N. (1992) 'The making of public health data: paradigms, politics and policy', Journal of Public Health Policy, Winter: 412-417.
62. Kunz, R., Vist, G. and Oxman, A.D. (2003) 'Randomisation to protect against selection bias in healthcare trials' (Cochrane Methodological Review), in The Cochrane Library, Issue 1, Oxford: Update Software.
63. Lewis, C.E., George, V., Foaud, M. et al.(1998) 'Recruitment strategies in the women's health trial: feasibility study in minority populations', Controlled Clinical Trials, 19: 461-476.
64. Lloyd, K. (1998) 'Ethnicity, social inequality and mental illness', British Medical Journal, 316: 1763-1770.
65. Loevinsohn, B.P. (1990) 'Health education interventions in developing countries: a methodological review of published articles', International Journal of Epidemiology, 19(4): 788-794.
66. MacArthur, C., Winter, H.R., Bick, D.E. et al.(2003) 'Redesigning postnatal care: a randomised controlled trial of protocol-based midwifery-led care focused on individual women's physical and psychological health needs', Health Technology Assessment, 7(37).
67. Macdonald, G. (1997) 'Social work: beyond control?', in A. Maynard and I. Chalmers (eds), Non-random Reflections on Health Services Research, London: BMJ Publishing Group: 122-146.
68. Mason, S., Hussain-Gambles, M., Leese, B. et al.(2003) 'Representation of South Asian people in randomised clinical trials: analysis of trials data', British Medical Journal, 326: 1244-1245.
69. Mastroianni, A.C., Faden, R. and Federman, D. (eds) (1994) Women and Health Research: ethical and legal issues of including women in clinical studies, vol. 1, Washington, DC: National Academy Press.
70. McCaskill-Stevens, W., Pinto, H., Marcus, A.C. et al.(1999) 'Recruiting minority cancer patients into cancer clinical trials: a pilot project involving the Eastern Cooperative Oncology Group and the National Medical Association', Journal of Clinical Oncology, 17: 1029.
71. McPherson, K., Harwood, M. and McNaughton, H.K. (2003) 'Ethnicity, equity and quality: lessons from New Zealand', British Medical Journal, 327: 443-444.
72. Meinert, C.L. (1999) 'Redesign of trials under different enrolment mixes', Statistics in Medicine, 18: 241-251.
73. Michie, S. and Marteau, T. (1999) 'Non-response bias in prospective studies of patients and health care professionals', International Journal of Social Research Methodology, 2: 203-212.
74. Modood, T., Berthoud, R., Lakey, J. et al.(1997) Ethnic Minorities in Britain: diversity and disadvantage, PSI Report 843, London: Policy Studies Institute.
75. Moher, D., Schulz, K.F. and Altman, D.G. for the CONSORT Group (2001) 'The CONSORT statement: revised recommendations for improving the quality of reports of parallel-group randomised trials', The Lancet, 357: 1191-1194.
76. Moher, D., Pham, B., Lawson, M.L. and Klassen, T.P. (2003) 'The inclusion of reports of randomised trials published in languages other than English in systematic reviews', Health Technology Assessment, 7(41).
77. Nazroo, J. (1997) The Health of Britain's Ethnic Minorities, London: Policy Studies Institute.
78. Ness, R.B., Nelson, D.B., Kumanyika, S.K. and Grisso, J.A. (1997) 'Evaluating minority recruitment into clinical studies: how good are the data?', Annals of Epidemiology, 7: 471-478.
79. Oakley, A. (2005) 'Design and analysis of social intervention studies in health research', in A. Bowling and S. Ebrahim (eds) Handbook of Health Research, Maidenhead: Open University Press, 246-265.
80. Oakley, A., Peersman, G. and Oliver, S. (1998) 'Social characteristics of participants in health promotion effectiveness research: trial and error', Education for Health, 11: 305-317.
81. Oakley, A., Rajan, L. and Grant, A. (1990) 'Social support and pregnancy outcome: report of a randomised controlled trial', British Journal of Obstetrics and Gynaecology, 97: 155-162.
82. Oakley, A., Wiggins, M., Turner, H. et al.(2003) 'Including culturally diverse samples in health research: a case study of an urban trial of social support', Ethnicity and Health, 8: 29-39.
83. Oakley, A., Stephenson, J., Forrest, S. and Monteiro, H. (2004) 'Evaluating processes: a case study of a randomised controlled trial of sex education', Evaluation, 10: 440-462.
84. Oliver, S., Rajan, L., Turner, H. and Oakley, A. (1995) A Pilot study of 'Informed Choice'Leaflets on Positions in Labour and Routine Ultrasound, London: Social Science Research Unit, Institute of Education.
85. Parker, G., Bhakta, P., Lovett, C.A. et al.(2002) 'A systematic review of the costs and effectiveness of different models of paediatric home care', Health Technology Assessment, 6(35).
86. Pasick, R.J., Steward, S.L., Bird, J.A. and D'Onofrio, C.N. (2001) 'Quality of data in multiethnic health surveys', Public Health Reports 2001, Supplement 1, 116: 223-243.
87. Pearce, N.B., Foliaki, S., Sporle, A. and Cunningham, C. (2004) 'Genetics, race, ethnicity and health', British Medical Journal, 328: 1070-1072.
88. Peersman, G. (1996) A Descriptive Mapping of Health Promotion Studies in Young People, London: Social Science Research Unit, Institute of Education.
89. Pless, B. (2003) 'Smoke detectors and house fires' (editorial), British Medical Journal, 325: 979-980.
90. Preloran, H.M., Browner, C.H. and Lieber, E. (2001) 'Strategies for motivating Latino couples'participation in qualitative health research and their effects on sample construction', American Journal of Public Health, 91: 1832-1841.
91. Prescott, R.F., Counsell, C.E., Gillespie, W.J. et al.(1999) 'Factors that limit the quality, number and progress of randomised controlled trials', Health Technology Assessment, 3(20).
92. Qureshi, T., Berridge, D. and Wenman, H. (2004) Where to Turn? Family support for South Asian communities, London: National Children's Bureau.
93. Rack, P. (1991) Race, Culture and Mental Disorder, London: Tavistock/Routledge.
94. Ramasubbu, K., Gurm, H. and Litaker, D. (2001) 'Gender bias in clinical trials: do double standards still apply?', Journal of Women's Health and Gender Based Medicine, 10: 757-764.
95. Rathore, S.S. and Krumholz, H.M. (2003) 'Race, ethnic group, and clinical research', British Medical Journal, 327: 763-764.
96. Rees, R., Harden, A., Shepherd, J. et al.(2001) Young People and Physical Activity: a systematic review of research on barriers and facilitators, London: EPPI-Centre, Social Science Research Unit, Institute of Education.
97. Roberts, H., Liabo, K., Lucas, P. et al.(2004) 'Mentoring to reduce antisocial behaviour in childhood', British Medical Journal, 328: 512-514.
98. Robinson, D., Woerner, M.G., Pollack, S. and Lerner, G. (1996) 'Subject selection biases in clinical trials: data from a multicenter schizophrenia treatment study', Journal of Clinical Psychopharmacology, 16: 170-176.
99. Ross, D.A. and Wight, D. (2002) 'The role of randomized controlled trials in assessing sexual health interventions', in J. Stephenson, J. Imrie and C. Bonell (eds), Effective Sexual Health Interventions: issues in experimental evaluation, Oxford: Oxford University Press.
100. Rowland, D., DiGiuseppi, C., Roberts, I. et al.(2002) 'Prevalence of working smoke alarms in local authority inner city housing: randomised controlled trial', British Medical Journal, 325: 998-1001.
101. Rudat, K. (1994) Black and Minority Ethnic Groups in England: Health and Lifestyles, London: Health Education Authority.
102. Sakala, C., Gyte, G., Henderson, S. et al.(2001) 'Consumer-professional partnership to improve research: the experience of the Cochrane Collaboration's Pregnancy and Childbirth Group', Birth, 28: 133-137.
103. Sehmi, K.S. (2003) 'Lack of good data results in ineffective health policy for South Asians' (letter), British Medical Journal, 327: 394.
104. Senior, P. and Bhopal, R. (1994) 'Ethnicity as a variable in epidemiological research', British Medical Journal, 309: 327-330.
105. Sheikh, A., Netuveli, G., Kai, J. and Panesar, S.S. (2004) 'Comparison of reporting of ethnicity in US and European randomised controlled trials', British Medical Journal, 329: 87-88.
106. Shepherd, J., Harden, A., Rees, R. et al.(2001) Young People and Healthy Eating: a systematic review of research on barriers and facilitators, London: EPPI-Centre, Social Science Research Unit, Institute of Education.
107. Silagy, C.A. and Jewell, D. (1994) 'Review of 39 years of randomized controlled trials in the British Journal of General Practice', British Journal of General Practice, 44: 359-363.
108. Simmons, D., Fleming, C., Cameron, M. and Leakehe, L. (1996) 'A pilot diabetes awareness and exercise programme in a multiethnic workforce', New Zealand Medical Journal, 109: 373-376.
109. Singh, G. and Johnson, M.R.D. (1998) 'Research with ethnic minority groups in health and social welfare', in C. Williams, H. Soydan and M.R.D. Johnson (eds), Social Work and Minorities: European perspectives, London: Routledge.
110. Smaje, C. (1995) Health, 'Race' and Ethnicity: making sense of the evidence, London: King's Fund Institute.
111. Smaje, C. and LeGrand, J. (1995) 'Ethnicity, equity and the use of health services in the British National Health Service', Social Science and Medicine, 45: 485-496.
112. Staniszewska, S., Ahmed, L. and Jenkinson, C. (1999) 'The conceptual validity and appropriateness of using health-related quality of life measures with minority ethnic groups', Ethnicity and Health, 4: 51-63.
113. Stewart, A.L. and Napoles-Springer, A. (2000) 'Health-related quality of life assessments in diverse population groups in the United States', Medical Care, 38(9) (suppl): II102-124.
114. Stone, V.E., Mauch, M.Y. and Steger, K.A. (1998) 'Provider attitudes regarding participation of women and persons of color in AIDS clinical trials', Journal of AIDS and Human Retrovirology, 19: 245-253.
115. Swanson, G.M. and Ward, A.J. (1995) 'Recruiting minorities into clinical trials: towards a participant-friendly system', Journal of the National Cancer Institute, 87: 1747-1759.
116. Thomas, G. and Pring, R. (eds) (2004) Evidence-based Practice in Education, Maidenhead: Open University Press.
117. Thomas, J., Harden, A., Oakley, A. et al.(2004) 'Integrating qualitative research with trials in systematic reviews', British Medical Journal, 328: 1010-1012.
118. Thomas, J., Sutcliffe, K., Harden, A. et al.(2003) Children and Healthy Eating: a systematic review of barriers and facilitators, London: EPPI-Centre, Social Science Research Unit, Institute of Education.
119. Thompson, E.E., Neighbors, H.W., Munday, C. and Jackson, J.D. (1996) 'Recruitment and retention of African American patients for clinical research: an exploration of response rates in an urban psychiatric hospital', Journal of Consulting and Clinical Psychology, 64: 861-867.
120. Tsikata, S., Robinson, V., Petticrew, M. et al.(2003) 'Do Cochrane systematic reviews contain useful information about health equity?' [abstract], XI Cochrane Colloquium: Evidence, Health Care and Culture, 26-31 October, Barcelona, Spain: p. 77.
121. Turner, H. (1996) Informed Choice in Pregnancy and Childbirth: what this means for black and ethnic minority women, London: Social Science Research Unit, Institute of Education.
122. Twinn, S. (1997) 'An exploratory study examining the influence of translation on the validity and reliability of qualitative data in nursing research', Journal of Advanced Nursing, 26: 416-423.
123. Wald, D.S. (2004) 'Bureaucracy of ethics applications', British Medical Journal, 329: 282-284.
124. Waldenström, U. and Turnbull, D. (1998) 'A systematic review comparing continuity of midwifery care with standard maternity services', British Journal of Obstetrics and Gynaecology, 105: 1160-1170.
125. WHOQOL Group (1993) 'Study Protocol for the World Health Organisation project to develop a quality of life assessment instrument (WHOQOL)', Quality of Life Research, 2: 153-159.
126. Wiederman, M.W., Maynard, C. and Fretz, A. (1996) 'Ethnicity in 25 years of published sexuality research: 1971-1995', The Journal of Sex Research, 33: 339-342.
127. Wiggins, M., Oakley, A., Roberts, I. et al.(2004) 'The Social Support and Family Health Study: a randomised controlled trial and economic evaluation of two alternative forms of postnatal support for mothers living in disadvantaged inner city areas', Health Technology Assessment, 8(32).
128. Wight, D. and Obasi, A. (2002) 'Unpacking the "black box": the importance of process data to explain outcomes', in J. Stephenson, J. Imrie and C. Bonell (eds), Effective Sexual Health Interventions: issues in experimental evaluation, Oxford: Oxford University Press.
129. Yu, E.S.H. (1994) 'Legal and ethical issues relating to the inclusion of Asian/Pacific Islanders in clinical studies', in A. Mastroianni, R. Faden and D. Federman (eds), Women and Health Research: ethical and legal issues of including women in clinical studies, vol. 2, Washington, DC: National Academy Press.