National Neonatal Data Set - Two Year Neonatal Outcomes Assessment

National Neonatal Data Set - Two Year Neonatal Outcomes Assessment

Overview

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:

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.

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.

Specification

TWO YEAR NEONATAL OUTCOMES ASSESSMENT
Mandation Child Demographics

To carry the Child's demographic details.One occurrence of this group is required.

R

NHS NUMBER

R

PSEUDONYMISED NHS NUMBER

R

NHS NUMBER STATUS INDICATOR CODE

R

COMMUNITY HEALTH INDEX NUMBER

R

PSEUDONYMISED COMMUNITY HEALTH INDEX NUMBER

R

HEALTH AND CARE NUMBER

R

PSEUDONYMISED HEALTH AND CARE NUMBER

M

BABY LOCAL PATIENT IDENTIFIER (NATIONAL NEONATAL DATA SET)

R

DELIVERY TIMESTAMP

R

YEAR AND MONTH OF BIRTH

R

ETHNIC CATEGORY (BABY)

P

ETHNIC CATEGORY 2021 (BABY)

M

ORGANISATION SITE IDENTIFIER (OF ACTUAL PLACE OF DELIVERY)

O

GESTATION LENGTH (AT DELIVERY)

O

GESTATION LENGTH (REMAINING DAYS AT DELIVERY)

R

PERSON STATED GENDER CODE

Or

PERSON GENOTYPIC SEX (NATIONAL NEONATAL DATA SET)

Mandation Two Year Assessment Administration

To carry administrative information relating to the Two Year Neonatal Outcomes Assessment.One occurrence of this group is required.

M

TWO YEAR NEONATAL OUTCOMES ASSESSMENT TIMESTAMP

R

NUMBER OF MINUTES (BIRTH TO EVENT)

R

TWO YEAR NEONATAL OUTCOMES ASSESSMENT YEAR AND MONTH

O

CARE PROFESSIONAL DESIGNATION (TWO YEAR NEONATAL OUTCOMES ASSESSMENT)

R

POSTCODE OF USUAL ADDRESS (AT TWO YEAR NEONATAL OUTCOMES ASSESSMENT)

R

LOWER LAYER SUPER OUTPUT AREA (PERSON RESIDENCE)

R

ORGANISATION SITE IDENTIFIER (OF TWO YEAR NEONATAL OUTCOMES ASSESSMENT)

R

TWO YEAR NEONATAL OUTCOMES ASSESSMENT NOT CARRIED OUT REASON

R

PERSON DEATH TIMESTAMP (POST DISCHARGE FROM NEONATAL CRITICAL CARE)

R

NUMBER OF MINUTES (BIRTH TO EVENT)

R

PERSON DEATH YEAR AND MONTH (POST DISCHARGE FROM NEONATAL CRITICAL CARE)

Mandation Coded Scored Assessments

To carry details of the SNOMED CT coded scores.Multiple occurrences of this group is required.

M

CODED ASSESSMENT TOOL TYPE (SNOMED CT)

M

PERSON SCORE

R

ASSESSMENT TOOL COMPLETION TIMESTAMP

R

NUMBER OF MINUTES (BIRTH TO EVENT)

R

ASSESSMENT TOOL COMPLETION YEAR AND MONTH

Mandation Coded Clinical Observations

To carry details of the SNOMED CT coded clinical observations.Multiple occurrences of this group is permitted.

M

CODED OBSERVATION (SNOMED CT)

R

OBSERVATION VALUE

R

UCUM UNIT OF MEASUREMENT

M

CODED OBSERVATION TIMESTAMP

R

NUMBER OF MINUTES (BIRTH TO EVENT)

R

CODED OBSERVATION YEAR AND MONTH

Mandation British Association for Neonatal Neurodevelopmental Follow-up (BANNFU) Additional Information

To carry additional information relating to British Association for Neonatal Neurodevelopmental Follow-up assessments.One occurrence of this group is permitted.

R

SPECIAL DIET DESCRIPTION

R

NEURODEVELOPMENTAL ASSESSMENT ALREADY TAKEN INDICATOR

R

NEURODEVELOPMENTAL ASSESSMENT TEST NAME

R

CHILD DIFFICULT TO TEST REASON

Multiple occurrences of this item are permitted

R

PATIENT DIAGNOSIS INDICATOR (CEREBRAL PALSY)

R

CEREBRAL PALSY TYPE (SNOMED CT)

R

DIAGNOSIS (ICD NEUROLOGICAL)

Multiple occurrences of this item are permitted

Also Known As

This data set is also known by these names:

Context Alias
Short name Two Year Neonatal Outcomes Assessment