Improving ethnic data collection for cancer


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Janet Dunn

Warwick Medical School, University of Warwick, UK

Abstract

Improving ethnic data collection for cancer

The Cancer Research-UK Ethnicity (CanEth) project aimed to gather robust evidence and identify solutions to improve the collection of ethnicity data for cancer. Accurate data on ‘ethnicity’ is essential to inform policy makers, funders and public health experts as to the incidence, prevalence and outcomes of specific conditions in population subgroups. There is overwhelming evidence that some ethnic groups are associated with increased incidence of diabetes, hypertension, stroke and certain cancers, and that there may be disparities in access to services. Government initiatives are in place to collect ethnicity in the healthcare setting but the accuracy of data has yet to be validated.

The project set out to review the current literature (grey literature/reports as well as peer reviewed publications) and to canvass opinion from healthcare professionals, minority ethnic populations and a specialist advisory group including policy makers.

Recommendations from the CanEth project include:

1) national promotion of the importance of ethnicity data collection, 2)provision of training materials/workshops to professionals collecting the data, and, 3) working groups are needed to assess the collection, completeness and validation of data collected.

References

[1] Improving ethnic data collection for statistics of cancer incidence, management, mortality and survival in the UK. Cancer Research UK commissioned report. March 2008_V1.0. Iqbal G, Gumber A, Szczepura A, Johnson M, Wilson S and Dunn J.