Article Text
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
Statistics from Altmetric.com
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.
Read the full text or download the PDF:
Other content recommended for you
- Biochemical abnormalities in COVID-19: a comparison of white versus ethnic minority populations in the UK
- Understanding why some ethnic minority patients evaluate medical care more negatively than white patients: a cross sectional analysis of a routine patient survey in English general practices
- Socioeconomic inequalities in acute myocardial infarction incidence in migrant groups: has the epidemic arrived? Analysis of nation-wide data
- Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study
- Attitudes towards coronavirus (COVID-19) vaccine and sources of information across diverse ethnic groups in the UK: a qualitative study from June to October 2020
- Policy for home or hospice as the preferred place of death from cancer: Scottish Health and Ethnicity Linkage Study population cohort shows challenges across all ethnic groups in Scotland
- Reporting of data on participant ethnicity and socioeconomic status in high-impact medical journals: a targeted literature review
- Accuracy of routinely recorded ethnic group information compared with self-reported ethnicity: evidence from the English Cancer Patient Experience survey
- Ethnic differences in cardiovascular morbidity and mortality among patients with breast cancer in the Netherlands: a register-based cohort study
- Mortality differentials 1991−2005 by self-reported ethnicity: findings from the ONS Longitudinal Study