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| National Paediatric Mortality Database | |
|---|---|
| Name | National Paediatric Mortality Database |
| Type | Surveillance and audit registry |
| Founded | 2013 |
| Jurisdiction | United Kingdom |
| Headquarters | London |
| Parent agency | Department of Health and Social Care |
National Paediatric Mortality Database The National Paediatric Mortality Database is a United Kingdom clinical audit and surveillance registry established to systematically collect, analyse and report information on deaths in children. It interfaces with healthcare systems such as the National Health Service, specialist centres including Great Ormond Street Hospital, academic institutions like the University of Oxford and the University of Cambridge, and policy bodies such as the Department of Health and Social Care and NHS England. The database supports quality improvement initiatives linked to Royal College of Paediatrics and Child Health guidance, coronial inquiries, and research partnerships with organisations including the Medical Research Council and the Wellcome Trust.
The database was developed in response to inquiries involving institutions such as Alder Hey Children's Hospital, Bristol Royal Hospital for Children, and the Healthcare Safety Investigation Branch, and aligns with national reviews from bodies like the Care Quality Commission, the Children and Young People’s Health Outcomes Forum, and the National Confidential Enquiry into Patient Outcome and Death. Its primary purpose is to produce linked datasets that inform clinicians at University College London Hospitals, policy-makers at the Department of Health and Social Care, and researchers at Imperial College London and King's College London about patterns seen in paediatric mortality across trusts including Manchester University NHS Foundation Trust and Sheffield Children's NHS Foundation Trust. It was influenced by international examples and collaborations with organisations such as the World Health Organization, European Centre for Disease Prevention and Control, and UNICEF.
Governance arrangements involve statutory and advisory stakeholders such as NHS England, Public Health England, the Care Quality Commission, the Royal College of Paediatrics and Child Health, and professional regulators like the General Medical Council. Oversight committees include clinicians from Birmingham Children’s Hospital, data governance representatives from the Information Commissioner's Office, and academic leads from the London School of Hygiene & Tropical Medicine. Administrative functions are coordinated with regional networks such as Health Education England and commissioning groups exemplified by Clinical Commissioning Groups and Integrated Care Systems. Funding and strategic direction have intersected with funders and bodies like the National Institute for Health and Care Research, the Medical Research Council, and charitable partners including Great Ormond Street Hospital Charity.
The database ingests case-level data from NHS trusts, paediatric intensive care units at Addenbrooke's Hospital, neonatal units at St Thomas' Hospital, and district general hospitals across regions represented by the Northern Care Alliance and Guy's and St Thomas' NHS Foundation Trust. Data fields encompass demographic identifiers comparable to Office for National Statistics outputs, clinical coding aligning with International Classification of Diseases used by the World Health Organization, and contributory information from coroners and Child Death Overview Panels established under local safeguarding partnerships. Linkage occurs with registries such as the Paediatric Intensive Care Audit Network and national datasets managed by NHS Digital and the Office for National Statistics to achieve comprehensive coverage across England, Wales, Scotland, and Northern Ireland in conjunction with devolved administrations.
Security and privacy frameworks reference standards promoted by the Information Commissioner's Office, NHS Digital, and governance models endorsed by the Health Research Authority and Research Ethics Committees. Ethical oversight involves institutional review boards at universities like the University of Edinburgh and Queen Mary University of London, and data sharing agreements mirror templates used by Public Health England and the National Disease Registration Service. Measures include pseudonymisation consistent with NHS Digital practice, controlled access panels comparable to those used by the UK Biobank and Clinical Practice Research Datalink, and safeguards for sensitive cases involving coronial processes and safeguarding agencies such as local authorities and children’s services.
Analytical outputs follow methodologies deployed in audits by the Royal College of Paediatrics and Child Health and national reports by NHS England and the Care Quality Commission, employing statistical techniques used by the Office for National Statistics and academic groups at Imperial College London. Reports are disseminated to stakeholders including paediatric networks, the British Association of Perinatal Medicine, and commissioning bodies, and inform systematic reviews produced by Cochrane Collaboration contributors. Findings feed into peer-reviewed journals such as The Lancet, Archives of Disease in Childhood, and BMJ, and into national patient safety alerts coordinated with the Medicines and Healthcare products Regulatory Agency.
Outputs have supported guideline changes promoted by the Royal College of Paediatrics and Child Health, influenced commissioning decisions by NHS England and local Integrated Care Boards, and informed safeguarding practice used by local authorities and Child Death Overview Panels. Case series and thematic reviews have affected clinical pathways at children’s hospitals like Evelina London, contributed to training curricula endorsed by Health Education England, and underpinned research funded by the National Institute for Health and Care Research and charity partners such as the Wellcome Trust and Great Ormond Street Hospital Charity.
Limitations include variable data completeness across trusts exemplified by variations reported from district general hospitals and specialised centres, challenges in timely linkage with datasets held by NHS Digital and the Office for National Statistics, and legal complexities involving coronial data and data protection law enforced by the Information Commissioner’s Office. Operational challenges mirror issues faced by registries such as the Paediatric Intensive Care Audit Network and UK Renal Registry, including resource constraints, heterogeneity in clinical coding, and the need to balance rapid learning with procedural safeguards overseen by Research Ethics Committees and the Health Research Authority.
Category:Health databases