Contributing to the National Neonatal Research Database
The UK Neonatal Collaborative
The UK National Neonatal Collaborative was established in 2012 to support UK neonatal units in utilising clinical data to improve patient care and outcomes, service delivery and evaluation and national audit. The Collaborative comprises neonatal units contributing data to the National Neonatal Research Database (NNRD). All neonatal units in England, Scotland and Wales contribute data to the NNRD. Each neonatal unit has a UK Neonatal Collaborative Lead. Northern Ireland neonatal units have expressed intention to contribute pending regulatory approval.
How the National Neonatal Research Database is formed
Neonatal units utilise Electronic Patient Records for their patients. A standard set of information (the Neonatal Data Set; ISB1595) is extracted from the Electronic Patient Records at regular intervals and transmitted over the secure NHS N3 network to the Neonatal Data Analysis Unit at the Chelsea and Westminster NHS Foundation Trust Hospital campus of Imperial College London. Data are held in a 256bit encrypted MS SQL 2012 file on a secure NHS server in accordance with Data Security and Protection Toolkit.
Data are quality assured and anonymised before entry into the National Neonatal Research Database. Checks include quantification of missing data, and identification of duplicate, out-of-range and internally inconsistent variables. Potentially erroneous data identified during the quality assurance processes are made available for review by neonatal units using the secure N3 network and the UK Neonatal Collaborative Online Portal; access is governed by the IG toolkit of Chelsea and Westminster NHS Foundation Trust. Neonatal unit staff can check data identified as potentially erroneous and if necessary correct these in the baby’s Electronic Patient Record ensuring the patient also benefits from the quality assurance process. The National Neonatal Research Database is updated with the new information in the next extraction. Final lock-down of each patient record occurs at a defined point after discharge.
The National Neonatal Research Database is approved by the National Research Ethics Service (REC reference 16/LO/1093) and the Scottish Public Benefit and Privacy Panel. Approval is also held from the Confidentiality Advisory Group of the Health Research Authority to receive a limited number of patient identifiers (NHS Number, Date of Birth and Post code) for linkage purposes only (ECC 8-05(f)/2010). Linkage for approved research purposes is carried out with Hospital Episode Statistics data and Office of National Statistics (ONS) mortality data supplied by the Health and Social Care Information Centre. Approval to receive data is held from the Caldicott Guardians and Lead Neonatal Clinicians of all contributing NHS trusts.
Contributing neonatal units are requested to complete a NDAU Caldicott Approval Form for NNRD . A copy of the introductory NNAP Calidicott Guardian letter [pdf] and a poster Why your baby's data are important (pdf), for display on neonatal units, are available here.
To join the UK National Neonatal Collaborative please complete and return a copy of the agreement to Richard Colquhoun, Neonatal Medicine Research Group and Neonatal Data Analysis Unit Manager or post to Neonatal Data Analysis Unit, 4th Floor, Chelsea and Westminster Hospital (Lift Bank D), 369 Fulham Road, London SW10 9NH.