Children’s and Young People’s Health Services
(CYPHS) Secondary Uses Data Set
USER GUIDANCE
VERSION 1.0
Children’s and Young People’s Health Services (CYPHS) Secondary Uses Data Set
USER GUIDANCE DOCUMENT
Purpose of this document
The purpose of this document is to provide
guidance to users on the collection and
implementation of the Child Health Data Set
Version History
Ver Issue Date
Brief Summary of Change
0.1 7/10/2010 Initial Draft
0.2 29/10/2010 Updated to reference the inclusion of 6 optional data items
to cover safeguarding and child protection plan details.
03 10/11/2010 Updated to take account of revised title of the data set,
namely Children’s and Young People’s Health Services
(CYPHS) Secondary Uses Data Set
Name
S Wise
S Wise
1.0
S Wise
9/12/2010
Renamed to Guidance (formally Human Behavioural,
Organisational and Technical Guide)
Technical guide removed, this will be a separate document
Amendments to Breastfeeding status
1.1 10/01/2011 Included 2 optional data items;
Local patient identifier
Organisation code (local patient identifier)
For more information on the
status of this document,
please see the covering letter
S Wise
S Wise
NHS Information Centre for Health and Social Care
1 Trevelyan Square
Boar Lane
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or contact:
Leeds
LS1 6AE
Tel: 0845 300 6016
E-mail: enquiries@ic.nhs.uk
Internet: www.ic.nhs.uk
NHSnet: nww.ic.nhs.uk
Date of Issue
07/01/2011
G:\DS\PR171 Child Health Dataset\Working\ISB\3 - Full
Reference
Standard Submission
© Copyright 2010, The NHS Information Centre for Health and Social Care. All Rights
reserved.
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Table of Contents
1
About the document .................................................................................................... 10
1.1
1.2
1.3
1.4
1.5
1.6
2
Information Standard ................................................................................................... 12
2.1
2.2
2.3
2.4
2.5
2.6
2.6.1
2.6.2
2.6.3
2.6.4
2.6.5
2.7
2.8
2.8.1
3
Key components of the information standard ................................................................. 12
Background ................................................................................................................... 12
Phased implementation approach ................................................................................. 12
Data Set Approval ......................................................................................................... 13
Purpose of the Data Set ................................................................................................ 13
Data set scope .............................................................................................................. 13
Output specification ................................................................................................................... 13
NHS and Private Service providers ........................................................................................... 13
Geographical boundary .............................................................................................................. 13
Nationality and children resident in other home countries. ........................................................ 14
Child Health Services. ................................................................................................................ 14
Out of Scope ................................................................................................................. 15
Reading the data set specification ................................................................................. 16
Data set specification ................................................................................................................. 16
Implementation Guidance ........................................................................................... 18
3.1
3.2
3.3
3.4
3.4.1
3.4.2
3.4.3
3.4.4
3.4.5
3.4.6
3.4.7
3.4.8
4
Purpose of document .................................................................................................... 10
In scope......................................................................................................................... 10
Out of scope .................................................................................................................. 10
Target audience ............................................................................................................ 11
Who has developed this guideline ................................................................................. 11
Schedule for updating this document ............................................................................. 11
Data users ..................................................................................................................... 18
Primary Users................................................................................................................ 18
Secondary users............................................................................................................ 18
Care pathway ................................................................................................................ 19
Personal and Demographic ....................................................................................................... 20
Social and Personal Circumstances .......................................................................................... 21
Relationships & household ........................................................................................................ 21
Breastfeeding and Nutrition ....................................................................................................... 22
Care Events and Screening Activity .......................................................................................... 22
Urgent care events ..................................................................................................................... 24
Inpatient ..................................................................................................................................... 24
Observations .............................................................................................................................. 25
Organisational Guidance ............................................................................................. 26
4.1
4.2
4.2.1
4.2.2
4.2.3
4.2.4
4.2.5
4.2.6
4.3
4.3.1
4.3.2
4.3.3
4.3.4
4.4
4.4.1
4.4.2
4.5
4.6
4.7
Resources and cost ....................................................................................................... 26
Information governance ................................................................................................. 26
Consent ...................................................................................................................................... 26
Measures to ensure privacy of patient level data ...................................................................... 27
Sensitive data items ................................................................................................................... 28
Access controls .......................................................................................................................... 28
Data retention ............................................................................................................................ 29
Compliance against statutory requirements .............................................................................. 29
Data quality ................................................................................................................... 29
Corporate data quality framework .............................................................................................. 29
Organisational and departmental objectives .............................................................................. 30
Timeliness .................................................................................................................................. 30
Local data validation .................................................................................................................. 30
Organisation and cultural considerations ....................................................................... 30
Organisational structures and processes .................................................................................. 30
Documentation of change .......................................................................................................... 31
Contractual issues for staff ............................................................................................ 31
Skill mix changes ........................................................................................................... 31
Training guidance .......................................................................................................... 32
5 Reporting Guidance .................................................................................................... 33
6 Maintenance................................................................................................................ 33
APPENDIX 1 – Data Set Specification Guidance .............................................................. 34
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Demographics .......................................................................................................................................... 37
Social and Personal Circumstances ........................................................................................................ 41
Relationships ........................................................................................................................................... 42
Breastfeeding and Nutrition ..................................................................................................................... 44
Immunisation ........................................................................................................................................... 46
Care Event ............................................................................................................................................... 48
Urgent Care Event ................................................................................................................................... 51
In Patient .................................................................................................................................................. 51
Observations ............................................................................................................................................ 54
Newborn Screening - Hearing ................................................................................................................. 54
Newborn 6 to 8 week screening .............................................................................................................. 56
Blood spot screening results ................................................................................................................... 57
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Abbrevations
Acronym
CAMHS
CDS
ChiMat
CQC
DCSF
DfES
DH
DSCN
EGR
HES
ICD
NHS CfH
NHS IC
ISB
ISN
NDS
NHS
NICE
NIGB
NIRS
CYPHSDS
NIGB
NNU
NSF
OPCS
PCT
RCOG
RCM
SHA
TCU
UK NSC
Description
Child and Adolescent Mental Health Services
Commissioning Data Set
Child and Maternal health Observatory
Care Quality Commission
Department for Children, Schools and Families
Department for Education and Skills
Department of Health
Data Set Change Notice
Expert Reference Group
Hospital Episode Statistics
International Statistical Classification of Diseases and Related Health
Problems
NHS Connecting for Health
NHS Information Centre for Health & Social Care
NHS Information Standards Board for Health and Social Care
Information Standards Notice
National Datasets Service
National Health Service
National Institute for Health and Clinical Excellence
National Information Governance Board for Health and Social Care
NHS Information Reporting Services
Children’s and Young People’s Health Services (CYPHS) Secondary
Uses Data Set
National Information Governance Board for health and social care
Neonatal Unit
National Service Framework
Office of Population Censuses and Surveys' Classification of Surgical
Operations
Primary Care Trust
Royal College of Obstetricians and Gynaecologists
Royal College of Midwives
Strategic Health Authority
Transitional Care Unit
UK National Screening Committee
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Glossary of terms
Term
Anonymisation
Description
A method applied to patient identifiable data items to protect the identity of
individuals. Under Anonymisation, patient identifiable data items are:


randomly encrypted and no keys retained, or
completely removed
Anonymised data cannot be linked with other data sets for the same
individual, nor can it be reversed and the identity of the individual ever
determined.
Care pathway area
Contracted service
provider
Data item
Data segment
Data set
Data set
specification
Note – anonymisation is different from pseudonymisation
A part or specific point of the pathway a child will pass through. The data
set has been split into a series of care pathway areas. A segment is part
of one care pathway area.
Service provider responsible for developing and maintaining the data
submission and data warehouse architecture for the Children's and Young
People's Health Services Data Set.
An individual component of a data set that will only hold one type of
information. A data item is unique within the data set and where it is
repeated over multiple segments, it is still considered as being unique
within the data set.
See segment.
See ‘data set specification’.
The data items within a data set and the logical groupings of the data
items. The data set specification defines each data item by specifying the:





Name
Description
Format
National code
National code description (i.e. values)
The additional areas of the specification (per data item) relates to:
 Repeating group
 Information requirement (purpose)
 Data dictionary element
 Mandatory / required / conditionally required / optional
 Input / derived
Within this document, the term ‘data set’ is used interchangeably with
‘data set specification’.
Data warehouse
One or more databases that hold the data set data.
Data set model
The logical grouping of data items within the data set. Currently the data
set model aligns with the data submission architecture, but this is not the
intended purpose of the model. The model is a logical representation so
is independent of any other models or architectures. Where the model
coincides or mirrors another architecture model, the data set model will
not be amended or updated if the architecture model changes.
Derived
Depending on the context, one of the following:
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Term
Description
 A data item that is calculated in the data warehouse from other data
items in the data set
 A value that can be attained from another data item (primarily because
the source data item holds a specific element of the required data).
File
In the context of the data submission architecture, a file consists of a file
header, segments and a file trailer that an NHS Service (trust) submits to
the data warehouse.
Flow
Submission of a file / data from an NHS Service (trust) to the data
warehouse.
Full data set
Group
See Reference Data Set
In the context of the data set specification, a group consists of multiple
data items that are related to a specific activity or an information collection
area. A group will be submitted as part of a segment so a group only
aligns to one segment.
Hospital Episode
Statistics
Hospital Episode Statistics (HES) is the national statistical data
warehouse for England of the care provided by NHS hospitals and for
NHS hospital patients treated elsewhere. HES is the data source for a
wide range of healthcare analysis for the NHS, Government and many
other organisations and individuals.
The Children’s and Young People’s Health Services (CYPHS) Secondary
Uses Data Set is a patient level output data set that delivers pre-defined
business & information requirements (IRs). It will be used for analysis and
reporting and is not a source / input / operational system. The original
CYPHS data set, consisted of over 300 data items following consultation
with the ERG this was refined to 149 data items. Following data discovery
and proof of concept testing the data set was further reduced to 69 items
plus 6 optional data items It is this subset that is referred to as the Phase
1 data set. The remainder, referred to as the Reference Data set, will not
be mandated via this standard.
Children’s and
Young People’s
Health Services
(CYPHS) Secondary
Uses Data Set
All relevant NHS Services will have to capture and submit data for the
phase 1 data items. In regards to the Reference Data Set there is no
mandated requirement to capture or submit the data. However, if services
wish to capture the data for local use, they may do so. It is likely that the
Reference data items will be part of any future phased implementation of
the CYPHS data set.
Note – where the document refers to CYPHS data set, it is referring to
the phase 1 data set (unless specified otherwise).
National data set
An ISB approved data set.
National Information
Governance Board
(NIGB)
Null
A body that provides leadership and promotes consistent standards for
information governance across health and social care.
Output data set
A list of data items trusts must submit to deliver this information standard.
An output data set does not define how systems should be modelled nor
what should be captured by NHS Services, but the data items that NHS
Services must submit.
A data item with no value (i.e. blank).
It is not necessary for source systems to capture data exactly as per the
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Term
Description
CYPHSDS. The source data just needs to be ‘mappable’ to the output
data set.
Patient level
Selection of data where each data item relates to a single patient (but not
necessarily the same patient).
Phase 1
The data items proposed for approval at full ISB submission within the
Children's and Young People's Health Services Data Set.
Pseudonymisation
A process whereby an algorithm is applied to a data item so that it loses
its original value and meaning. The original value is replaced by a
fictitious value so that any users looking at the data would not know what
the value represents.
Segment
Pre-defined groups of data items, from the Children's and Young People's
Health Services Data Set, for submission to the data warehouse (i.e. as a
subset of the Children's and Young People's Health Services Data Set).
Standard
The mandated standard as described by the Information Standards Notice
(ISN) (previously referred to as DSCNs). The standard explains:
 what data items should be submitted by NHS services, which in this
scenario, refers to the Children's and Young People's Health Services
Data Set
 how data items should be submitted to the NHS central data
warehouse
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1 About the document
1.1 Purpose of document
The purpose of this document is to introduce and describe:
 the Children's and Young People's Health Services (CYPHS) Secondary Uses information
standard
 key implications, to NHS Services (namely Child Health Services and Information Management
Services), of capturing and submitting data for the information standard
 the manner by which the information standard should be used and interpreted, by users,
system suppliers and other stakeholders.
The Children's and Young People's Health Services Secondary Uses data set is one of three
components of the “Maternity and Children’s Data Set”. The other two components are:


The Maternity Services Secondary Uses Data Set (MSDS) Secondary Uses Data Set
The Child and Adolescent Mental Health Services (CAMHS) Secondary Uses Data Set
This document ONLY refers to the CYPHS data set.
1.2 In scope
The scope of this document covers the following key guidance areas.
1. Information Standard
This Section describes the background, purpose and scope of the Information Standard.
2. Implementation Guidance
This section sets out how the data set should be implemented by NHS Trusts. The data set is not
a clinical standard so this section will not explain how local systems should be developed or
modelled to deliver the data set.
3. Organisational Guidance
This section sets out the business and strategic implications from implementing the information
standard. It specifically provides guidance on resource and training implications, information
governance, data quality and data location.
4. Reporting Guidance
This section presents a brief overview of the reporting framework. At present, the scope and
content of the reporting framework has not been confirmed.
5. Maintenance
This section describes how the data set is maintained after ISB approval. This includes the
process for requesting changes.
Note: The separate Technical Guidance covers details of the technical infrastructure established to
support the implementation of the data set. The focus is on technical issues surrounding data
collection, data submission / transfer and data repository. This document will act as a key guidance
for information management services within PCTs, Acute Trusts and appropriate system suppliers
1.3 Out of scope

Detailed justification or business case for the development of this information standard
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
The information standard development process

The implementation of the information standard within NHS organisations

Detail on the data warehouse architecture
1.4 Target audience
This document is targeted at:

Information Management departments in PCTs and NHS trusts who are responsible for the
maintenance and management of child health systems

Child Health Services personnel – clinical and administrative

Child Health system suppliers
Data users may also find it useful to review Appendix 1 of this document as it provides detailed
information of the specific data items that comprise the data set.
1.5 Who has developed this guideline
This guideline has been developed by the NHS Information Centre for Health & Social Care (NHS
IC) with support from the Child Health Expert Reference Group Chair. Members of the Group were
invited to review and provide input to the content and definition of the data set.
1.6 Schedule for updating this document
This guidance document will be reviewed on an annual basis and updated where necessary.
Changes to this document will not necessitate further approval from ISB, however, this is on the
understanding that the changes do not affect the scope of the Information Standard.
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2 Information Standard
2.1 Key components of the information standard
The information standard consists of the following key components:
1. Information Standards Notice
2. Formal Standard Specification
3. Business Requirements (BRs) for the full data set
4. Information Requirements (IRs) for the full data set
Note: The BRs and IRs relate to the full data set. The phase 1 data set will only deliver a
subset of the requirements.
5. Phase 1, patient level, data set
6. User Guidance Documentation for the phase 1 data set (which is this document)
7. Technical Guidance, which sets out details on how information is to be submitted to the centre.
2.2 Background
The Children’s and Young People’s Health Services Secondary Uses Data Set Information Standard is
an approved patient-level output standard intended for NHS children’s services in England. It forms
part of an overall maternity and children’s data set, which incorporates the following individual information
standards:



Maternity Services Secondary Uses Data Set
Children’s and Young People’s Health Services Secondary Uses Data Set
Child and Adolescent Mental Health Services Secondary Uses Data Set
Work on this data set began with the policy driver of the National Service Framework (NSF) for
Children, Young People and Maternity Services in 2004 and it remains aligned to the policy
direction set out in the NHS White Paper, Equity and excellence: liberating the NHS and more
recently in the Information Revolution consultation document which states that information should
be collected using consistent standards and should be used more effectively.
The development of the Children’s and Young People’s Health Services Secondary Uses Data Set was
overseen by a Data Set Expert Reference Group representing clinicians and nationally recognised
organisations.
2.3 Phased implementation approach
It was recognised that the full patient level CYPHS data set was too large for implementation in a
single release; therefore, the sponsor agreed to an incremental and phased implementation
approach. Consequently, the Child Health Expert Reference Group agreed a revised scope for the
initial implementation phase and identified a priority sub-set which formed the basis of the data
discovery exercise.
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Subsequent implementation phases to the initial phase 1 release have been planned but not
scheduled. All subsequent phases are subject to testing outcomes, funding and Information
Standards Board (ISB) approvals.
2.4 Data Set Approval
This standard has received assurances and approval from the following Governance
Organisations:
 Information Standards Board: ISB 0169
 Provisional support from National Information Governance Board and Ethics &
Confidentiality Committee (ECC) on 07/12/2010
 Review of Central Returns Steering Committee (ROCR): License The ROCR reference
number is: ROCR/OR/2082/001MAND.
2.5 Purpose of the Data Set
The maternity and children’s data set has been developed as a key driver to achieving better
outcomes of care for mother, babies and children by providing comparative, linked data that can be
used to plan and commission services.
It will for the first time:

Allow data to be linked so that vital information can be used to improve services

Improve accountability, making it easier for the public to access comparative
information to support them in making decisions about type and place of care

Record outcomes to contribute to clinical risk management and governance to reduce
litigation costs

Provide activity data on which to base mandatory tariffs for assessment based care and

Underpin the improvement of local information systems to meet data set standards.
2.6 Data set scope
2.6.1 Output specification
The CYPHS data set is an output data set. An output data set is a description of the data that
needs to be extracted. This is in contrast to an input dataset where the data items are described
from the viewpoint of how data should be input. In many cases, the output data item will be
identical to the input definition. However the two may differ both in terms of the format of the data
item and the range of values presented. In addition, the output dataset may include items that are
derived from the inputs, most commonly, this will include ‘Age at’ fields and patient demographics.
The data collection system may represent the data in a different manner or in more granularities;
however, providing the input data items can be mapped to the output dataset, the input source will
not require any modification.
2.6.2 NHS and Private Service providers
Generally, the CYPHS data set will capture information on a child’s encounters with NHS provided
services (including Foundation Trusts). Services provided by non-NHS organisations (e.g. private
clinics), including those through an NHS referral process, are outside the scope of the data set.
2.6.3 Geographical boundary
Irrespective of nationality, the CYPHS data set is only relevant for data subjects receiving care in
England. Services provided by neighbouring countries (such as Wales and Scotland), are outside
the scope of the CYPHS data set.
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2.6.4 Nationality and children resident in other home countries.
Non-English children who receive NHS care are within the scope of the data set. The nationality of
a data subject has no bearing on the data set scope. For children resident in Wales and treated in
England, the data submission process will be identical to that of children who are resident in
England. The NHS Number covers England and Wales so the NHS Number can be flowed for
Welsh children. Where the child is resident in Scotland, the NHS Trust will submit a null NHS
number but the NHS Number status indicator would be flowed with the 07 national code (i.e. Trace
not present and not required). The 07 code is used to indicate data subjects that do not possess a
NHS Number and it is not a requirement for them to have one. Refer to data set specification for
the NHS number status indicator data items.
2.6.5 Child Health Services.
The design of the child health data set reflects the need to capture data relating to child health
activity across the following health domains:

Universal services, principally with respect to ‘Early Years’ and the Child Health Promotion
Programme, but also opportunistic health promotion contacts throughout a child’s and
young person’s life. This will include the monitoring of immunisation coverage in relation to
major vaccine-preventable infectious diseases;
Hospital, community and primary care services for children and young people with acute or
time-limited illnesses. This will include monitoring and evaluating the uptake of services and
outcomes for disadvantaged children and young people.
Safeguarding, including both awareness of the social care needs of children and young
people, and activities to assess, review and manage their needs and care, in partnership
with social care agencies;
Services for children and young people with long term conditions, disabilities or complex
health needs, including palliative care and transition into adult services.



The initial implementation phase will focus on the first 2 domains with subsequent delivery
phases building on these plus including data to address the information requirements of the
domains 3 and 4.
The CYPHS data set will be populated with data based on contacts in GP Practices, community
(including home), acute and specialist hospital settings, including private care commissioned by
the NHS. However, in practice it is likely that the dataset will be extracted or derived from child
health systems managed by PCT’s and Acute NHS Trusts. Social care and education
organisations are not affected by this standard in terms of collecting data.
The data relates to all children and young people from birth up to the day before their
19th birthday, whether in specialist or generalist paediatric services or adult or non-age specific
services.
The outputs from the data set will address information requirements at both a national and local
level

At a national level: the Department of Health and other appropriate national information,
research and service planning organisations, eg The NHS IC, Care Quality Commission,
Public Health Observatories, will use the information generated using the standard.

At a local level: SHAs, PCTs and NHS Trusts will have data on local children’s and young
people’s health services based on this national standard. Managers, commissioners,
service and workforce planners, and clinical staff can analyse the information obtained
from the data. This information will also support commissioning, performance
management, planning of services, clinical audit and research, and will aid continuous
improvement to children’s and young people’s health services to meet local needs.
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2.7 Out of Scope
Operational and clinical data collection standards for primary use (statutory and routine clinical
data capture required for the care, assessment and treatment of patients) are outside the scope of
this information standard. As a secondary uses output data set, the standard is only intended for
central reporting, audit, analysis and research.
Whilst this information standard will provide details of what and how data should be submitted, it
does not exclusively stipulate any standard on the functionality or design of local IT systems. As
stated, it is an “Output Based Specification” intended to extract local information from clinical
systems.
Depending on local processes, information on Newborn Hearing Screening and Blood Spot Card
Investigation Results can be captured by Maternity or Child Health Services (Health Visitors). The
remit of this information standard only covers results captured within Child Health Services.
Therefore, activities undertaken by Maternity Services are out of scope. However, to ensure data
collected by Child Health Services is not omitted from any reporting framework, the data items on
newborn hearing and blood spot result have been repeated in both data sets.
The data submission file structure is designed to split the data submissions into business-process
supported groups of data (also known as “segments”) related to child health clinical activities and
care events. The information standard does not provide financial cover for local procurement to
support the transcription of paper records or purchase of IT systems to sustain the data
submission. Therefore, where data requirements in specific data segments are predominantly
recorded on paper and not transcribed to any electronic form, services are not required to make
submissions of those data segments in the first instance. However, organisations are encouraged
to make provision for IT solutions and SHOULD, at own cost, progress the
procurement/enhancement of electronic systems that meet this specification as early as possible.
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2.8 Reading the data set specification
2.8.1 Data set specification
Data Item
No
Data Item Name
Data
Format
17100010
NHS NUMBER
A number used to identify
a PATIENT uniquely within
the NHS in England and
Wales
n10
17100020
SEX (AT BIRTH)
Sex of child at birth
an1
item description
National
code
National code
definition
0
Not Known (not
recorded)
1
Male
2
Female
9
Not Specified
(indeterminate/ambig
uous)
Repeating
group
Information Requirement
(Purpose)
Data
Dictionary
element
Mandatory /
optional
Used to uniquely identify an
individual
NHS
NUMBER
M
Used to analyse data for
difference by gender
PERSON
GENDER
CODE
M
Data Item No
This represents a unique reference number across the 3 datasets (maternity CAMHS and child health)
Data Item Name
The unique title or name of the data item
Data Item Description
The description of the data item describes in detail what information the data item is requiring the user to capture
Format
The format of the data item expressed in data type and length
National Code
A list of national codes associated with a particular data item
National Code Definition
Corresponding list of definitions associated with the national code
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Repeating Group
To indicate whether the data item can be captured multiple times (repeating) as part of a specified group
Information Requirement (Purpose)
The information requirement/purpose of the data item, based on the Children’s Services Dataset Development
Information Requirements V1.3.
Data Dictionary Element
The associated NHS data dictionary element where applicable.
Mandatory: These data items MUST be reported. Failure to submit these items will result in the rejection of the
submission.
Mandatory/Optional
Required: These data items SHOULD be reported where they apply. Failure to submit these items will not result in
the rejection of the submission but may affect the derivation of national indicators or national analysis.
Optional: These data items MAY be submitted on an optional basis at the submitters discretion.
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3 Implementation Guidance
3.1 Data users
The data set is intended for secondary uses purposes rather than for the direct care of the
patient. Information captured for primary purposes will be extracted from existing Child Health
Systems where data is captured at a PCT and Patient Administrative Systems (PAS) for data
sourced within acute care. Data to support the CYPHS data set will not be taken directly from
systems hosted in primary care.
The Information Standard is not for use in clinical practice, and as such will be ‘invisible’ to a
clinician recording their activities and care. Rather, it will help to inform the development of
operational systems by defining the data items and values required for information purposes
that should be able to be extracted from those systems.
3.2 Primary Users
Healthcare Professionals: will be responsible for capturing information as part of the ongoing
care of the child i.e. for primary use purposes. These include the following groups:







GP Practices
Acute and specialist hospital settings
Health visitors
Community paediatrics and nursing,
Paediatric inpatients and outpatients,
Screening
Laboratory testing
Administrative Staff: at a PCT level, staff will be responsible for capturing information and
maintaining the child record for children registered within their geographic boundary. At an
Acute Trust level, staff will be responsible for capturing all inpatient and appointment activity
for children seen or admitted. It is important to stress that data to support the CYPHS data set
will be extracted from existing systems, there should be no additional data collection burden
placed on administrative staff.
Child Health Informatics Staff: will be responsible for the collation of information from a
range of disparate systems into the CYPHS data set and the submission to the central
warehouse. This will include ensuring completeness and data quality of the information within
the dataset.
3.3 Secondary users
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As previously highlighted, the purpose of this data set is to provide information for secondary
analysis and reporting. The data reports will not present patient level data. The numbers of
stakeholders with an interest in the data set are many; below is a description of the type of
stakeholders that will make use of the data set
At a national level:







Department of Health
Department for Education
The NHS Information Centre for Health and Social Care
NHS Commissioning Board
Care Quality Commission
Public Health Observatories (PHOs)
Voluntary Sector/Charities
The information captured through the dataset will support the following national activity:

monitoring the implementation and effectiveness of the NSF and other national
policy/legislation

policy development

performance analysis and benchmarking

national analysis and statistics i.e. activity

research and epidemiology
At a local level:

Primary Care Trusts (PCTs); GP Consortia

Strategic Health Authorities (SHAs)

Children’s Trusts

Local Authorities

Specialist Commissioners
When approved as an NHS Information Standard the following groups of people are likely to
analyse information captured through the dataset:

managers

commissioners

service and workforce planners

performance analysts

clinical staff
The CYPHS data set will also aid continuous improvement of Child Health Services to meet
local needs.
3.4 Care pathway
The scope of the dataset is comprehensive, covering the collection of data relating to all
children and young people from birth up to the day before their 19th birthday, whether in
specialist or generalist paediatric services or adult or non-age specific services.
With this in mind, the dataset is not formulated around a specific care pathway, rather it is
structured around a series of distinct pathways to cover care events; these include
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immunisation, screening and follow-up, acute illness and inpatients stays. In addition to these
pathways, much data is collected relating to social and personal circumstances, household
details and lifestyle observations. This information tends to be fairly static and thus cannot be
modelled as a care pathway.
The data items are grouped into a series of sections relevant to different areas of activity. At
the outset, a full CYPHS data set was specified; this comprised in excess of 320 data items.
Following extensive consultation with PCTs and some NHS Acute Trusts, this data set has
now been reduced to 77 priority, “phase 1” data items (including 8 optional items to capture
local patient identifiers, child protection plan and safeguarding details); this represents data
items that are known to be available from existing child health systems and where there will be
minimum burden placed on the current data collection process.
The data items in the phase 1 dataset are grouped in the following sections each section is
further developed below








Personal and Demographic
Social and Personal Circs
Relationships & Household
Breastfeeding & Nutrition
Care Event Generic Items and Screening Activity
Urgent Care Events
Inpatient
Observations
3.4.1 Personal and Demographic
The Personal and Demographics section details data items designed to capture information
on patient identifiers, demographic information, details of the child’s GP, and organisational
data. The demographic data can be used to analyse outcomes across different age groups
and geographic locations.
There are 14 phase 1 personal and demographic data items; they are
Global ID
Data Item Name
17100010
NHS NUMBER
17104300
NHS NUMBER(STATUS INDICATOR)
17100020
SEX (AT BIRTH)
17100030
DATE OF BIRTH
NEW
LOCAL PATIENT IDENTIFIER
NEW
ORGANISATION CODE (LOCAL PATIENT IDENTIFIER)
17100040
DATE AND TIME OF DEATH
17100080
POSTCODE (MAIN PERMANENT RESIDENCE)
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17100090
ORGANISATION CODE (PCT OF MAIN PERMANENT RESIDENCE)
17100180
REGISTERED GP PRACTICE
17100190
START DATE (REGISTERED GP PRACTICE)
17100200
END DATE (REGISTERED GP PRACTICE)
17100210
ORGANISATION CODE (PCT OF GP PRACTICE)
17100250
LANGUAGE NAME
3.4.2 Social and Personal Circumstances
The social and personal circumstances section gathers data relating to the child’s
background. Data is used to support information requirements relating to the monitoring of
services and comparison of outcomes for children who may have social care needs.
There are 10 phase 1 social and personal circumstance data items, of these, 5 are considered
to be optional data items as there is currently little evidence from the sites consulted to
indicate that the data is captured and maintained effectively. The 5 optional data items relate
to safeguarding concerns and child protection plan; these are the shaded items in the table.
Global ID
Data Item Name
17100410
ETHNICITY
17100470
ACCOMMODATION TYPE
17100550
LOOKED AFTER LEGAL STATUS
17100690
SPECIAL EDUCATIONAL NEED
17100700
SPECIAL EDUCATIONAL NEED TYPE
NEW
CHILD PROTECTION PLAN REASON
NEW
CHILD PROTECTION PLAN INDICATOR - DATE PLACED ON PLAN
NEW
CHILD PROTECTION PLAN - DATE REMOVED FROM PLAN
NEW
SAFEGUARDING CHILD CONCERN
NEW
SAFEGUARDING CHILD CONCERN REASON
3.4.3 Relationships & household
The purpose of this section is to capture relationship and household data cover a range of
observations relating to the parent(s) the child is associated with, such as the education level
of parents.
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In practice, much of this data such as smoking status, education level and details of parent
disabilities is not captured in systems hosted within the NHS, they are more likely to be found
Local Authority managed systems.
Consequently, for phase 1 only 3 data items will be collected; they are
Global ID
Data Item Name
17101210
RELATIONSHIP (MAIN CARER)
17101320
NHS NUMBER (MOTHER)
17104310
NHS NUMBER STATUS INDICATOR (MOTHER)
3.4.4 Breastfeeding and Nutrition
Breastfeeding data is captured to monitor breast feeding rates. The introduction of any nonbreast milk feed, even if this was only one feed for a baby who otherwise only has breast milk,
excludes them from the Exclusively Breast Milk Feeding category. It is expected that these
values will be captured at regular intervals as part of the periodic child health review
programme.
There are 2 phase 1 breastfeeding and nutrition data items; they are
Global ID
Data Item Name
17101340
BREASTFEEDING STATUS
17104440
OBSERVATION DATE (BREASTFEEDING STATUS)
3.4.5 Care Events and Screening Activity
This section relates to all care activity other than inpatient activity. The Care Events section
will capture high level details of a range of activities centred on the care contact service type.
Details are captured to show the type of care contact together with the service provided. This
includes clinic attendance, GP contacts and community care activity as well as some activity
managed by allied health professionals. The section will be used for a range of analyses
including the monitoring of waiting times from referral to appointment, whether or not urgent
care services were accessed. The data captured will be used to determine the range of family
support services taken up per family
In addition to this high level view, the section is designed to capture more detailed information
for a range of specific care events; specifically, these are data items relating to screening and
routine review events and any subsequent follow up. The section will also capture all
vaccination programme activity.
These data are used to support a range of analyses such as


To allow analysis of activities by time period at different points in the care activity
pathway
To allow analysis by organisation of services provided and activities undertaken
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To allow analysis of care activities by care setting
To allow calculation of distance from home or other address to centre
To allow analysis by follow up where the child was not brought to an appointment
There are 16 phase 1 care event data items, Consultation Medium Used is classed as an
optional data item for this release; they are
Global ID
Data Item Name
17101500
REFERRAL RECEIVED DATE
17101560
CARE ACTIVITY (IMMUNISATION)
17104320
CARE ACTIVITY (IMMUNISATION DATE)
17104330
CARE ACTIVITY (IMMUNISATION ORGANISATION CODE)
17101590
CARE ACTIVITY DATE
17104460
CARE CONTACT TYPE
17101630
CARE CONTACT SERVICE TYPE
17104470
CONSULTATION MEDIUM USED
17101640
ORGANISATION CODE
17101650
SITE CODE
17101660
LOCATION TYPE
17101670
LOCATION POSTCODE
17101690
ATTENDED OR DID NOT ATTEND
17101700
CARE ACTIVITY CHILD NOT BROUGHT FOLLOW UP INDICATOR
17101720
OUTCOME OF ATTENDANCE
17101740
CARE ACTIVITY INTERPRETER REQUIRED INDICATOR
In addition, 15 data items are included in phase 1 to cover screening activity
Global ID
Data Item Name
17104170
SCREENING OUTCOME NEWBORN HEARING SCREENING
17101800
REFERRAL DATE (NEWBORN HEARING AUDIOLOGY REFERRAL)
17101810
NEWBORN HEARING AUDIOLOGY TESTING OUTCOME
17104010
SCREENING DATE (6-8 WK PHYSICAL EXAMINATION)
17104050
GESTATIONAL AGE AT 6-8 WEEK PHYSICAL EXAMINATION
17104060
6-8 WEEK PHYSICAL EXAMINATION (HIPS)
17104070
6-8 WEEK PHYSICAL EXAMINATION (HEART)
17104080
6-8 WEEK PHYSICAL EXAMINATION (EYES)
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17104090
6-8 WEEK PHYSICAL EXAMINATION (TESTES)
17104110
6-8 WEEK (FEED TYPE)
17103300
BLOODSPOT RESULT (PKU)
17103380
BLOODSPOT RESULT (SCD)
17103430
BLOODSPOT RESULT (CF)
17103470
BLOODSPOT RESULT (CHT)
17103510
BLOODSPOT RESULT (MCADD)
3.4.6 Urgent care events
The Urgent Care Activity section will carry the details of any urgent care required by a child or
young person. The information will be used to analyse aspects of accidents and injuries.
There are 4 phase 1 urgent care event data items; they are
Global ID
Data Item Name
17102220
URGENT CARE SERVICE ACCESSED
17102240
DATE AND TIME URGENT CARE SERVICE ACCESSED
17102260
TYPE OF INCIDENT
17102310
TYPE OF INJURY
3.4.7 Inpatient
The Inpatient section of the data set specifies data items relating to all inpatient activity for the
child. The section will capture data relating to the admission and discharge of the child from
acute care. For each inpatient care spell, the primary and secondary diagnosis plus details of
any procedure performed will be recorded.
The inpatient information is likely to be captured by administrative staff at the Acute Trust
responsible for the inpatient activity. Access to this data at a PCT will be dependent on local
configuration and local agreement between the PCT and providers; it may be that the PCT
access inpatient data through the Hospital Episode Statistics (HES) data feed.
Inpatient data is captured to address information requirements relating to the quality of setting
and environment, specifically these are
 Proportion of children offered/taking up inpatient or home-based management on initial
diagnosis
 To monitor processes for inpatient care and the discharge from inpatient care
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There are 9 phase 1 inpatient data items; they are
Global ID
Data Item Name
17102460
ORGANISATION CODE (HOSPITAL ADMISSION)
17104480
HOSPITAL PROVIDER SPELL NUMBER
17102480
ADMISSION DATE
17102490
ADMISSION TIME
17102610
INPATIENT DISCHARGE DATE
17102670
PRIMARY DIAGNOSIS
17104450
SECONDARY DIAGNOSIS
17102700
DATE OF PROCEDURE
17102690
PROCEDURE CODE
3.4.8 Observations
The data items in Observations relate to a core subset of baseline clinical observations; these
include height, weight, body mass index, allergy recording, and domestic abuse observations.
For the phase 1 implementation only data items relating to the calculation of BMI will be
recommended. The majority of these values will be repeated and trended in the child health
record as part of the developmental checks undertaken throughout the childhood years.
There are 4 phase 1 observation; they are
Global ID
Data Item Name
17102850
OBSERVATION DATE TIME
17102860
OBSERVATION (WEIGHT)
17102870
OBSERVATION (HEIGHT)
17102880
OBSERVATION (BMI)
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4 Organisational Guidance
4.1 Resources and cost
The most cost efficient approach is likely to be one where data is recorded once, at source
and in an electronic system. Where data is recorded in an off line device such as laptop or
PDA and subsequently transferred into an IT system, the resource implications of this
additional step should also be considered.
The resource implications will vary depending on organisational processes. Where data is
initially captured on paper and subsequently transferred to an electronic system, the
implications will be far greater than processes where data is entered directly into an electronic
system. A further complication with the paper-to-IT process is of data accuracy, which may be
compromised as a result of data duplication. This may add additional data validation
implications to the data collection process.
All of the 69 mandated items that form the phase 1 data set are currently being processed in
at least one of the sites who have contributed to the data discovery and proof of concept
testing exercise. As they are routinely being captured there should be minimal extra time and
costs for sites capturing the data if systems have the capabilities.
4.2 Information governance
Guidance and technical support for data and information sharing at both an operational level
and for secondary uses exists nationally, for example The NHS Confidentiality Code of
Practice (2003) and the Caldicott Report (1997)1.
The National Information Governance Board for health and social care (NIGB)2 oversees the
Ethics and Confidentiality Committee (ECC) (formerly the Patient Information Advisory Group)
this standard is subject to approval by ECC for the collection, flow, storage and reporting of
data for this dataset, as it will require the transmission of patient identifiable data to the
Secondary Uses Service.
4.2.1 Consent
Explicit consent for the submissions of the CYPHS Data Set is not required as support for this
activity has been obtained under section 251 of the NHS Act 2006. However, all NHS Trusts
1
Both documents available from
http://www.dh.gov.uk/en/Managingyourorganisation/Informationpolicy/Patientconfidentialityandcaldicottguardian
s/DH_4084181
2
National Information Governance Board website at http://www.nigb.nhs.uk/
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MUST still ensure compliance with the fair processing requirement of the Data Protection Act
1998. To meet these requirements, NHS Trusts MUST make available information and
guidance to parents and children that their data may be used for secondary uses purposes
(such as service development analysis and national statistical research) and there MUST be a
mechanism for patients to ‘opt-out’ from such national data submissions, should they explicitly
decide to do so based on the information provided.
Where patients express the wish for their information not be used or disclosed, patients should
be informed of their right to opt-out. Where patients opt out, NHS Trusts MUST NOT include
any data segments relating to those patients as part of their data submission. The right to
cease processing is conditional upon a number of factors and not an automatic right.
Subject Access Request under Section 7 and Cease Data Process under Section 10 of the
Data Protection Act 1998 do not apply to this standard, as there are no intentions to store
patient identifiable data. However, where the parent or child expressively requests for the
information to stop flowing, NHS Trusts MUST comply with the request to meet the conditions
of approval under Section 251.
4.2.2 Measures to ensure privacy of patient level data
Using the Ethics and Confidentiality Committee’s categorisation of identifiable data items3 plus
data items on date & time of death, a small number of CYPHS data items are deemed
identifiable.
Within the central data warehouse, identifiable data items will either be pseudonymised4 or
used for derivation purposes only. Identifiable data items will not be made available via either
the reporting or the extraction tiers of the solution. Identifiable data items will be included in
the data validation error reports produced by the solution but these reports will only be
available to the submitting Trust in order that it can correct the errors in its submission.
The identifiable data items and their management are listed in the table below.
Identifiable data item
Management
NHS NUMBER
This will be pseudonymised by the solution and is
required for the purpose of linking data segments
for the child, so that an end-to-end picture is built
up for each child.
NHS NUMBER (MOTHER)
This will be pseudonymised by the solution and is
required for the purpose of linking the child’s
segments with those of the mother.
LOCAL PATIENT IDENTIFIER
This will be pseudonymised by the solution and is
required for the purpose of linking data segments in
instances where NHS Number is not provided.
DATE OF BIRTH
The Date of Birth will not be stored in the data
3
ECC - http://www.nigb.nhs.uk/ecc/eccfrequently
4
Pseudonymisation is a process where identifiable data items such as NHS Number are encrypted through a
standardised methodology so that data arriving from different Trusts and at different points in the care pathway can
be linked at a person level. Pseudonymised data items will not identify a person nor will the pseudonymisation key
be available to data users to allow them to reverse the encryption. The pseudonymisation key will be held securely
by the Data Controller (NHS Information Centre).
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Identifiable data item
Management
warehouse. The data item will be used to derive
the age at which specific events took place such as
age at admission.
POSTCODE (MAIN
PERMANENT ADDRESS)
The full postcode will not be stored in the data
warehouse. The data item will be used to derive
the lower level output area in order to enable
geographical analysis and reporting.
LOCAL PATIENT IDENTIFIER
This will be pseudonymised by the solution and is
required for the purpose of linking data segments
for a patient together (where NHS Number is not
provided).
DATE TIME OF DEATH
The Date of Death will not be stored in the data
warehouse. The data item will be used to derive
the age at death to enable demographic analysis
and reporting.
4.2.3 Sensitive data items
The ECC’s Database Monitoring Sub Group (DMSG) identified a small number of Hospital
Episode Statistics (HES) data items as sensitive. The CYPHS developers have used this
classification in order to identify sensitive data items in the CYPHS. These data items are
listed below:

Organisation code (GMP practice)

Admission Date / Time (when linked to Hospital provider spell )
Sensitive data items will only be reported at an aggregate level and will not be available for
extraction. Reporting on sensitive data items will be subject to the small numbers HES
Protocol5.
4.2.4 Access controls
Access to data will be limited to three classes of users.
Authorised Trust users will submit data files according to the provided schedule by logging
onto the Open Exeter Portal and selecting the upload option. They will also be able to access
any error reports for the data set that they are authorised to download, for their own Trust
only.
Authorised data users will log onto the Open Exeter portal to retrieve reports and extracts that
have been produced for them. There will be no ad hoc access to the data warehouse.
It will be necessary from time to time for SSD support staff to access all parts of the system in
order to resolve technical problems. This will include not only the data warehouse and data
set store which hold pseudonymised data, but also the error reports and submission file
queues which will hold fully identifiable data. This is normal practice for production systems
5
HES protocol for dissemination of data http://www.hesonline.nhs.uk/Ease/servlet/ContentServer?siteID=1937&categoryID=331
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and SSD have procedures for controlling access and mitigating the risk of unauthorised
patient information disclosure.
Data Capture
at Trusts
SSD support staff
need access to live data
to resolve technical
problems
Trusts submit data; in batch f iles,
rejected f iles are resent when
corrected
Datasets:
Maternity
Data Collection
Child Health
CAMHS
Data Collection
Portal
Validation reports
availability emailed to
Trusts
Trusts download their
own error reports
Field validation
Error Reporting
Pseudonymisation of
Patient Data
Record Linking
Dataset
Data Store
Data Warehousing
Updates sent on
a daily basis
Authorised Trust Users
log onto Portal to upload
their data submission
f iles and access their
own error reports
Data Warehouse
Reports and Extracts
Output Portal
Authorised Data Users
log onto Portal to access
only their own reports
and extracts
Data users download
reports and extracts
4.2.5 Data retention
Data will be stored in the data bases for 25 years, in line with policy stated in ‘Records
Management: NHS Code of Practice’ Part 26.
4.2.6 Compliance against statutory requirements
The national data set will meet all statutory responsibilities related to NIGB and Data
Protection Act 1998.
4.3 Data quality
4.3.1 Corporate data quality framework
Each organisation will have its own corporate framework for managing data quality. This is
likely to involve a number of components such as corporate leadership, organisational & local
data quality objectives and a performance management framework (which entails the review
of data quality objectives). The periodic review of data quality should incorporate the national
dataset.
6
Records Management NHS Code of Practice, Part 2, Annex D1 http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4131747
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At organisational, departmental and individual level, there is a requirement to ensure data
quality is reviewed. Examples are:
 Organisational - does the organisation have a corporate policy and objectives for
managing data? Is there a senior officer with overall responsibility on data quality?
 Team - are all staff aware of the purpose and importance of collecting data for the national
dataset? Are there sufficient resources available to continue data collection during staff
absences?
 At an individual level, do staff have sufficient time within the working day to collect the
data? Is there a need for additional training so staff can possess the skills to collect the
data?
Local checks and controls should be defined to ensure all submissions are accurate and
comprehensive, for instance, the results of all children receiving 6 – 8 week physical
examinations must be captured and submitted. The validation techniques referred to in the
data set documentation, only relate to the structure of the data and so only validate whether
the data items meet the specification outlined in the data set specification. At the centre, it will
not be possible to monitor the accuracy and completeness of data, these issues must be
addressed prior to submission.
4.3.2 Organisational and departmental objectives
In any organisation, resources will be deployed towards organisational and departmental
objectives. The organisation’s performance management framework will identify the extent to
which objective are met, and, where necessary, revised. Where data is used to monitor
progress towards objectives, there will be greater emphasis on collecting good quality data. It
may be necessary to embed the CYPHS data set objectives into the organisation’s
performance management framework (and therefore set local objectives) to ensure data is
collected in a reliable and timely manner.
4.3.3 Timeliness
Data should be entered in local systems and, in line with the submission schedule, submitted
accordingly so that the data set can deliver meaningful, relevant and timely reports for
stakeholders. Stakeholders may find it necessary to implement immediate improvement
actions, so any delays in data submissions may adversely affect clinical practice standards
and outcomes.
4.3.4 Local data validation
To minimise the burden on staff responsible for the collection and entry of data to support the
CYPHS data set, organisations should adopt local validation measures that will facilitate the
capture of good quality data. This may be through periodic review of data reports (possibly by
‘exception reporting’) or by the implementation of locally defined rules (where this is possible).
For effective clinical practice, good quality data is the backbone, so for this purpose rather
than the data set, trusts should deploy local validation measures.
4.4 Organisation and cultural considerations
4.4.1 Organisational structures and processes
The structure and processes of each NHS organisation, as well as the departmental areas
covering the national data set, will vary and, to a certain extent, depend on the focus on IT,
informatics and organisational objectives. Some organisations will have well developed
processes and systems that, with minimum effort, will accommodate the data set. There will
be other organisations where processes and systems are fairly minimal or in their infancy and
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will therefore require significant changes. Where this is the case, organisations may choose
to make the implementation of this information standard a short / medium term priority to
ensure sufficient resources are deployed in this area. Furthermore, the implementation of a
new or reengineered process may be more successful if organisations use peers to identify
and adopt areas of good practice.
4.4.2 Documentation of change
Where a new process for data capture is developed or changes made to existing processes,
documentation may assist in developing efficient processes. This can also provide continuity
to the data collection process during periods of staff absences and personnel changes.
4.5 Contractual issues for staff
There should be no conflicts or issues with regards to staff contracts under Agenda for
Change and the NHS Key Skills Framework as the standard does not introduce new
processes for data collection.
4.6 Skill mix changes
With the implementation of the CYPHS data set, there may be some minor implications on
skill changes and training, particularly for administration personnel, Informatics personnel and
IT services. The changes will include technical and soft skill changes.
Technical skills may include:
 data input training
 using new technologies such as hand held devices
 using new application modules
 uploading data from remote devices to Trust network / system
Soft skills may include:
 interpersonal and communication skills in asking sensitive questions on areas such as
domestic abuse, mental health, sexual health and sexual orientation
Where services use paper systems to capture data, administration personnel may be
responsible for transcribing to an electronic system. Skills in using new IT applications may
be required.
The CYPHS data set covers multiple services such as immunisation, inpatients, screening,
and community care events. It is likely that this will cover a range of electronic systems in
some cases. Lessons learned from the testing stage of the data set development process
demonstrated that the most efficient method of meeting the data set, for organisations that
capture data in multiple systems, is to feed the data in a local data warehouse so that data
could be reused. The information standard does not stipulate how trusts should implement
the data set so this is in no way a requirement of the information standard, but purely a
suggestion.
From an IT or Information Management Service perspective, skills may be required in

developing and maintaining a local data warehouse may be required

creating uni or bi-directional interfaces from one system to another
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4.7 Training guidance
The implementation of the data set does not create a training need for clinicians or
administrative personnel responsible for the maintenance of the data set. There may be a
training requirement for a Trust’s Informatics Directorate to create and submit the periodic
interchange. For this purpose, NHS Trusts should review the CYPHS Technical Guidance.
This Information Standard dictates that NHS Trusts must capture information in an electronic
form. The implementation of this Information Standard is not supported by any local funding
so there is no obligation on Trusts to upgrade or procure systems. However, if an
organisation does decide to make changes to their data collection framework, sufficient
training and support (e.g. system manual) should be provided so that users utilise systems in
an effective manner.
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5 Reporting Guidance
It is intended that reports and extracts will be developed during the implementation stage
based on links to related data sets for Maternity Services and Child & Adolescent Mental
Health Services.
It is intended that a suite of standard reports will be available to submitting services through
the central data warehousing solution. Ad hoc requests for reports will be processed by the
NHS Information Centre. Reports will also be published in the public domain, for example
through the Department of Health or NHS Information Centre web sites.
6 Maintenance
Following approval as a Full Operational Standard, the data set will be transferred into the
National Datasets Service Maintenance Function. The Data Set Maintenance Function will be
responsible for ensuring that the Information Standard continues to reflect changes to
priorities, policy, practice and/or underlying classifications thus remaining ‘fit of purpose’.
The scope of the maintenance process covers:
 Management of change requests from users and stakeholders;
 Specification of changes to the data set in response to changes in policy, practice,
coding and classifications;
 The process for authorisation and approval of changes to data set items, including
obtaining ISB Standard Change Approval
 Undertaking periodic reviews of the data set including data items, definitions and data
values
Dissemination of approved changes to data set users and stakeholders, once approved, will
be issued in the form of ISN by ISB (ISNs were previously referred to as Data Set Change
Notices - DSCNs).
A completed Data Set Change Request Template outlining any proposed changes to the
Children's and Young People's Health Services Data Set should be submitted to The NHS
Information Centre enquiries@ic.nhs.uk (please include FAO Children's and Young People's
Health Services Data Set in the subject line).
Each change request should be supported by a valid business requirement i.e. what change is
needed, justification (i.e. why is it needed) and also any associated timescales.
Any change requests will be considered and agreed by the sponsor prior to submission to the
NHS Information Standards Board (ISB) for formal approval and the publication of a ISN. The
ISN will inform the NHS and systems suppliers of the changes and timescales.
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APPENDIX 1 – Data Set Specification Guidance
Purpose of document
The purpose of this Appendix is to provide additional information on the composition and
definition of the phase 1 CYPHS data set.
The CYPHS data set has been designed to represent the different elements of CYPHS care
pathway. This is a logical organisation of items to aid reference and is not a structure for a
technical implementation of the Data Set or any form of database. The sections of the
CYPHS data set are:
Demographics
 NHS Number
 NHS Number (Status Indicator)
 Sex (At Birth)
 Date Of Birth
 Date And Time Of Death
 Postcode (Main Permanent Residence)
 Organisation Code (PCT Of Main Permanent Residence)
 Registered GP Practice
 Start Date (Registered GP Practice)
 End Date (Registered GP Practice)
 Organisation Code (PCT of GP Practice)
 Language Name
Social and Personal Circumstances
 Ethnicity
 Accommodation Type
 Looked After Child Indicator
 Special Educational Need
 Special Educational Need Type
 Child protection plan reason (optional)
 Child protection plan indicator - date placed on plan (optional)
 Child protection plan - date removed from plan (optional)
 Safeguarding child concern (optional)
 Safeguarding child concern reason (optional)
Relationships
 Relationship (Main Carer)
 NHS Number (Mother)
 NHS Number Status Indicator (Mother)
Breastfeeding and Nutrition
 Breastfeeding Status
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
Observation Date (Breastfeeding Status)
Immunisation
 Care Activity (Immunisation Date)
 Care Activity (Immunisation Organisation Code)
 Care Activity (Immunisation)
Care Event
 Care Contact Type
 Care Contact Service Type
 Consultation Medium Used (optional)
 Referral Received Date
 Care Activity Date
 Organisation Code
 Site Code
 Location Type
 Location Postcode
 Attended or Did Not Attend
 Care Activity Child Not Brought Follow Up
 Outcome Of Attendance
 Is Interpreter Required Indicator
Urgent Care Event
 Urgent Care Service Accessed
 Date And Time Urgent Care Service Accessed
 Type Of Incident
 Type Of Injury
In Patient
 Organisation Code (Hospital Admission)
 Hospital Provider Spell Number
 Admission Date
 Admission Time
 Inpatient Discharge Date
 Primary Diagnosis
 Secondary Diagnosis
 Procedure Code
 Date Of Procedure
Observations
 Observation Date Time
 Observation (Weight)
 Observation (Height)
 Observation (Bmi)
Newborn Screening - Hearing
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


Screening Outcome Newborn Hearing Screening
Referral Date (Newborn Hearing Audiology Referral)
Newborn Hearing Audiology Testing Outcome
Newborn - 6-8 Week Screening
 Screening Date (6-8 Wk Physical Examination)
 Gestational Age At 6-8 Week Physical Examination
 6-8 Week Physical Examination (Hips)
 6-8 Week Physical Examination (Heart)
 6-8 Week Physical Examination (Eyes)
 6-8 Week Physical Examination (Testes)
 6-8 Week (Feed Type)
Blood spot screening results
 Blood spot Result (PKU)
 Blood spot Result (SCD)
 Blood spot Result (CF)
 Blood spot Result (CHT)
 Blood spot Result (MCADD)
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Demographics
Demographics
Description
The collection of these data items can be used to analyse outcomes across different
ethnic groups and age bands, age groups and geographic locations.
It is likely that much of the data items specified within this section will be gathered at
the point of registration with a GP Practice. The data will be periodically updated and
checked at appropriate intervals.
The key purpose of the demographic section is to uniquely identify the child’s
healthcare activity over time, more specifically; the data will be used to
 calculate age at events
 act as a basis for analysis by geographical areas, such as PCT and electoral
ward
 identify PCT and registration with a GP.
Submission Requirements
Trusts must submit the most up to date demographic details for each reporting period.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17100010
NHS NUMBER
The number used to identify the client
uniquely within the NHS.
n10
17104300
NHS NUMBER
STATUS
INDICATOR
This will be derived by your system when
capturing NHS Number.
n2
17100080
POSTCODE (MAIN
PERMANENT
ADDRESS)
This is the postcode of the child’s main
permanent residence
an8 (max)
17100030
DATE OF BIRTH
The date on which the child was born or is
officially deemed to have been born.
an10
17104540
LOCAL PATIENT
This is a number used to identify a patient
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IDENTIFIER
uniquely within a Health Care Provider. It
may be different from the Patient’s
Casenote number and may be assigned
automatically by the computer system.
Note: this data item is currently optional.
17104550
ORGANISATION
CODE (LOCAL
PATIENT
IDENTIFIER)
This is the organisation code of the
organisation that assigned the local
patient identifier
17100040
DATE AND TIME
OF DEATH
The date on which the child died or is
officially deemed to have died.
an19
YYYY-MMDDThh:mm
:ss
17100020
SEX (AT BIRTH)
The current gender of the client. The
classification is phenotypical rather than
genotypical i.e. it does not provide codes
for medical or scientific purposes.
n1
17100410
ETHNICITY
This is the ethnicity of the child or young
person, as specified by the child or young
person (or his/her parents/carers).
an2
Note: this data item is currently optional.
The information recorded about ethnic
categories must be obtained by asking the
child or young person (or his/her
parents/carers).
17100180
REGISTERED GP
PRACTICE
The General Medical Practice code where
the client is registered.
an6
17100190
START DATE
(REGISTERED GP
PRACTICE)
The date on which the child was
registered with the General Medical
Practitioner Practice.
An10
17100200
END DATE
The date on which the child ceased to
be registered with the General Medical
Practitioner Practice.
An10
ORGANISATION
CODE (PCT OF GP
PRACTICE)
This represents the code of the PCT of
the child’s registered GP Practice.
An3
ORGANISATION
CODE (PCT OF
MAIN
PERMANENT
RESIDENCE)
This represents the code of the PCT
derived from the postcode of the child’s
usual address.
(REGISTERED GP
PRACTICE)
17100210
17100090
The PCT may or may not be the same
as the PCT of the child’s main
residence.
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17100250
LANGUAGE NAME
A classification of a Language used by the
child.
An3
Note - This is the preferred language of
the child. The valueset is aligned with the
data dictionary Language Classification
Code
Additional Guidance on Demographics
Sex at Birth
This data item corresponds to the data dictionary item PERSON GENDER CODE
The [0] Not Known national code means that the sex of the client has not been recorded.
The [9] Not Specified national code means indeterminate i.e. unable to be classified as either
male or female.
Ethnicity
The [Z] Not Stated national code should only be used where the client has been asked and
has declined to provide their ethnic category because of refusal or the inability to choose.
The [99] Not Known national code should be used where the client has not been asked or
where the client was not in a suitable condition to be asked.
Post code (main permanent residence)
If a woman has no fixed the NHS service will submit ZZ99 3VZ7.
For overseas visitors, the POSTCODE OF USUAL ADDRESS data item will be in format ZZ99
xxZ. xx denotes the country pseudo postcode, which are available from:
http://nww.connectingforhealth.nhs.uk/ods/downloads/officenatstats
Examples of pseudo country postcodes (which include the top 14 nationalities in UK) are:
7
Post code description from NHS Data Dictionary -http://www.datadictionary.nhs.uk/data_dictionary/
data_field_notes/p/plan/postcode_of_usual_address_de.asp?shownav=1
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ZZ99 1WZ – Scotland
ZZ99 3GZ – Wales
ZZ99 2WZ – Northern Ireland
ZZ99 3AZ – Republic of Ireland
ZZ99 4GZ – France
ZZ99 4QZ – Germany
ZZ99 4LZ - Italy
ZZ99 4JZ – Portugal
ZZ99 4YZ – Poland
ZZ99 6CZ – India
ZZ99 9NZ – Pakistan
ZZ99 9JZ – China
ZZ99 7AZ – United States of America
ZZ99 8FZ – South Africa
ZZ99 5FZ – Nigeria
ZZ99 6GZ – Australia
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Social and Personal Circumstances
Social and Personal Circumstances
Description
The social and personal circumstances section gathers data relating to the child’s
background. Data is used to support information requirements relating to the
monitoring of services and comparison of outcomes for children who may have social
care needs.
Submission Requirements
Trusts must submit the most up to date details for each reporting period.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17100410
ETHNICITY
This is the ethnicity of the child, as specified
by the child (or his/her parents/carers).
an2
The information recorded about ethnic
categories must be obtained by asking the
child or young person (or his/her
parents/carers).
17100470
ACCOMMODATION
TYPE
The type of accommodation in which
the child/young person live in. This is a
hierarchical list of values which may be
captured either at the high/heading level
e.g. [HM00] ‘Homeless’ or the lower
more detailed level e.g. [HM04] ‘Sofa
surfing’ depending on local
arrangements.
an4
17100550
LOOKED AFTER
CHILD INDICATOR
An explicit indicator that the child is in local
authority care.
an1
17100690
SPECIAL
EDUCATIONAL NEED
To identify where a Local Education
Authority has issued a special educational
need
a1
17100700
SPECIAL
EDUCATIONAL NEED
The type of special educational need(s)
cited by the Local Education Authority
an2
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TYPE
17104490
CHILD PROTECTION
PLAN REASON
Whether or not the child/young person is
subject to an active child protection plan.
The Child Protection Plan is a multi-agency
plan formulated by children's social care to
ensure that children who are at continuing
risk of harm are protected. Its aim is to
facilitate and make explicit a co-ordinated
approach to the protection from further
harm of each child.
an2
Note: this data item is currently optional.
17104500
17104510
17104520
CHILD PROTECTION
PLAN INDICATOR DATE PLACED ON
PLAN
The date on which a child / young person is
placed on a child protection plan
CHILD PROTECTION
PLAN - DATE
REMOVED FROM
PLAN
The date on which a child / young person is
removed from a child protection plan
SAFEGUARDING
CHILD CONCERN
To record if there are any safeguarding
concerns
an10
Note: this data item is currently optional.
an10
Note: this data item is currently optional.
an2
Note: this data item is currently optional.
17104530
SAFEGUARDING
CHILD CONCERN
REASON
To record the type of safeguarding concern
an2
Note: this data item is currently optional.
Additional Guidance on Social and Personal circumstances
Looked After Child Indicator
Where it is relevant to collect information on whether the child or young person is in local
authority care either [N] No or [Y] Yes should be recorded. If information is required about
whether a child or young person is in local authority care but either it is not stated or disclosed
at a contact then [X] Not Known should be recorded.
Relationships
Relationships
Description
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The items in this section will be asked and recorded as part of Early Years
assessments, but may be updated at various points when a child or young person is
being assessed at any point.
Details of the mother’s NHS number are required to link with Maternity Dataset to
allow comparison of long term outcomes for children according to circumstances
during pregnancy and birth
Submission Requirements
Trusts must submit the most up to date details for each reporting period.
Data Items
Global ID
17101210
CYPHS Data Item
Name
Description
Format
RELATIONSHIP
(MAIN CARER)
The relationship between the child and the
person(s) who undertake the main caring
role.
an3
It is designed to capture who has parental
responsibility for the child, that is who can
give consent on behalf of the child
The data item will allow for the selection of
one or more values
17101320
NHS NUMBER
(MOTHER)
The number used to identify the mother
uniquely within the NHS.
n10
17104310
NHS NUMBER
STATUS
INDICATOR
(MOTHER)
This will be derived by your system when
capturing NHS Number.
n2
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Breastfeeding and Nutrition
Breastfeeding and Nutrition
Description
Breastfeeding data is captured to monitor breast feeding rates. The introduction of
any non-breast milk feed, even if this was only one feed for a baby who otherwise
only has breast milk, excludes them from the ‘Exclusive breastfeeding’ category.
It is expected that breast feeding status will be captured as part of the routine child
review programme
Submission Requirements
Trusts must submit this data when available.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17101340
BREASTFEEDING
STATUS
This is the type of feed a baby is receiving
an2
17101320
OBSERVATION
DATE
(BREASTFEEDING
STATUS)
Date the breastfeeding status was
observed.
an10
Additional Guidance on Breastfeeding and Nutrition
Breastfeeding status will be captured at a number of points during the child’s first year, these
include



at discharge
as part of the primary course of immunisation (8, 12, 16 weeks)
as part of the new baby review (normally between 10 and 14 days) plus the 6-8 week
review
Breastfeeding status will normally be captured by a member of health visiting team; normally a
public health nurse or health visitor.
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Definitions
Exclusively Breast Milk Feeding
The child is receiving only breast milk from his/her mother, or expressed breast milk, and no
other liquids or solids.
Partially Breast Milk Feeding
Partial breastfeeding refers to a situation where the baby is receiving some breast milk by any
method, but is also being given other food or food-based fluids, such as formula milk or
weaning foods.
No Breast Milk Feeding at all
The child receives no breast milk at all.
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Immunisation
Immunisation
Description
Immunisation activity will be recorded in line with the latest version of the
Immunisation Against Infectious Disease schedule (the green book).
Submission Requirements
Trusts should submit details of all immunisations for the reporting period.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17101560
CARE ACTIVITY
(IMMUNISATION)
Details of the immunisation given. The
latest immunisation schedule is presented
below.
an3
17104320
CARE ACTIVITY
(IMMUNISATION
DATE)
The date on which the immunisation was
carried out
an10
17104330
CARE ACTIVITY
(IMMUNISATION
ORGANISATION
CODE)
The organisation code of the site
performing the immunisation
an5
Additional Guidance on Immunisation
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Note
The CARE ACTIVITY (IMMUNISATION) value set lists each type of immunisation and booster
immunisation separately.
Therefore in the case of value 09 PCV – Pneumococcal, this will be selected on 3 occasions
to take account of the 8 week, 16 week and 13 month immunisations.
Care Event
Care Event
Description
The Care Events section will capture high level details of a range of activities centred
on the care contact service and care contact type; this covers contacts such as clinic
attendance, GP contacts and community care activity as well as some activity
managed by allied health professionals.
The section will be used for a range of analyses including the monitoring of waiting
times from referral to appointment, whether or not urgent care services were
accessed. The data captured will be used to determine the range of family support
services taken up per family
Note: This section does not include inpatient activity; see section 3.1.8 for a
description of the inpatient data items.
Submission Requirements
Trusts should aim to submit details of all care contacts for each reporting period.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17104460
CARE CONTACT
TYPE
This field relates to the type of contact or
setting in which the activity took place. This
includes instances where the child may or
may not be present.
An2
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17101630
CARE CONTACT
SERVICE TYPE
The type of service/specialty/sub-specialty
providing the care contact
An2
17104470
CONSULTATION
MEDIUM USED
Identifies the communication mechanism
used to relay information between the care
professional and the child / young person
who is the subject of the consultation,
during a care contact.
An2
Telephone contacts solely for informing the
child / young person of results are excluded.
Note: this data item is currently optional.
17101500
REFERRAL
RECEIVED DATE
To carry the details of the date a referral
made on behalf of the child was received by
the provider of the service.
an10
17101590
CARE ACTIVITY
DATE
The date associated with the care activity.
This will be the date on which the actual
activity took place.
an10
17101640
ORGANISATION
CODE
This is the organisation code of the
organisation acting as a health care
provider.
an5
17101650
SITE CODE
The site code refers to the site where the
patient was treated. This should always
identify an organisation site where activity
managed by the treating organisation takes
place.
an5
17101660
LOCATION TYPE
The location type refers to the type of
location where the child is seen or where
services are provided or from which
requests for services are sent.
an2
17101670
LOCATION
POSTCODE
This is the postcode of the site where the
care event took place.
an8 (max)
NEW
ATTENDED OR
DID NOT ATTEND
This is to identify whether the patient
attended or did not attend their
appointment.
an1
17101700
CARE ACTIVITY
CHILD NOT
BROUGHT
FOLLOW UP
An indicator to record if follow up action was
taken where a child was not brought.
an2
17101720
OUTCOME OF
ATTENDANCE
Refers to the outcome of an appointment
an2
17101740
IS INTERPRETER
REQUIRED
INDICATOR
A flag to indicate if the child requires the
support of an interpreter
an2
Additional Guidance on Care Events
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Organisation Code and Site Code
Each organisation has a unique organisation code. However, where an organisation has more
than one site from which it provides services then each site is uniquely identified.
The site code refers to the site where the patient was treated. This should always identify an
organisation site where activity managed by the treating organisation takes place, i.e. it should
enable the treating organisation to be identified.
The organisation site code contains the first 3 digits of the organisation code with the last two
digits being the site identifier.
Example:
RA7
organisation code.
RA701
organisation site code of the first identified organisation site within the organisation
RA702
organisation site code of the second identified organisation site within the
organisation
Care Contact Type
A contact with a School Nurse would be classified as 05 - Nurse Contact, all other School
Contacts would be classified as 13 - School Contact.
Contact with a Health Visitor would be classified as 10 - Health Visitor Contact, all other
Midwife or Nurse contacts would be classified as 03 - Midwife contact or 05 - Nurse contact
respectively.
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Urgent Care Event
Urgent Care Event
Description
The section will capture details of any urgent care required by a child or young
person. The purpose of the data is to analyse aspects of accidents and injuries
Submission Requirements
Trusts must submit the most up to date details for each reporting period.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17102220
URGENT CARE
SERVICE
ACCESSED
To record attendance at an emergency or
urgent care facility.
an2
17102240
DATE AND TIME
URGENT CARE
SERVICE
ACCESSED
Date and time of attendance
an10
17102260
TYPE OF
INCIDENT
A classification of the type of accident in
which an injury was sustained
an2
17102310
TYPE OF INJURY
The principal type of injury sustained. This
data item to be completed where Type of
Incident has resulted in an injury.
an2
In Patient
In Patient
Description
The Inpatient section of the data set specifies data items relating to all inpatient
activity for the child. The section will capture data relating to the admission and
discharge of the child from acute care. For each inpatient care spell, the primary
diagnosis plus details of any procedure performed will be recorded. Note, only the
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primary procedure and diagnosis will be captured.
The inpatient information is likely to be captured by administrative staff at the Acute
Trust responsible for the inpatient activity. Access to this data at a PCT will be
dependent on local configuration and local agreement between the PCT and
providers; it may be that the PCT access inpatient data through the Hospital Episode
Statistics (HES) data feed.
Submission Requirements
This data should be submitted following a period of inpatient care
At present, it remains unclear if this data will be submitted directly by the organisation
responsible for providing the care (NHS Acute Trust) or provided by a link to
Northgate (HES). All the data required by this section is available from HES.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17102460
ORGANISATION
CODE (HOSPITAL
ADMISSION)
The organisation code of the location of
admittance.
an5
17104480
HOSPITAL
PROVIDER SPELL
NUMBER
The Provider Spell Number is the time the
child stays in one hospital provider, for
example, from admission to discharge. The
child will be using a bed that is managed by
one health care provider, and they may be
treated by one or more consultants.
an12
17102480
ADMISSION DATE
The date the child or young person was
admitted to hospital for an inpatient stay.
an10
17102490
ADMISSION TIME
The time the child or young person was
admitted to hospital for an inpatient stay.
an10
17102610
INPATIENT
DISCHARGE
DATE
The date that the child or young person was
discharge to hospital spell.
an10
17102670
PRIMARY
DIAGNOSIS (ICD)
This is the main condition that the child or
young person is being treated for.
an6
The diagnosis will be recorded using ICD-10
classification codes.
NEW
SECONDARY
DIAGNOSIS (ICD)
Record any diagnosis other than the main that
the child or young person is being treated for.
an6
The diagnosis will be recorded using ICD-10
classification codes.
Note – the secondary diagnosis field is a
repeating field
17102690
PROCEDURE
Where a procedure was undertaken, record
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CODE
the code of the procedure carried out.
Procedures should be classified where
possible using OPCS4 or other classification
codes approved centrally for mapping to
OPCS4 codes.
17102700
DATE OF
PROCEDURE
The date on which the procedure was carried
out on the child/young person
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Observations
Observations
Description
This segment captures information on the Body Mass Index (BMI) assessment.
The data will be used to produce BMI trend analysis. It is expected that these values
will be repeated and trended in the child health record as part of the developmental
checks undertaken throughout the childhood years.
BMI is calculated by dividing weight by height squared.
Submission Requirements
The data should be submitted periodically when available.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17102850
OBSERVATION
DATE TIME
The date and time on which the
observations was made
an19 YYYYMMDDThh:mm:s
s
17102860
OBSERVATION
(WEIGHT)
The weight in kilograms to 3 decimal
places of a child
n3.n3
17102870
OBSERVATION
(HEIGHT)
The height in metres to 2 decimal places
of a child/young person
n.nn
17102880
OBSERVATION
(BMI)
Body mass index of child
n3 nn.n
Newborn Screening - Hearing
Newborn Screening - Hearing
Description
The data items in this segment capture the outcome of the newborn hearing
screening. In addition, any follow up action resulting from screening results that are
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not cleared are captured. This includes details of further screening and whether or not
the child was referred for specialist opinion.
Details of the screening appointment are captured by the maternity system. The
purpose of the data is to monitor the outcomes for those babies referred from
Newborn Hearing Screening.
Submission Requirements
The data should be submitted periodically in line with child developmental checks.
Data Items
Global ID
CYPHS Data Item Name
Description
Format
17104170
SCREENING OUTCOME
NEWBORN HEARING
SCREENING
Outcome of newborn hearing
screening
an2
17101800
REFERRAL DATE
(NEWBORN HEARING
AUDIOLOGY REFERRAL)
The date on which a referral for
audiology testing was made
an10 ccyymm-dd
17101810
NEWBORN HEARING
AUDIOLOGY TESTING
OUTCOME
The outcome of audiology testing
an2
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Newborn 6 to 8 week screening
Newborn 6 to 8 week screening
Description
The data items in this section capture information on the detailed newborn physical
screening, as performed at 6 to 8 weeks. These examinations include a screening
examination to find those babies who may have a problem with their eyes, heart, hips
and, in boys, testicles.
Corresponding data on the outcome of the 72 hour physical screening checks will be
captured by the Maternity data set.
Submission Requirements
The data should be submitted periodically in line with child developmental checks.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17104010
SCREENING DATE
(6-8 WK PHYSICAL
EXAMINATION)
Date of 6-8 WK PHYSICAL
EXAMINATION
an10 ccyymm-dd
17104050
GESTATIONAL AGE
AT 6-8 WEEK
PHYSICAL
EXAMINATION
Gestational Age in weeks and days at
the time of the 6-8 week physical
examination, normally, this will be in the
range of 46-48 wks.
n3
Note this will be specified in terms of
number of days
17104060
6-8 WEEK
PHYSICAL
EXAMINATION
(HIPS)
Whether or not a problem was detected
or suspected with hips
an2
17104070
6-8 WEEK
PHYSICAL
EXAMINATION
(HEART)
Whether or not a problem was detected
or suspected with the heart
an2
17104080
6-8 WEEK
PHYSICAL
EXAMINATION
(EYES)
Whether or not a problem was detected
or suspected with the eyes
an2
17104090
6-8 WEEK
Whether or not a problem was detected
an2
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17104110
PHYSICAL
EXAMINATION
(TESTES)
or suspected with the testes
6-8 WEEK (FEED
TYPE)
The method of feeding the baby
recorded at 6-8 week physical
screening
an1
Additional Guidance on 6 – 8 week screening
The value list for the results of the physical examination is:




Satisfactory
Problem suspected
Problem identified
Not examined
It is understood that the Personal Child Health Record (or Red Book) records outcomes using
SPOTRN values (Satisfactory, Problem, Observation, Treatment, Refer, Not examined).
It was felt that in some instances, the SPOTRN coding scheme is not appropriate, as it
combines findings (problems, observations) with actions (treatment, refer). In addition, the
values are not mutually exclusive; an examination outcome could be classed as both Problem
and Refer.
The proposed value set meets the underlying information/business requirement (number of
babies with problems found at newborn physical screening examination) and is in line with the
values used in the maternity data set.
For sites who currently record results using SPOTRN coding, the following mapping is
proposed
SPOTRN Code
CYPHS Code
Satisfactory
Satisfactory
Problem
Problem Identified
Observation
Problem Suspected
Treatment
Problem Identified
Refer
Problem Suspected
Not Examined
Not Examined
Note – as the testes examination is irrelevant for girls, trusts will submit ‘Not examined’ for
data item Newborn physical examination (testes).
Blood spot screening results
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Blood spot screening results
Description
This segment captures data items on the results of blood spot screening for the five
conditions tested based on the newborn blood spot card. The five conditions tested
are as follows:





Phenylketonuria (PKU)
Sickle Cell Disease (SCD)
Cystic Fibrosis (CF)
Congenital Hypothryoidism (CHT)
Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD)
Where samples are re-taken on a new blood spot card, irrespective of the reason, all
data items will be repeated. Although repeats are likely to be performed for specific
conditions (e.g. PKU), only.
The national standards on blood spot screening are developed by UK National
Screening Committee (UK NSC) and are available from the following link:
http://newbornbloodspot.screening.nhs.uk/standards
Submission Requirements
The data should be submitted periodically in line with the recommendations of the UK
National Screening Committee.
Data Items
Global ID
CYPHS Data Item
Name
Description
Format
17103300
BLOODSPOT
RESULT (PKU)
Result of screening for PKU
an2
17103380
BLOODSPOT
RESULT (SCD)
Result of screening for SCD
an2
17103430
BLOODSPOT
RESULT (CF)
Result of screening for CF
an2
17103470
BLOODSPOT
RESULT (CHT)
Result of screening for CHT
an2
17103510
BLOODSPOT
RESULT (MCADD)
Result of screening for MCADD
an2
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Additional Guidance on blood spot screening results
The value list for the results of the physical examination is:









Specimen received in laboratory
Screening declined
Further sample required
Condition not suspected
Carrier
Carrier of other haemoglobin
Condition not suspected, other disorders follow up
Condition suspected
Not screened/screening incomplete
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