A groundbreaking study led by Population Data Science at Swansea University has resulted in the creation of a comprehensive longitudinal harmonised national ethnicity spine for Wales. Leveraging 22 years of anonymised health and administrative data from over 4.2 million individuals, researchers have developed a robust research ready-data asset (RRDA) to address the urgent need for improved ethnicity data in healthcare research.
The COVID-19 pandemic highlighted health disparities among different ethnic groups, underscoring the importance of accurate and accessible ethnicity data. The new ethnicity spine harmonises multiple data sources, ensuring consistency and reliability for researchers. The study utilised data from 26 distinct sources within the Secure Anonymised Information Linkage (SAIL) Databank, encompassing 46 million ethnicity records over the 22-year period from 2000 to 2021. This approach allowed researchers to create a comprehensive and research-ready data asset that harmonises, de-duplicates, and makes ethnicity data accessible for healthcare research.
SAIL Databank’s extensive and securely managed data ecosystem was instrumental in bridging the 10-year gap between census data collections—often the sole resource for ethnicity data. The ability to capture and curate information through routinely collected data underscores the value of comprehensive approaches for health research. By employing four distinct selection methods (latest, mode, weighted mode, and composite), the study demonstrated the effectiveness of categorising ethnic groups across various demographic factors such as age, sex, deprivation, health board, and residential location.
The results, published in BMJ Open, align closely with the Office for National Statistics (ONS) 2011 census data, confirming the spine’s accuracy. With a record completeness rate of over 95% in 2021, the RRDA has been utilised in numerous studies and contributed to various outputs completed and published through the One Wales collaboration. This demonstrates its value as a tool for researchers aiming to understand and address ethnic health inequalities.
Professor Ashley Akbari, co-lead author of the study, stated: “The development of the population-scale individual-level linked ethnicity spine provides a robust maintainable resource for researchers in the One Wales project, as well as other users and projects who access data within the SAIL Databank to utilise ethnic group information for research in Wales. This resource also offers a reproducible method and template that can be easily deployed in other trusted research environments in the UK and beyond.”
Fatemeh Torabi, co-lead author, added: “Our work enables research on sub-populations, which is key to promoting diversity and inclusion in primary data assets for research. This work paves the way for more effective and impactful research and policy, enabling the development of more targeted interventions that promote equitable outcomes for all.”
This study was part of the One Wales collaboration response to the COVID-19 pandemic, supported and funded by the Medical Research Council, Health Data Research UK, Economic and Social Research Council (ESRC), UK Research and Innovation (UKRI), ADR Wales, and the Wales COVID-19 Evidence Centre.
Read more about this study here: https://bmjopen.bmj.com/content/14/8/e077675
