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

IQBAL, Gulnaz, GUMBER, Anil, SZCZEPURA, Ala, JOHNSON, Mark, WILSON, Sue and DUNN, Janet (2007). Improving ethnic data collection for statistics of cancer incidence, management, mortality and survival in the UK. Project Report. University of Warwick for Cancer Research UK. (Unpublished)

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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

Item Type: Monograph (Project Report)
Research Institute, Centre or Group - Does NOT include content added after October 2018: Centre for Health and Social Care Research
Depositing User: Anil Gumber
Date Deposited: 26 Jan 2017 12:36
Last Modified: 12 May 2021 19:03

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