The National Neonatal Data Set consists of a defined list of data items that are extracted from electronic clinical records created by clinical staff on all admissions to NHS Neonatal Units in England, Wales and Scotland.
The National Neonatal Data Set is in two parts:
- The National Neonatal Data Set - Episodic and Daily Care covers the period of time a baby is cared for in a Neonatal Unit regardless of the designation (Neonatal Intensive Care Unit, Local Neonatal Unit, Special Care Baby Unit, Transitional Care Unit)
- The National Neonatal Data Set - Two Year Neonatal Outcomes Assessment covers data relating to a Two Year Neonatal Outcomes Assessment carried out on the same child approximately two years after their stay in a Neonatal Unit.
- The Two Year Neonatal Outcomes Assessment may be carried out by the same ORGANISATION responsible for the Neonatal Unit admission or a different ORGANISATION.
The two neonatal data sets comprise data items relating to PATIENT demographics, CLINICAL INTERVENTIONS, outcomes, and PATIENT DIAGNOSES. Each data item is mapped or in the process of being mapped where possible to existing Information Standards and Data Collections (including Extractions) (such as the Neonatal Critical Care Minimum Data Set and Maternity Services Data Set) as well as to SNOMED CT and ICD codes.
The National Neonatal Data Set consists of a defined list of data items that are extracted from electronic clinical records created by clinical staff relating to all admissions to a Neonatal Unit in England, Wales and Scotland. The Neonatal Data Analysis Unit has established a database, the National Neonatal Research Database, to hold data comprising the National Neonatal Data Set, as a national resource, to serve a variety of needs, so avoiding duplicate data collections for different purposes, minimising the burden placed upon clinical teams, and promoting data quality and completeness.
Identifiable information (i.e. PERSON IDENTIFIERS, such as NHS NUMBER) is pseudonymised by the System Supplier before being submitted to the Neonatal Data Analysis Unit. These pseudonymised data items are listed alongside their identifiable counterparts in the National Neonatal Data Set. Only data from PATIENTS whose parents have not opted-out of secondary uses of their babies data will flow to the Neonatal Data Analysis Unit.
Where anonymisation is required, the dates and times of events carried throughout the data set (such as CODED PROCEDURE TIMESTAMP (SAMPLE COLLECTION), CODED PROCEDURE TIMESTAMP (ABDOMINAL X-RAY) should be replaced with the specific relevant year and month of the event and the NUMBER OF MINUTES (BIRTH TO EVENT).
Further guidance has been produced by the Neonatal Data Analysis Unit and is available on their website at: Neonatal Data Analysis Unit.
The Mandation column indicates the recommendation for the inclusion of data.
- M = Mandatory: this data element is mandatory and the technical process (e.g. submission of the data set, production of output etc) cannot be completed without this data element being present
- R = Required: NHS business processes cannot be delivered without this data element
- O = Optional: the inclusion of this data element is optional as required for local purposes
- P = Pilot: this data element is for piloting use only.
Note: items in the Mandation column which are shown with notation P are included to facilitate piloting and testing of future Neonatal Data Analysis Unit data requirements, prior to formal inclusion in later versions of the data set. These items have been included in the data set layout in order to provide advance notice to data providers and system suppliers of the intention to require these items at a later date. Unless ORGANISATIONS are engaged in piloting activities relating to these items, they should NOT submit any data item marked P.