Improving UK data on avoidable perinatal brain injury: consultations and co-creation of recommendations

Abstract Objective Avoidable perinatal brain injury, including preventable hypoxic⍰ischaemic encephalopathy (HIE), remains a major global challenge for maternity care. In the UK, progress is hindered by weaknesses in infrastructure of routinely collected perinatal data. We sought to develop a strategy to support improvement in data relating to potentially avoidable HIE. Design Online survey of UK-based professionals, structured discussions with a multidisciplinary advisory group, and three workshops with patient/family representatives. Setting United Kingdom. Main outcome measures Co-created recommendations for improving the consistency, comprehensiveness, linkage, quality, and practical use of routinely collected UK maternity and neonatal data related to potentially avoidable HIE. Results Between 85–98% of survey participants ( N =411) rated most of the data items proposed as characterising avoidable brain injury as important. They also identified data gaps, particularly for intrapartum risk factors. Participants wanted accessible, unit⍰level feedback and capability⍰building for interpreting data, while cautioning against sharing data with families without context. The advisory group ( n =35) and patient/family representatives ( n =9) converged on 15 recommendations covering: definitions; a core item catalogue and shared data dictionary; electronic patient record interoperability; workflow⍰integrated data capture; secure individual⍰level linkage with longer⍰term follow⍰up; strengthened audit and feedback; and improved capture and sharing of data relevant to families. Conclusions The recommendations offer a roadmap for developing an integrated data source that builds on existing datasets of routinely collected maternity and neonatal data. Even a basic version of this data source would already help promote actionable use of data and guide investments in digital infrastructure that enables continuous improvement cycles. Key messages What is already known on this topic Efforts to reduce avoidable perinatal brain injury in the UK are hindered by fragmented maternity and neonatal data systems, including inconsistent definitions, limited linkage across datasets, duplication in data entry practices, and incomplete coverage of key data items. What this study adds This study presents strategic recommendations for improving UK data on potentially avoidable perinatal brain injury, collaboratively developed with maternity and neonatal professionals, data specialists, and patient and family representatives. The 15 recommendations set out ways to strengthen definitions, comprehensiveness, standardisation, linkage, quality, and practical use of routinely collected data relevant to avoidable perinatal brain injury. How this study might affect research, practice or policy The set of recommendations offers a roadmap for developing an integrated data source that builds on existing datasets of routinely collected maternity and neonatal data. Even a basic version of an integrated data source would already help promote meaningful and actionable use of data for prevention of perinatal brain injury, and guide future investment in digital infrastructure that enables continuous improvement cycles.