National Diabetes Dataset Project
Diabetes Continuing Care
Reference Dataset
Guidance Document
(Relates to Dataset Version 1.0)
April 2005
Purpose of this document
This document provides further guidance
relating to the Diabetes Continuing Care
Reference Dataset.
VERSION HISTORY
Version
Draft V0.1
Date Issued
05/04/05
Owner’s Name
Brief Summary of Change
Draft V0.1
Maxine Reynolds
Distribution
On request
Author
Maxine Reynolds
Further copies from
Eleanor Bell
Health and Social Care Information Centre
Kings Court
The Broadway
Winchester, SO23 9BE
: eleanor.bell@ic.nhs.uk
E-mail
Date of issue
April 2005
Guidance Document - Diabetes Continuing Care Reference Dataset
CONTENTS
1. NAME OF STANDARD ................................................................................................ 4
2. BACKGROUND INFORMATION .............................................................................. 4
2.1
Relationship to the National Programme for IT .................................................... 4
2.2
Purpose .................................................................................................................. 5
2.4
Where it will be used / Who will use it ................................................................ 6
2.5
Use in routine practice ........................................................................................... 6
3. DETAILS OF THE SPECIFICATION ........................................................................ 7
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Guidance Document - Diabetes Continuing Care Reference Dataset
1. NAME OF STANDARD
The standard to which this guidance relates is called the Diabetes Continuing Care
Reference Dataset.
2. BACKGROUND INFORMATION
2.1
Relationship to the National Programme for IT
The Diabetes Dataset project is a strategic development based on the systems that will
incorporate the sharing of information between all health care service providers and
patients, across primary secondary and tertiary care. The format specified for each data
item is based on the output specifications related to secondary information
requirements. Associated with this is an underlying assumption that all data extracted
for secondary purposes will be derived from information recorded by the clinician, at
the point of care, and will not necessitate double recording.
This submission has been developed to support current systems used within the NHS.
Prior to the widespread implementation of NPfIT systems, the Diabetes Continuing
Care Reference Dataset only incorporates those data items that can be collected using
Read Code systems. This will facilitate implementation in the primary care sector at
the current point in time. In the short term some associated operational instantiations
(in particular NCASP) may extract outcome data from Hospital Episode Statistics
(HES). In these cases ICD10 or OPCS4 codes are also provided.
In the longer term all secondary information requirements will be extractable from the
point of care environment (or the NHS Care Record Service) in a Snomed CT format.
As all Read Codes and all ICD10/OPCS4 codes are included within the Snomed CT
vocabulary, the transition of this dataset to use in the NPfIT arena should be relatively
seamless. A full gap analysis for Snomed CT terms and codes has been requested from
the NHS Clinical Terminology Service.
Development has also considered alignment with NPfIT for all non clinical data items.
As the latter is still a developing area any related data items will not specify detail of
format and categories but will refer to the NHS Data Dictionary (NHS DD) and NPfIT
(HL7) messaging specifications for further information. This relates in particular to the
Demographic Data section. Currently, systems should utilise formats as specified
within the NHS DD - however as systems migrate to NPfIT specifications formats will
require conformance with the HL7 messaging standards. An example of this is the date
format which is currently held within the NHS DD as an e-Gif standard.
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2.2
Purpose
The Diabetes Continuing Care Reference Dataset is a common dataset developed to
enable local Diabetes Services, commissioning and planning agencies and national
bodies to monitor diabetes continuing care
Figure 1:
Diagram to summarise the prevention and management of diabetes 1.
(The Diabetes Continuing Care Reference Dataset refers to the Continuing Care
loop that applies to the whole of the diabetes population).
The Diabetes Continuing Care Reference Dataset is a fundamental dataset which will
support operational instantiations for specific purposes. Operational instantiations
currently include Diabetes National Audit (NCASP), the Diabetes chapter within the
new GMS Contract, the DiabetesE performance management tool, and the Diabetes
User Dataset (patient information).
It should be noted that while the fields of the Diabetes Continuing Care Reference
Dataset will normally be recorded within and collected from the diabetes care
record, the primary purpose of the dataset is not the direct clinical care of
patients.
2.3
Scope
The Diabetes Continuing Care Reference Dataset identifies:
1.
2.
3.
the standard data elements which satisfy the information requirements to
support the monitoring of current national diabetes continuing care guidelines;
data standards for the recording of each of these data elements; and
the appropriate coding mechanisms.
It does not constitute the patient record, nor does it constitute an exhaustive record of
the care process.
The scope of the dataset has been set to reflect the most recent policy directives in
relation to secondary information requirements. At a Diabetes Information Summit
1
http://www.publications.doh.gov.uk/nsf/diabetes/ch2/introduction.htm
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Guidance Document - Diabetes Continuing Care Reference Dataset
held in June 2004, the following work streams were put forward as the key
requirements for the national sharing of diabetes patient care information:
1) The GMS Contract (Diabetes Quality Indicators)
2) National Diabetes Audit (NCASP)
3) Better Metrics, Performance Indicators for Diabetes
4) Diabetes E, Performance Assessment Tool
5) National Screening Committee (NSC), Retinal Screening Programme
The Diabetes Continuing Care Reference Dataset will support operational instantiations
of the first four work streams specified above. A separate, but aligned, Diabetes Eye
Care Dataset has been developed, in conjunction with the National Retinal Screening
Programme, and it is the intention to submit this to ISB as an Operational Standard
following pilot. In addition there are a very small number of additional data items that
have been included in order to provide a balanced view of diabetes continuing care.
The scope of this fundamental dataset submission does not include patient
confidentiality. However it should be noted that any associated operational
instantiations would be required to provide guidance in relation to confidentiality,
and the use of patient data for secondary usages.
2.4
Where it will be used / Who will use it
The dataset will be used to support quality performance monitoring in all health care
settings where diabetes services are delivered.
2.5
Use in routine practice
The dataset is a reference dataset which will inform clinical record keeping so that
consistent data can be extracted as a byproduct of the patient care record and analysed
for secondary uses.
Consistency of data will allow information to be made available locally and nationally
to clinical governance leads and clinical audit managers for analysis, monitoring and
service planning.
It is not intended for the whole of the dataset to be collected or extracted at any one
time. Although much of the information is often collected at a Diabetes Annual
Review, this is not always the case and the dataset will allow healthcare staff to record
standardised information at the appropriate stage of the care pathway reached by the
patient.
Extraction of information for secondary purposes will be undertaken by the various
operational instantiations which the dataset has been developed to support. The
standard therefore does not include software tools to implement the dataset nor
messaging standards for electronic data sharing.
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3. DETAILS OF THE SPECIFICATION
The Diabetes Continuing Care Reference Dataset is presented as a Microsoft Excel
document. To facilitate use, columns can be hidden in order to display a preferred
view or a print format relevant to a particular user. Within the document different
dataset sections are displayed on separate worksheets (e.g. Demographic Data;
Diabetes Diagnosis Data; At Risk Data etc.). Each work sheet contains the same
headed columns with the exception of the Footnotes section.
The following guidance explains the content of each column:
Column A: DI No
Provides a reference number for the Data Item.
Column B: Data Item Name
Provides the Data Item name as held in the dataset – using commonly accepted
wording.
Column C: DD Element name
Provides the name of the Data Item* as specified in the NHS DD. These must
conform to the Generic Data Model underlying the Data Dictionary.
*NB: Within the NHS DD data items are commonly referred to as data elements.
Column D: DD Note
Provides further information regarding the modelling of the Data Item within the NHS
DD.
Column E: Description
Provides a definitional description of the Data Item.
Column F: Requirement
Provides the purpose for the Data Item in relation to the business requirement (i.e. the
reason why this information may need to be extracted / collected for secondary
purposes).
Column G: Codes and Classifications
Provides the predefined sets of permissible classifications and codes, and the format in
which the data should be extracted.
Column H: Footnote
Provides the number reference for any footnotes associates with the Data Item. The
associated text can be found in the Footnotes section included within the Excel
document.
Columns I-N: Read Coding
Provides the associated 4 Byte; 5 Byte and Version 3 terminology codes and terms
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recommended for use at the point of care
The Read Code(s) suggested for each data item are those that most accurately reflect
the specified definition / description. It should be noted that a wider range of codes
may be suggested by GMS and NCASP query sets to allow for more extensive
searches.
For example codes suggested within the dataset for diagnoses do not include history
codes, or tests that confirm a diagnosis. These codes may however be included in
query sets to identify diagnostic information that has not historically been recorded
using a diagnosis code.
Care must also be taken to ensure that any Read Codes used will provide an output in
the specified format. This is particularly relevant where a value is required.
For example, when recording information following a Blood Pressure reading, any
associated Read Codes must provide distinct blood pressure values for Systolic
Blood Pressure and Diastolic Blood Pressure. Within the Read Code hierarchy
there are codes provided that facilitate the recording of changes in blood pressure
reading, however these would not conform to the requirements of the dataset.
For some data items a bounded list, or group of Read Codes, has been provided to
allow for differing contexts and granularity of information required at the point of
care. Where a % sign has been attached to a Read Code this indicates that the code
plus all ‘its children’ in the hierarchy are applicable to that data item. If certain
codes need to be excluded, then a series of ranges is given. This follows the
convention used within Miquest queries.
Please note that as at March 2005 not all columns are completed for 4 Byte and Version 3 Read
Codes. However a request has been made to the Terminology Service for this work to be completed
and the Dataset will be updated as further codes and terms are confirmed.
Columns O-P: Snomed Clinical Terms
These columns will provide Snomed CT terms and codes. The content of these
columns will be dictated by a gap analysis work package which is currently being
organised with the Terminology Service.
Column Q: ICD10 / OPCS4
Provides ICD10 or OPCS4 codes for those data items that may require extraction
using HES data.
Column R: Work Streams
Provides a reference to each of the work streams associated with the Data Item.
Abbreviations used are as follows:
GMS:
NCASP:
PI:
DiabetesE:
Retinal Screening:
The new GMS Contract
National Diabetes Audit
Better Metrics Performance Indicators for Diabetes
Diabetes E, Performance Assessment Tool
NSC, Retinal Screening Programme
The following work streams/areas have also been referenced where not already
reflected in the above:
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NSF:
NSFi:
NICE:
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National Service Framework for Diabetes
A performance indicator project associated with early NSF
development
National Institute for Clinical Excellence guidelines
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