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 audits.
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.
We will develop an updated access model to meet the requirements of different stakeholders and the regulatory requirements of all four UK nations, whilst continuing to protect the security and sustainability of the NNRD. Access will remain controlled, with the NDAU sharing responsibility for governance and decision-making as appropriate, with NHS Digital and any other relevant authority.
Oversight will continue to be provided by the NDAU Steering Board. Requests for access will additionally benefit from independent oversight by IGARD (Independent Group Advising on the Release of Data), who review every request for data dissemination made through NHS Digital’s Data Access Request Service (DARS), and as required, equivalent arrangements for the devolved nations. The project team will put together options for NNRD data access and will consult widely to ensure that the best processes for stakeholders are implemented. This will include options for cost recovery by Trusts where appropriate.
The project will realise benefits immediately, however there are opportunities for the longer term that the team want to put forward for consideration and prioritisation, for example:
- Burden reduction and eliminating duplication: there are a number of other collections that use similar or related data, for example the Congenital Malformations dataset, ICCQIP (Infection in Critical Care Quality Improvement Programme) dataset and the NCCMDS (National Critical Care Minimum Dataset); the project will involve evaluation of these to identify opportunities for consolidation
- Increasing value through other linked assets, for example genomics sequencing data and physiological data
- Opportunities to contribute to related initiatives, for example Discover-Now, one of seven new national data hubs announced October 2019 by Health Data Research UK
- International research collaborations
We will provide updates about this exciting collaboration as the project develops. The project team is currently convening working groups and putting together terms of reference. For the moment, all NNRD related processes will continue as before and no actions are required on the part of clinical teams, neonatal networks or NHS Trusts.
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UK Health Data Research Alliance
The Neonatal Data Analysis Unit is proud to have become a member of the UK Health Data Research Alliance. This is an alliance of health data providers, custodians and curators dedicated to improving human health by maximising the potential of multiple forms of health data to accelerate progress in biomedicine, health and care. The Alliance facilitates partnership working across NHS organisations and other health data custodians, and promotes public engagement and ethical, consistent approaches in the use of health data. The Alliance is co-ordinated by Health Data Research UK.
eNewborn is a neonatal bench-marking platform developed by Professor Dominique Haumont, emeritus professor of neonatal medicine, Saint-Pierre University Hospital, Brussels, and former president of the Belgian Society of Neonatology. We are pleased to announce that following a long-standing collaboration, eNewborn will be relocated to Imperial College London with a widened remit that includes support for research, audit and policy development.