Improving ethnic data collection for statistics of cancer incidence, management, mortality and survival in the UK

Background: • Ethnic record keeping and monitoring has been identified as being important for over the past 20 years and has often been associated with negative rather than positive reasons • There is an identified need for the collection of ethnicity in healthcare settings • There is an “Evidence desert” with few “best practice reports” • There have been recent initiatives to collect ethnicity through Hospital Admissions (e.g. Hospital Episode Statistics) and Primary Care Findings of this feasibility project: Systematic review: • There is a paucity of published evidence regarding methodology of ethnicity data collection or ethnicity profiling • Many clinical articles use ethnicity data in their analyses, health surveys or risk assessment of particular diseases, but often the data are of variable quality • Self assessed ethnicity is better than observer assessment • Official ethnicity categories need to be re-examined and modified to represent new migration patterns Professional perception: • Lack of consistency at different levels of organisations • No clear rationale for collection/use of data • Data collected without training or explanation of its use • Not enough resources for ‘research data’ in general, without adding ethnicity Focus groups perception: • No objections to providing data in a healthcare setting • Willingness to engage in research • Lack of information as to the use of the data Groups actively looking at how to collect and use ethnicity data • South Thames registry looking at cancer rates for South Asians • Healthy Londoners’ project and London Public Health Observatory initiatives • Census categories extended to capture ‘British Born’ groups • Specialist libraries and JISC-mail electronic discussion groups already set up Recommendations – need for better training and information • Need training materials/workshops to raise awareness - Patients- why your doctor should know your ethnic group? - Professionals- how to ask and explain the importance of ethnicity data collection? • Work towards a culture of routine data collection of ethnicity at GP level • Need working groups to assess collection, completeness and validation • Need more reporting of ethnicity data in the healthcare setting, in order to improve planning and delivery of services for ethnic minority groups