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What is the difference between summary records (SR) and electronic patient records (EPR)?

SR is an electronic system for recording essential daily clinical summary data, which are usually entered at the point of care. This will be supplemented with a paper patient notes. BadgerNet Summary System is the most commonly used neonatal SR in the UK. EPR is designed to support full paperless working within a neonatal unit and has additional features in addition to an SR, including observations and fluid charts. Examples of commonly used EPR systems are BadgerNet, CERNER and Epic. At present, most neonatal units within the UK use a BadgerNet summary system rather than a full EPR.

How many datasets are there?

There are two approved neonatal NHS Information Standards in England and Wales, namely the Neonatal Dataset (NDS) and the Neonatal Critical Care Minimum Dataset (NCCMDS). Currently, NDS and NCCMDS are in used in England and Wales only. Refer to the glossary table below for further information on the NDS and NCCMDS. The Neonatal Network Northern Ireland (NNNI) report routinely collected data through the Neonatal Intensive Care Outcomes Research and Evaluation (NICORE).

What is an approved NHS Information Standard?

An NHS Information Standard ensures consistency in data variables submitted from different SR and EPR systems and hence is important in the creation of a high-quality multi-purpose single national repository of data. Without a defined NHS Information Standard, Trusts would not know what data to extract from their electronic data systems and submit to secondary users. The Data Alliance Partnership Board (previously the Data Coordination Board) oversees the rigorous approval process for NHS Information Standards.

What variables are in the NDS?

The NDS contains over 400 defined data items. Data range from patient demographics and diagnoses to daily clinical interventions and outcomes.

Who decides what is in the NDS?

The NDS was developed by and is currently maintained at the Neonatal Data Analysis Unit (NDAU) of Imperial College London. Every five years, the Neonatal Data Set is reviewed and refreshed following wide stakeholder consultation. The most recent version was approved in June 2022. These metadata are available through the Health Data Research UK Gateway.

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