Cohort profile: Scottish Health and Ethnicity Linkage Study of 4.65 million people exploring ethnic variations in disease in Scotland
International Journal of Epidemiology
Date
2010Author
Bhopal, Raj
Fischbacher, Colin
Povey, Christopher
Chalmers, Jim
Mueller, Ganka
Steiner, Markus
Brown, Helen
Brewster, David H
Bansal, Narinder
Metadata
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.