Brain injury around the time of birth may have serious consequences. Yet the data available around these circumstances is inconsistent. Sarah Clark, Research communications manager, and Jan van der Scheer, PhD, Senior Research Associate, The Healthcare Improvement Studies Institute (THIS Institute), University of Cambridge highlight the work that is being done to improve data collection as part of the Avoiding Brain Injury in Childbirth (ABC) programme.
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Brain injuries around the time of birth can have serious and life-changing effects for babies and their families. We need high quality data to help us understand how and why these injuries happen, and what could be done to prevent them.
Maternity and neonatal professionals already enter information about babies and mothers into local electronic records as part of their work, but this process can be challenging to do clearly and accurately.
We reviewed maternity and neonatal datasets used in the UK, and interviewed specialists to find out how we can use data better to help prevent brain injuries at the time of birth. We found inconsistencies in what data was recorded, and how it was interpreted, along with a lack of training and a need for better systems and platforms to share data with professionals and families.
We 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.
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.
Find out more:
Full paper: https://www.nature.com/articles/s41390-025-03842-3
See https://maternityandmidwifery.co.uk/improving-data-on-avoidable-brain-injury-around-the-time-of-birth/ for a further article on the ABC programme.
Sarah Clark, Research communications manager, and Jan van der Scheer, PhD, Senior Research Associate, The Healthcare Improvement Studies Institute (THIS Institute), University of Cambridge
February 2025