UK ethnicity data collection for healthcare statistics: the South Asian perspective

BACKGROUND: Ethnicity data collection has been proven to be important in health care but despite government initiatives remains incomplete and mostly un-validated in the UK. Accurate self-reported ethnicity data would enable experts to assess inequalities in health and access to services and help to ensure resources are targeted appropriately. The aim of this paper is to explore the reasons for the observed gap in ethnicity data by examining the perceptions and experiences of healthy South Asian volunteers. South Asians are the largest ethnic minority group accounting for 50% of all ethnic minorities in the UK 2001 census. METHODS: Five focus groups, conducted by trained facilitators in the native language of each group, recruited 36 South Asian volunteers from local community centres and places of worship. The topic guide focused on five key areas:1) general opinions on the collection of ethnicity, 2) experiences of providing ethnicity information, 3) categories used in practice, 4) opinions of other indicators of ethnicity e.g. language, religion and culture and 5) views on how should this information be collected. The translated transcripts were analysed using a qualitative thematic approach. RESULTS: The findings of this Cancer Research UK commissioned study revealed that participants felt that accurate recording of ethnicity data was important in healthcare with several stating the increased prevalence of certain diseases in minority ethnic groups as an appropriate justification to improve this data. The overwhelming majority raised no objections to providing this data when the purpose of data collection is fully explained. CONCLUSIONS: This study confirmed that the collection of patients' ethnicity data is deemed important by potential patients but there remains uncertainty and unease as to how the data may be used. A common theme running through the focus groups was the willingness to provide these data, strongly accompanied by a desire to have more information with regard to its use.