National Neonatal Data Set - Two Year Neonatal Outcomes Assessment

Introduction

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 Neonatal Critical Care Units in England.

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 Neonatal Critical Care, Transitional Care, or other non-standard critical care settings

• The National Neonatal Data Set - Two Year Neonatal Outcomes Assessment, carries data relating to a Two Year Neonatal Outcomes Assessment  carried out on the same child approximately two years after their treatment.  The Two Year Neonatal Outcomes Assessment  may be carried out by the same ORGANISATION  who was responsible for the neonatal CRITICAL CARE PERIOD, or by 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 where possible to existing ISB/ SCCI  / DCB   Information Standards and Collections (including Extractions)  (such as the Neonatal Critical Care Minimum Data Set  and Maternity Services Data Set Version 1) as well as to SNOMED CT and ICD codes.

The aim of the National Neonatal Data Set  is to extract data items from electronic clinical records, create a database of these items, and make this available 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.

ORGANISATIONS involved in the collection may choose whether to allow identifiable or unidentifiable (anonymised) information to flow to the Neonatal Data Analysis Unit.  Where anonymised data is to flow, the appropriate 'withheld' patient and parents demographic structures should be used (i.e. those with no  PERSON IDENTIFIERS, such as NHS NUMBER  or PERSON BIRTH DATE). 

In addition, where anonymisation is required, the dates and times of events carried throughout the data set (such as SAMPLE COLLECTION DATE AND TIME, PROCEDURE DATE AND TIME (ABDOMINAL X-RAY)) should be replaced with the specific relevant year and month of the event and the NUMBER OF MINUTES (BIRTH TO EVENT).  The National Neonatal Data Set  structure allows an either/or choice for these event items throughout the data set.

Data Collection

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 neonatal critical care delivered in England.  The Neonatal Data Analysis Unit has established a database, the National Neonatal Research Database (NNRD) to hold data comprising the National Neonatal Data Set, as a national resource.

Submission Information

For submission information, see the NDAU website.  Note that all date and time fields in the National Neonatal Data Set  should be in Co-ordinated Universal Time (UTC) for submission purposes.

Further Guidance

Further guidance has been produced by the Neonatal Data Analysis Unit  and is available on their website at: NDAU website.

Mandation

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  have not been approved by the Information Standards Board for Health and Social Care  and 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.