van der Scheer Jan W, Komolafe Victoria, Webster Kirstin, Iliodromiti Stamatina, Roehr Charles C, Khalil Asma, Draycott Tim, Dewick Louise, Dunn George, Walsh Rachel, Steer Philip, Giusti Alessandra, Cabling Mark L, Fahy Nick, Dixon-Woods Mary
THIS Institute (The Healthcare Improvement Studies Institute), University of Cambridge, Strangeways Research Laboratory, Cambridge, CB1 8RN, UK.
Royal College of Midwives, 10-18 Union Street, London, SE1 1SZ, UK.
Pediatr Res. 2025 Jan 30. doi: 10.1038/s41390-025-03842-3.
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.
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.
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.
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.
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.
高质量数据对于理解围产期脑损伤的流行病学以及支持改善措施至关重要。目前尚不清楚英国常规收集的数据来源中哪些与脑损伤相关的数据项被记录，也不清楚需要采取什么措施来确保这些来源适用于改善护理。
我们审查了英国四个主要围产期数据来源的数据字典，并咨询了一个由新生儿/产妇护理、统计学和临床过失方面的专家组成的多专业小组（N = 27）。
我们审查的所有数据来源目前都无法单独涵盖与脑损伤相关的一系列数据项。数据项缺乏通用定义，且不同来源之间缺乏持续的关联。我们的咨询确定了需要对可避免的围产期脑损伤的定义进行标准化，解决数据采集方面的不一致问题，改善现有数据来源之间的数据关联，并共同设计一项有意义地使用数据的策略。
英国各数据来源之间有限的标准化和关联性是利用数据指导旨在降低可避免的围产期脑损伤风险的改善措施的关键问题。现在需要一个与医疗保健专业人员和家庭共同设计的方案，以改善数据的采集和使用。
英国各数据来源之间有限的标准化和关联性目前对将数据用作降低可避免的围产期脑损伤风险的努力基础构成挑战。需要一个协调方案，包括与医疗保健专业人员、家庭和其他专家进行协商和共同设计，以便在这一关键领域更好地采集和使用数据。需要对可避免的围产期脑损伤的定义进行标准化，解决数据采集方面的不一致问题，改善跨现有数据来源收集的数据的关联性，并共同设计一项有意义地使用数据的策略。
