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Improving data on brain injury around the time of birth: review and consultation

Published in:
Pediatric Research
Citation:

van der Scheer, J.W., Komolafe, V., Webster, K. et al. Improving UK data on avoidable perinatal brain injury: review of data dictionaries and consultation. Pediatr Res (2025). https://doi.org/10.1038/s41390-025-03842-3

Contributors

  • Jan van der Scheer
  • Victoria Komolafe
  • Kirstin Webster
  • Stamatina Iliodriomiti
  • Charles C. Roehr
  • Asma Khalil
  • Tim Draycott
  • Louise Dewick
  • George Dunn
  • Rachel Walsh
  • Philip Steer
  • Alessandra Giusti
  • Mark L. Cabling
  • Nick Fahy
  • Mary Dixon-Woods
  • See here for full list of authors

Why it matters

Brain injuries around time of birth, such as hypoxic-ischaemic encephalopathy (caused by lack of oxygen to the brain), can have serious and life-changing effects for babies and their families.

High quality data is needed to understand how and why these injuries happen, and what could be done to prevent them. Currently, maternity and neonatal professionals are asked to enter data of babies and women into a local electronic patient record as part of their clinical practice, but it can be difficult to record this information clearly and accurately.

Electronic patient record data collected locally are later added to national digital datasets (collections of data used for analysis that informs policy and practice). These datasets help improve services. However, it wasn’t clear which data about brain injuries were being collected in these datasets. It was also unclear what the biggest challenges are in making better use of the data available.

That’s why we undertook a review of maternity and neonatal datasets used in the UK. We also interviewed a group of specialists in maternity care, neonatal care, statistics, and clinical negligence to ask for their views on how to improve the use of data to help prevent brain injuries.

What we found

Each dataset we reviewed covered some, but not all of the items needed for a complete picture of how often brain injury happens, and what the most important risk factors are.

Linking the datasets is one solution, but that’s currently very difficult for many reasons. For example, the datasets use slightly different definitions for similar data items. And different healthcare trusts use different data descriptions and fields across their electronic patient record platforms.

Clinicians sometimes interpret the clinical data differently, which can lead to inconsistencies. Accurate recording of data during practice can also be hard because professionals sometimes lack the time or training to do this.

The consultation also showed the need for better systems and platforms to share data in an accessible and appropriate way with healthcare professionals and families. This would make it easier to use insights from the data to drive improvements.

Overall, our review and consultation identified the need for:

  • standardising the definition of avoidable perinatal brain injury,
  • resolving inconsistencies in capturing data,
  • improving linkage of data across existing data sources, and
  • co-designing a strategy with professionals, families, and other specialists to make the recording and use of data more feasible and meaningful.

Next steps

As a next step, we are working on a strategy as part of the Avoiding Brain Injury in Childbirth (ABC) programme that will aim to:

  • develop a single national data source dedicated to avoidable brain injury.
  • make recording of data more consistent and easier in practice.
  • inform activities to reduce the risk of brain injury.

With thanks to the ABC contributor group:

Alissa E. Frémeaux, Amar M. Karia, Annette Anderson, Bertie Leigh, Chris Gale, Cora Doherty, Daniel Wolstenholme, James Walker, Julia Gudgeon, Laura Cowell, Marian Knight, Matthew C. Jolly, Muhammed Ally Hussein Wahedally, Tim J. van Hasselt, and Tina Harris.

Share your views in a short survey to help to improve the collection and use of routinely collected data on avoidable brain injury around the time of birth. 

Survey link:  https://ths.im/4iLI7kY

Closing date: 23 February 2025

Time needed: 15 minutes

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