. 2025 Jan 30.

doi: 10.1038/s41390-025-03842-3. Online ahead of print.

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

Jan W van der Scheer¹, Victoria Komolafe², Kirstin Webster^{3

4}, Stamatina Iliodromiti⁵, Charles C Roehr^{6

7

8}, Asma Khalil³, Tim Draycott^{3

8}, Louise Dewick³, George Dunn³, Rachel Walsh⁹, Philip Steer³, Alessandra Giusti¹⁰, Mark L Cabling¹¹, Nick Fahy¹¹; ABC Contributor Group; Mary Dixon-Woods¹⁰

Collaborators, Affiliations

Collaborators

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, Tina Harris

Affiliations

¹ THIS Institute (The Healthcare Improvement Studies Institute), University of Cambridge, Strangeways Research Laboratory, Cambridge, CB1 8RN, UK. jan.vanderscheer@thisinstitute.cam.ac.uk.
² Royal College of Midwives, 10-18 Union Street, London, SE1 1SZ, UK.
³ Royal College of Obstetricians & Gynaecologists, 10-18 Union Street, London, SE1 1SZ, UK.
⁴ Department of Population Sciences, University of Leicester, Leicester, LE1 7RH, UK.
⁵ Women's Health Research Unit, Wolfson Institute of Population Health, Queen Mary University London, London, UK.
⁶ University of Bristol, Faculty of Health Sciences, Bristol, UK.
⁷ National Perinatal Epidemiology Unit, Clinical Trials Unit, Oxford Population Health, Medical Sciences Division, University of Oxford, Oxford, UK.
⁸ North Bristol NHS Trust, Bristol, BS10 5NB, UK.
⁹ NHS Resolution, E14 4PU, London, UK.
¹⁰ THIS Institute (The Healthcare Improvement Studies Institute), University of Cambridge, Strangeways Research Laboratory, Cambridge, CB1 8RN, UK.
¹¹ RAND Europe, Westbrook Centre Milton Road, Cambridge, CB4 1YG, UK.

PMID: 39885238
DOI: 10.1038/s41390-025-03842-3

Free article

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

Jan W van der Scheer et al. Pediatr Res. 2025.

Free article

. 2025 Jan 30.

doi: 10.1038/s41390-025-03842-3. Online ahead of print.

Authors

Collaborators

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, Tina Harris

Affiliations

¹ THIS Institute (The Healthcare Improvement Studies Institute), University of Cambridge, Strangeways Research Laboratory, Cambridge, CB1 8RN, UK. jan.vanderscheer@thisinstitute.cam.ac.uk.
² Royal College of Midwives, 10-18 Union Street, London, SE1 1SZ, UK.
³ Royal College of Obstetricians & Gynaecologists, 10-18 Union Street, London, SE1 1SZ, UK.
⁴ Department of Population Sciences, University of Leicester, Leicester, LE1 7RH, UK.
⁵ Women's Health Research Unit, Wolfson Institute of Population Health, Queen Mary University London, London, UK.
⁶ University of Bristol, Faculty of Health Sciences, Bristol, UK.
⁷ National Perinatal Epidemiology Unit, Clinical Trials Unit, Oxford Population Health, Medical Sciences Division, University of Oxford, Oxford, UK.
⁸ North Bristol NHS Trust, Bristol, BS10 5NB, UK.
⁹ NHS Resolution, E14 4PU, London, UK.
¹⁰ THIS Institute (The Healthcare Improvement Studies Institute), University of Cambridge, Strangeways Research Laboratory, Cambridge, CB1 8RN, UK.
¹¹ RAND Europe, Westbrook Centre Milton Road, Cambridge, CB4 1YG, UK.

PMID: 39885238
DOI: 10.1038/s41390-025-03842-3

Erratum in

Correction: Improving UK data on avoidable perinatal brain injury: review of data dictionaries and consultation.
van der Scheer JW, Komolafe V, Webster K, Iliodromiti S, Roehr CC, Khalil A, Draycott T, Dewick L, Dunn G, Walsh R, Steer P, Giusti A, Cabling ML, Fahy N; ABC Contributor Group; Dixon-Woods M. van der Scheer JW, et al. Pediatr Res. 2025 Jun;97(7):2491. doi: 10.1038/s41390-025-03949-7. Pediatr Res. 2025. PMID: 39994337 Free PMC article. No abstract available.

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.

Impact: Limited standardisation and linkage across UK data sources currently challenge the use of data as the basis of efforts to reduce risk of avoidable perinatal brain injury. A harmonisation programme involving consultation and co-design with healthcare professionals, families, and other specialists is needed to enable better capture and use of data in this key area. There is need to standardise the definition of avoidable perinatal brain injury, resolve inconsistencies in capturing data, improve linkage of data collected across existing data sources, and co-design a strategy for meaningful use of data.

PubMed Disclaimer

Conflict of interest statement

Competing interests: The authors declare no competing interests. Ethics approval and consent to participate: Patient consent was not required, as they were not involved in the conduct of this study. The UK’s Health Research Authority decision tool ( http://www.hra-decisiontools.org.uk/research/ ) showed that ethics approval was not required for the multi-professional consultation, as it was classified as a quality improvement activity, in which all of the participants were invited to join the authorship group and to be acknowledged in the project’s outputs. Participants were provided with information about the consultation, had the possibility to ask questions and withdraw their involvement at any time, and gave their written consent to take part and agree to recording of this quality improvement activity (including giving permission to publish anonymised quotes and synthesis of their expressed views).

References

1. Wu, Y. W., Croen, L. A., Shah, S. J., Newman, T. B. & Najjar, D. V. Cerebral Palsy in a Term Population: Risk Factors and Neuroimaging Findings. Pediatrics 118, 690–697 (2006). - PubMed - DOI
1. Liu, L. et al. Global, regional, and national causes of under-5 mortality in 2000–15: an updated systematic analysis with implications for the Sustainable Development Goals. Lancet 388, 3027–3035 (2016). - PubMed - PMC - DOI
1. Ockenden, D. Findings, conclusions and essential actions from the independent review of maternity services at The Shrewsbuty and Telford Hospital NHS Trust (APS Group on behalf of the Controller of Her Majesty’s Stationery Office, 2022).
1. Eunson, P. The long-term health, social, and financial burden of hypoxic-ischaemic encephalopathy. Dev. Med Child Neurol. 57, 48–50 (2015). - PubMed - DOI
1. NHS Resolution. Five years of Cerebral Palsy claims. A thematic review of NHS Resolution data (NHS Resolution, 2017).

LinkOut - more resources

Full Text Sources
- Nature Publishing Group
- White Rose Research Online

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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

Collaborators

Affiliations

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

Authors

Collaborators

Affiliations

Erratum in

Abstract

Conflict of interest statement

Similar articles

References

LinkOut - more resources

Full Text Sources