Cohort profile: Scottish Health and Ethnicity Linkage Study of 4.65 million people exploring ethnic variations in disease in Scotland

Abstract

Many countries require health services to show that they are meeting the needs of ethnic minority populations. This requires data on health status, healthcare uptake and outcomes and population denominators. Weaknesses in routine data collection often make such requirements difficult to meet. Routine data sources in Scotland, as in most countries, may not include a patient’s ethnicity. In Scotland, the need for such data is driven by both policy and legislation responding to rapidly increasing ethnic diversity. Fair For All (2003), Scotland’s policy, provides a strategic approach to improve the health of minority ethnic groups. The UK Race Relations (Amendment) Act (2000) placed a duty on public bodies to promote racial equality. These mandates are reflected in guidance on ethnic monitoring. Appropriate service and research is undermined by the lack of data. Ethnic variations occur in all of Scotland’s national health priority areas, including coronary heart disease/stroke, cancer, maternal and child health and mental health. In view of the mismatch between need for and availability of data by ethnic group, Bhopal proposed a demonstration project to explore retrospective approaches. The project tested proposals including name search methods, analyses by country of birth, modelling/extrapolation from other nations’ datasets, and linkage methods. The demonstration project concluded that census health records linkage methods— in the context of this project first mooted by Povey— held most promise. To our knowledge, attempting matching of a national health dataset to a complete national census using demographic identifiers rather than national identity numbers had not been reported though health data linkage is well-established in the UK and internationally, including exploring ethnicity and health.