National Neonatal Research Database Collaboration with NHS Digital

The Neonatal Data Analysis Unit (NDAU), part of the Neonatal Medicine Research Group at the Chelsea and Westminster Hospital campus of Imperial College London, and NHS Digital, are delighted to announce a collaboration that aims to enhance the utility of the UK National Neonatal Research Database (NNRD) as a unique national and international resource, and secure its long- term future.

The partnership, supported in part by a new award from the Medical Research Council, brings together the subject-matter expertise of the NDAU team with the data management capability and processing power of NHS Digital to advance this unique resource of specialist data.

The initial programme of work will take a minimum of 13 months to complete, and will include a period of consultation and testing to ensure the new model is fit for purpose. We will deliver the project through work streams focussing on legal and information governance requirements, technical deliverables, and access arrangements.

The Legal Mandate

The NDAU is currently leading a refresh of the Neonatal Dataset Information Standard (ISB 1595) which specifies the content of the NNRD. Under sponsorship from NHS England and NHS Improvement, the Neonatal Dataset will become mandatory in England and will flow directly to NHS Digital. The project team will engage with NHS Trusts in England to flow the data and will similarly work closely with colleagues in Scotland, Wales and Northern Ireland to continue to secure their valuable contributions to the NNRD.

The NNRD will maintain its status as a UK National Research Ethics Service approved database. Roles and responsibilities in respect of intellectual property, data controllership, service governance and access will be strengthened and clearly documented.

Data Processing and Data Quality

The NDAU operate a data validation process that results in a high-quality dataset. We will automate these processes and improve data quality further. Where automation is not possible, the NDAU will continue to provide subject matter expertise and close liaison with neonatal units.

Using powerful, modern data processing infrastructure, the technical work stream will:

• Move data processing into NHS Digital, utilising the Data Processing Service infrastructure and exploit the data linkage opportunities this will afford, e.g. with the Maternity Services Data Set
• Speed up the processing cycle, to make quality-assured data available more quickly
• Automate quality-assurance processes and increase the frequency and scope of these where appropriate, for example to support National Neonatal Audit Programme compliance reports

The Service Model, Consent and Data Access

A mature opt-out model exists for the NNRD, so that parents can choose exactly when to share their babies’ data, and this will continue. The strong relationships and mutual trust the NDAU have built with parents and clinicians is vital to the continuing success of the NNRD, and will remain at the heart of new arrangements. The project team will ensure data access models respect the wishes of parents, and uphold opt-outs, whether at database or extract level.