Diversity & Equality in Health and Care Open Access

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Improving ethnicity data collection for health statistics in the UK

Mark RD Johnson, Ala Szczepura, Gulnaz Iqbal, Anil Gumber, Sue Wilson, Janet A Dunn

There is an identified need for the collection of ethnicity data in the healthcare setting. Accurate data on ethnicity are essential for informing policy makers, funders and public health experts about the incidence, prevalence and outcomes of specific conditions in population subgroups. There is emerging evidence that some ethnic groups are associated with an increased incidence of certain cancers, and disparities in access to services have been documented. Government initiatives are in place to collect ethnicity data in the healthcare setting, but the accuracy of the data needs to be validated. Cancer Research UK commissioned the Cancer Ethnicity (CanEth) project to gather robust evidence  and identify solutions to improve the collection of ethnicity data for cancer. The project set out to review current literature focusing on methods, interventions and barriers addressing the collection of ethnicity data. The review identified a paucity of published evidence on ethnicity data collection. Many clinical articles used ethnicity data, but few discussed the methodology of data collection. In general, however, self-reported ethnicity is recognised as the best method of data collection, and is preferable to observer assessment. Training is needed to raise awareness of the importance of ethnicity data and its use to facilitate the reduction of inequalities  .