The release of Information Standards Notices is managed by the Data Alliance Partnership Board (DAPB).

An Information Standards Notice was previously known as a Data Set Change Notice (DSCN).

An Information Standards Notice (ISN) is either a notice of an:

• Information Standard approved by the Information Standards Board for Health and Social Care (ISB)
  Information Standards and Collections (Including Extraction) (ISCE) accepted by the Standardisation Committee for Care Information (SCCI) for formal approval by the Department of Health and Social Care or NHS England
• Information Standards and Collections (Including Extraction) approved by the Data Coordination Board (DCB).
• Information Standards and Collections (Including Extraction) approved by the Data Alliance Partnership Board (DAPB).
• Information Standard approved by the Information Standards Board for Health and Social Care (ISB)
• Information Standard and Data Collection (Including Extractions) (ISCE) accepted by the Standardisation Committee for Care Information (SCCI) for formal approval by the Department of Health and Social Care or NHS England
• Information Standard and Data Collection (Including Extractions) approved by the Data Coordination Board (DCB).
• Information Standard and Data Collection (Including Extractions) approved by the Data Alliance Partnership Board (DAPB).

When a health and social care ORGANISATION in England receives an Information Standards Notice, they ensure that they and their contractors comply with the notice as specified.

Further information on Information Standards Notices, see the NHS Digital website at Information Standards and Collections (Including Extractions).Further information on Information Standards Notices, see the NHS Digital website at Information standards and data collections (including extractions).

Details of all published Information Standards Notices can be found at the NHS Digital website: at Publications and Notifications.

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 NHS Neonatal Units in England, Wales and Scotland.

The National Neonatal Data Set is in two parts:

• National Neonatal Data Set - Episodic and Daily Care:
  • 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)
• National Neonatal Data Set - Two Year Neonatal Outcomes Assessment:
  • 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 Collections (Including Extraction) (such as the Neonatal Critical Care Minimum Data Set and Maternity Services Data Set) as well as to SNOMED CT and ICD codes. 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.

Submission Information

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

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

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 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.

On 1 October 2021, Public Health England (PHE) transferred all health protection functions to the UK Health Security Agency (UKHSA).

The definition has been retained until all Information Standards and Collections (Including Extraction) are updated to reflect the change.The definition has been retained until all Information Standards and Data Collections (including Extractions) are updated to reflect the change.

Public Health England is an ORGANISATION.

Public Health England (PHE) is an executive agency of the Department of Health and Social Care.

Public Health England is responsible for protecting and improving the nation’s health and wellbeing, and reducing inequalities.

Note: from 1 April 2013 Public Health England took on the responsibilities previously undertaken by the Health Protection Agency (HPA), Public Health Observatories (PHOs), the National Treatment Agency (NTA) and a number of other ORGANISATIONS.

For further information on Public Health England, see the Public Health England website.