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CanEth: Improving ethnicity data collection for statistics of cancer incidence, prevalence and survival in the United Kingdom – public and professionals perceptions
Gulnaz Begum1, Anil Gumber1, Mark Johnson2, Ala Szczepura1, Sue Wilson3, Janet Dunn1
1University of Warwick, Coventry, UK, 2De Montfort University, Leicester, UK, 3University of Birmingham, Birmingham, UK
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 the current literature and to canvass opinion from healthcare professionals and minority ethnic populations.
Results from a literature review of ethnicity data collection identified a paucity of published evidence on ethnicity data collection and monitoring. Many papers used ethnicity data but only a fraction discussed the methodology of data collection. This was confirmed when canvassing opinions from health professionals. The majority thought it was important to collect ethnicity but there is a lack of a consistent “voice” at different levels within organisations, no clear rational given to staff about the importance of good data collection and no training provided. Conversely the government has provided guidelines (2005) as to the best way to collect ethnicity in the primary and secondary care setting.
Focus groups were conducted with volunteers from ethnic minority groups, recruited from local community centres. A common theme running through the groups was the willingness to provide these data and their desire to have more information with regards to its use. Within the primary care setting QOF (Quality and Outcomes Framework, 2004) points are awarded for a new patient whose ethnicity is collected. However there is no training in data collection.
Recommendations include: 1) provision of training to professionals collecting the data, and, 2) working groups are needed to assess the collection, completeness and validation of data collected.
