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Recruitment of minority ethnic groups into clinical cancer research trials to assess adherence to the principles of the Department of Health Research Governance Framework: national sources of data and general issues arising from a study in one hospital trust in England
  1. Sylvia Godden1,
  2. Gareth Ambler2,
  3. Allyson M Pollock3
  1. 1Department of Epidemiology and Public Health, Health Care Evaluation Group, UCL, London, England
  2. 2Department of Statistical Science, UCL, London, England
  3. 3Centre for International Public Health Policy, University of Edinburgh, Edinburgh, Scotland
  1. Correspondence to Ms Sylvia Godden, Senior Research Fellow, Department of Epidemiology and Public Health, Health Care Evaluation Group, UCL, 1-19 Torrington Place, London WC1E 6BT, England; rmjdsag{at}ucl.ac.uk

Abstract

Background This article describes the issues encountered when designing a study to evaluate recruitment of minority ethnic groups into clinical cancer research in order to monitor adherence to the principles for good practice set out in the Department of Health, Research Governance Framework, England.

Methods (i) A review of routine data sources to determine whether their usefulness as a source of data on prevalence of cancer in the population by ethnic category. (ii) A local case study at one hospital trust to ascertain whether the ethnicity of cancer trial participants was representative of admitted cancer patients.

Results (i) The lack of a comparator population makes it problematic to assess recruitment levels by ethnic group in clinical research. (ii) The odds of being in a trial were 30% lower for a member of a minority ethnic group compared to a white cancer patient after adjusting for disease, age and gender, OR 0.70 (0.53 to 0.94). These results differed for each ethnic group; Asian patients did not appear under-represented while Black and Chinese did so. However, there are important caveats to the findings based on the limited recording of ethnicity.

Conclusions The lack of available data on the ethnicity of participants in clinical research and the prevalence of cancer in the population according to ethnicity makes it difficult to design a study to monitor representation of minority ethnic groups. This information is necessary to assess adherence to the Research Governance Framework principle that research evidence reflects the diversity of the population.

  • Ethnicity
  • cancer research trials
  • research governance framework
  • minorities

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Footnotes

  • Funding None, but institutional support from: the Joint UCL/UCLH/Royal Free Biomedical Research Unit, Health Care Evaluation Group, Department of Epidemiology and Public Health, UCL, and the Centre for International Public Health Policy, University of Edinburgh.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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