Completeness and representativeness of ethnicity data in the UK Clinical Practice Research Datalink (CPRD) and Hospital Episode Statistics (HES)

Study type
Protocol
Date of Approval
Study reference ID
21_000383
Lay Summary

The Clinical Practice Research Datalink (CPRD) is a repository of primary care electronic healthcare records in the United Kingdom (UK). CPRD collects anonymised patient data from a network of general practices across the UK. Primary care data from CPRD can be linked to secondary care data from Hospital Episode Statistics (HES) in England. Both CPRD and HES have the ability for ethnicity to be recorded in a patient record.

This study is designed to describe the ethnicity recording in CPRD primary care data and in HES secondary care data. We will assess the completeness of ethnicity coverage in CPRD, meaning the proportion of patients in CPRD and in HES that have ethnicity data. We will also assess the agreement of ethnicity recordings in patients who have multiple recordings in CPRD, in HES, and in CPRD combined with HES. This is important as patients with multiple discordant ethnicity recordings may not be confidently classified for research purposes. Finally, we will assess the representativeness of the CPRD patient population in terms of ethnicity by comparing the distribution of ethnicity classification in CPRD to that of the general populations of the UK, Great Britain, England, Scotland, Wales, and Northern Ireland. The representativeness of ethnicity recording in CPRD combined with HES will be compared to that of the general population of England.

This project will provide a better understanding of ethnicity recording in CPRD and HES and will serve to improve interpretation of research results and translation of those results into practice for patients.

Technical Summary

This study will be a retrospective cohort study of completeness and representativeness of the ethnicity recording in the Clinical Practice Research Datalink (CPRD) GOLD and Aurum databases. Additionally, ethnicity recoding in English secondary care, from the Hospital Episode Statistics (HES), will be linked to English patients in CPRD GOLD and CPRD Aurum for a more complete picture of the completeness and representativeness of ethnicity.

Firstly, we will assess the completeness of ethnicity data in CPRD and in CPRD linked with HES by determining the proportion of patients with ethnicity recorded. We will assess the completeness of ethnicity recording annually in each database. This is because from 2006-2011, the Quality and Outcomes Framework incentivised ethnicity recording in primary care. Secondly, we will assess the agreement of ethnicity recordings in patients who have multiple recordings in CPRD, in HES, and in CPRD combined with HES. Finally, we will assess the representativeness of ethnicity distribution in CPRD and CPRD combined with HES compared with the ethnicity distributions from the 2011 Census in the United Kingdom, Great Britain, England, Scotland, Wales, and Northern Ireland.

This project will benefit patients and researchers by providing up-to-date information on this important demographic variable including the completeness, usability, limitations, and representativeness of ethnicity in CPRD and HES to inform choice of data sources, interpretation of results, and translation of those results into practice for patients.

Health Outcomes to be Measured

Proportion of patients in CPRD with a usable ethnicity recorded in CPRD and/or linked HES
Agreement of ethnicity recordings in CPRD for patients with multiple records
Agreement of ethnicity recordings in HES for patients with multiple records
Agreement of ethnicity recordings between CPRD and HES
Representativeness of ethnicity in CPRD and linked HES compared to the general population

Collaborators

Eleanor Axson - Chief Investigator - CPRD
Eleanor Axson - Corresponding Applicant - CPRD
Helen Booth - Collaborator - CPRD
Karen Cuenco - Collaborator - The Gates Foundation
Mia Harley - Collaborator - CPRD
Preveina Mahadevan - Collaborator - CPRD
Rebecca Ghosh - Collaborator - CPRD
Suhail Shiekh - Collaborator - CPRD

Former Collaborators

Mia Harley - Collaborator - CPRD

Linkages

2011 Rural-Urban Classification at LSOA level;2011 Rural-Urban Classification at LSOA level;HES Accident and Emergency;HES Admitted Patient Care;HES Diagnostic Imaging Dataset;HES Outpatient;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation