Cancer Outcomes and Services Data Set - Children Teenagers and Young Adults

Introduction

Please note that the data items which are included in the Pathology Sets in this version of the Cancer Outcomes and Services Data Set  (v5 of the Pathology Data Sets), do NOT meet the Data Design Principles of NHS England and the NHS Data Model and Dictionary.  They have been included as part of this release of the  Cancer Outcomes and Services Data Set s (v10) but data items which align to the Royal College of Pathologists data set but which do not meet the required standards, have been clearly marked as requiring an update at a later version, and should NOT be used in any other data collection or Information Standard until this has been completed.

The Cancer Outcomes and Services Data Set is a compiled data set which provides the standard for secondary uses information required to support national cancer registration and associated analysis (at local, regional, national and international level), as well as other national cancer audit programmes.

The standard and XML Schema consists of:

• a set of individual data items, with their definitions

• the assemblage of data items into discrete data sets

• the means of flowing the data items

• compilation of the data items into a reconciled and verified data set.

Additionally, the output supports commissioning and service development through provision of relevant information on service delivery and outcomes.

All PATIENTS diagnosed with or receiving cancer treatment in or funded by the NHS in England are covered by the standard. This includes adult and paediatric cancer PATIENTS. The standard applies to all ORGANISATIONS providing Cancer Services within secondary acute care. It does not apply to general practice ORGANISATIONS.

The Cancer Outcomes and Services Data Set covers diseases as defined by the United Kingdom and Ireland Association of Cancer Registries (UKIACR) as described in the Cancer Outcomes and Services Data Set User Guide  at Appendix A and B.

Unless otherwise specified, the term cancer is used throughout the standard and related documents to cover all conditions registerable by the United Kingdom and Ireland Association of Cancer Registries.

Submission Information

Providers of Cancer Services are required to provide a monthly return on all cancer PATIENTS using the Cancer Outcomes and Services Data Set.

The Cancer Outcomes and Services Data Set  is submitted to the National Disease Registration Service  (NDRS) using the COSDS  XML Schema.

While the core and cancer site specific data sets are shown as separate data sets within the NHS Data Model and Dictionary, the COSDS  XML Schema integrates each core and cancer site specific set of data elements. Documentation provided on the Technology Reference Update Distribution (TRUD)  page at: NHS Data Model and Dictionary: DD XML Schemas gives full details of the specification.

For all diagnoses not covered by a cancer site specific data set, only the Core Data Set  should be completed. A full list of diagnoses mapped to the appropriate data set is provided in the National Disease Registration Service: Cancer Outcomes and Services Data Set User Guide.

Pathology

From January 2016 Pathology Laboratories across England were mandated through SCCI1521 17/2014, to collect and return structured pathology using the COSDS  XML Schema.

This replaced the current reporting to the National Disease Registration Service  of electronic pathology reports which were then transcribed by the  National Cancer Registration and Analysis Service into the Cancer Registration Reports. This also prevented Cancer Service  teams, for example, Multidisciplinary Teams, Pathway Co-ordinators, duplicating the work, which had been happening as part of their data collection process.

From April 2020, the pathology data can only be collected and submitted using the separate Pathology Core Data Set  and Pathology XML Schema. Pathology data items have been removed from the main Cancer Outcomes and Services Data Set.

This allows the Cancer Service teams to concentrate on collecting and reporting all the other clinical data required for the Cancer Outcomes and Services Data Set  and the Pathologists to collect and report the pathology items. This will reduce the burden of data collection for the Cancer Service teams and allow for more accurate pathology reporting to be submitted to the National Disease Registration Service.

There will be no requirement for Pathology Laboratories  to double report. Once their Laboratory Information Management Systems (LIMS) are updated to report in the COSDS  XML Schema, all other pathology reporting can cease.

Further Guidance

Further guidance for submission of the Cancer Outcomes and Services Data Set  is provided by the National Disease Registration Service  at: Cancer Outcomes and Services Data Set User Guide.

Mandation

The Mandation column indicates the recommendation for the inclusion of data.

• M = Mandatory: this data element is mandatory and the technical process (e.g. submission of the data set, production of output etc) cannot be completed without this data element being present

• R = Required: NHS business processes cannot be delivered without this data element

• O = Optional: the inclusion of this data element is optional as required for local purposes.

XML Schema

For guidance on the XML Schema constraints, see the Cancer Outcomes and Services Data Set XML Schema Constraints.

For guidance on downloading the XML Schema, see XML Schema TRUD Download.