Improving UK data on avoidable perinatal brain injury: review of data dictionaries and consultation

Abstract

Background

High quality data is important to understanding epidemiology and supporting improvement efforts in perinatal brain injury. It is not clear which data items relevant to brain injury are captured across UK sources of routinely collected data, nor what needs to be done to ensure that those sources are fit for purpose in improving care.

Methods

We reviewed data dictionaries of four main UK perinatal data sources and consulted a multi-professional group (N = 27) with expertise in neonatal/maternity care, statistics, and clinical negligence.

Results

None of the data sources we reviewed currently captures, on its own, the range of items relevant to brain injury. Data items lack common definitions and ongoing linkage across the different sources. Our 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 for meaningful use of data.

Conclusions

Limited standardisation and linkage across UK data sources are key problems in using data to guide improvement efforts aimed at reducing risk of avoidable perinatal brain injury. A programme involving co-design with healthcare professionals and families to improve capture and use of data is now needed.

Metadata

Item Type:	Article
Authors/Creators:	van der Scheer, J.W. Komolafe, V. Webster, K. Iliodriomiti, S. Roehr, C.C. Khalil, A. Draycott, T. Dewick, L. Dunn, G. Walsh, R. Steer, P. Giusti, A. Cabling, M.L. Fahy, N. Frémeaux, A.E. Karia, A.M. Anderson, A. Leigh, B. Gale, C. Doherty, C. Wolstenholme, D. https://orcid.org/0000-0003-1507-6043 Walker, J. Gudgeon, J. Cowell, L. Knight, M. Jolly, M.C. Wahedally, M.A.H. van Hasselt, T.J. Harris, T. Dixon-Woods, M.
Copyright, Publisher and Additional Information:	© The Author(s) 2025, corrected publication 2025. Open Access: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
Keywords:	Paediatrics; Biomedical and Clinical Sciences; Brain Disorders; Physical Injury - Accidents and Adverse Effects; Surveillance and distribution; Neurological; Generic health relevance; Good Health and Well Being
Dates:	Published: 30 January 2025 Published (online): 30 January 2025 Accepted: 20 November 2024
Institution:	The University of Sheffield
Academic Units:	The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > Health Sciences School (Sheffield)
Depositing User:	Symplectic Sheffield
Date Deposited:	28 Feb 2025 14:57
Last Modified:	03 Mar 2025 06:38
Status:	Published online
Publisher:	Springer Science and Business Media LLC
Refereed:	Yes
Identification Number:	10.1038/s41390-025-03842-3
Related URLs:	PubMed URL Erratum/Corrigendum
Sustainable Development Goals:
Open Archives Initiative ID (OAI ID):	oai:eprints.whiterose.ac.uk:223862

Download

Published Version

Filename: s41390-025-03842-3.pdf

Licence: CC-BY 4.0

CLICK TO DOWNLOAD

CORE (COnnecting REpositories)

Improving UK data on avoidable perinatal brain injury: review of data dictionaries and consultation

Abstract

Metadata

Download

Published Version

Export

Statistics