Capturing ethnicity in UK electronic health records and longitudinal studies (UKLLC- llc0026)

A record of patient ethnicity is needed to support fair patient care in the NHS. For example, guidelines for the prescription of medicines for high blood pressure, for sickle cell disease screening and for gestational diabetes screening all include recommendations based on ethnicity. The COVID-19 pandemic highlighted gaps in ethnicity records in the NHS. Concerns have also been raised that the ethnicity records held by the NHS do not reflect the ethnicity that patients self-identify with. Longitudinal research studies record participant ethnicity to enable research and often provide more flexibility for individuals to self identify.

Our objective is to use ethnicity data from longitudinal research studies to understand more about the quality and completeness of NHS ethnicity data. We will not make any judgement as to whether a record is ‘correct’ or not. Study data has been self reported by volunteer participants in a trusted relationship, which is separate from their healthcare. This provides a unique opportunity to compare self-reported ethnicity with NHS coded ethnicity.

This will inform the understanding of the quality of ethnicity recording in the UK LLC to support the interpretation of research findings as to how COVID-19 outcomes, including those relating to long COVID, differ by ethnic group. This work will also make recommendations to help inform current NHS policy initiatives and, if needed, activities to improve the recording of patient ethnicity.

To do this, we will count how many ethnicity records people have. We will study if records of ethnicity change over time. We will compare ethnicity records from the NHS with ethnicity records from longitudinal research studies.

We are mindful of the sensitivities of recording ethnicity within official records and that any patterns we identify may be driven by a range of complex reasons. For this reason, a steering group of experts and ethnically diverse public contributors will support this project. The steering group members will contribute to the design of the study, the interpretation of results and the development of communication strategies and materials to explain our findings.