Improving UK data on avoidable perinatal brain injury: review of data dictionaries and consultation.
van der Scheer JW., Komolafe V., Webster K., Iliodriomiti S., Roehr CC., Khalil A., Draycott T., Dewick L., Dunn G., Walsh R., Steer P., Giusti A., Cabling ML., Fahy N., ABC Contributor Group None., Dixon-Woods M.
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.