First UK-wide data platform for studying long term health of mums and babies

Overview

Researchers have brought together existing electronic birth cohorts into a unified format for research across all four UK nations. This will enable faster access to more comprehensive, UK-wide health data, for research on pregnant mums and their babies.

The challenge

Pressures on the NHS, the cost-of-living crisis and the pandemic have widened the gap between affluent and deprived people in the UK. This is harming the health of some expectant mums and their babies, and could affect infants’ development, future health and life opportunities. Research on anonymised, routinely collected electronic health records (such as GP records) gives scientists valuable insights into health trends over time. This can shape health policy to prevent illness. But until now, data has been collected and stored differently across the four UK nations and fragmented across different cohort studies, formats and types, with varying coding and requirements for access. This makes it difficult for researchers to compare like with like between the four UK nations and get a clear picture of maternal and child health.

The solution

 The Mother and Infant Research Electronic Data Analysis (MIREDA) partnership, co-led by HDR UK’s Professor Sinead Brophy, has established a UK-wide, unified platform hosting birth cohort routinely collected data for use in research for 4.35 million babies born since January 2014. It includes data from the Clinical Practice Research Datalink (which covers most of England as well as Wales and Northern Ireland data), as well as cohort studies in Bradford, South London and . It is a live, dynamic platform that will follow up expectant mums and their babies for decades, growing by around 500,000 live births each year. The data is stored safely and securely within trusted research environments (TREs) and the platform uses the standards of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) to make all the data consistent. a ‘one-stop-shop’ for UK health research on mothers and babies.

The impact

MIREDA has created the first ever UK-wide, electronic birth cohort. With federated analysis, researchers will eventually be able to use the platform to directly compare different policy and healthcare approaches taken by the four UK nations to see which works best – whether that’s on premature birth or the impact of maternity grants given to less well-off mums, for example. Swansea University’s Mike Seaborne, co-lead author of the study, explains:

“The idea is that people can go in and do their research based on data up and down the UK and try and figure out what we’re doing right, what we’re doing wrong, what we need more research on, and so on.”

Traditional birth cohorts follow a group of people born during one snapshot in time, which quickly gets out of date. But one of MIREDA’s strengths is that it continuously collects, real-world data from the NHS and other sources.

“We are dynamic, in the sense our cohort is always evolving. Every time we have an update, we’ve got new births going forward. So we can choose from there which people we want to look at, what decade, or what era and follow them through as well,” explains Mike.

What is more, the platform will save time for researchers, because they will only need to make one application rather than many individual ones for each TRE, and code for research will also only need to be written and submitted once.

The next steps toward federated analysis will be to bring that everyone agrees is safe, secure and fit for purpose – a process which Mike hopes could happen within the next year. Partners in Europe, Brazil and South America are keen to link their data to the platform too, which will further enhance its research power.