Executive Summary

This user guide is one of a suite of documents to aid users in implementing the COSD Information Standard (DAPB1521 Amd 89/2022). It includes all the pathological data items in COSD, together with definitions, formats, codes and values and additional guidance on collection and implementation. View all related documents on the COSD data set pages.

This User Guide is aligned with and should be read in conjunction with version 5.1.1 Final of the data set, which is available to download from the COSD data set pages, where you can also find additional supporting documents. 

This revised version of the User Guide incorporates some amendments to the data set, an extension of scope and a revision of the current schema specification in order to continue to meet the business objectives of the standard.

Ongoing linkage with the Royal College of Pathologists (RC Path) ‘Core’ data sets is vital and continues to be a priority to ensure clinical accuracy. This data set was reviewed by the chair of the Royal College of Pathologists Working Group on Cancer Services.

Working closely with the college is vital to ensure that COSD maps exactly to their specified data items and names. This will ensure that there is no burden on the histopathologists in recording these data and reduces the burden on reporting for system suppliers to an absolute minimum, as they can map directly from their main tables to the export reports required for COSD.

It is important that where a Trust originally records a patient as having cancer and a record is sent during routine data uploads, but this diagnosis changes to a non-registerable condition, that NDRS is immediately informed of this decision. Due to the complex way pathology systems are designed, this change of status may not be sent automatically within the next available upload of data.

A COSD Advisory Board including Trust level representation continues to help manage change and reports directly to the COSD Governance Board. The purpose and remit of the COSD Advisory Board, is to review and assess proposed changes to COSD, and make recommendations to the COSD Governance Board for further discussion and consideration before approval or rejection of any change request is made.

The COSD advisory board’s role is to understand and balance the effect of any changes to the data sets within NHS Trust organisations collecting, quality assuring and reporting high quality cancer data, but also the impact of change on the NDRS functions, and other users of the data.

The Governance Board is made up of an independent chair, the COSD data set Senior Responsible Officer, the COSD data set development sponsor and senior managers from NDRS and from Cancer Alliances. In addition, the NHSE National Clinical Director for Cancer is an advisor to the Governance Board and kept informed by receiving official board minutes and consulted on relevant topics.

The Cancer Outcomes and Services Data set (COSD) 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.

COSD provides the standard for secondary uses and consists of:

• a set of individual data items, with their definitions
• the assemblage of these data items into tumour specific discrete data sets
• the means of flowing the data items
• compilation of the data items into two reconciled data sets
  • Patient Pathway
  • Pathology

The COSD data sets relate to all cancer patients, both adult and paediatric, in acute inpatient and outpatient settings delivered or commissioned by the NHS.

Providers of cancer services have been required to provide a monthly return on all cancer patients diagnosed from 1 January 2013 using this data set. Data are collated via the National Disease Registration Service (NDRS) local offices, and formal mechanisms for transmission of data from providers to NDRS have been extended to carry the COSD data set.

You can find:

• More information can be found on the change specification, requirements specification and implementation guidance on the NHS England website
• further guidance on the collection of COSD on the data set pages

Why is COSD needed?

Periodically we needed to revise the Cancer Outcomes and Services Data set to ensure that we meet the current information requirements for the NHS.

The ‘NHS Long Term Plan’ aims to save thousands of lives each year by dramatically improving how we diagnose and treat cancer. The ambition is that by 2028, an extra 55,000 people each year will survive for five years or more following their cancer diagnosis.

The need to have strong cancer data collection, empowers NHS England to enforce this through the mandate of data collections. These data will be the base for cancer analysis and research for the next 5 years.

Which diagnoses apply to COSD pathology v5.0?

There is a full list/ranges of registerable SNOMED codes in Appendix A – SNOMED codes for primary diagnoses. Further guidance is available from your local NDRS office.

All conditions represented by all versions of SNOMED morphology codes (prior to CT) beginning M8 and M9 are registerable if the last digit of the code is in the range 1 to 9.

Unfortunately, there is no simple rule (like M8* etc) to identify registerable diseases using SNOMED CT codes. The codes used must therefore be compared to explicit lists of registerable codes, these are contained in 6 clusters.

More specific guidance around recording SNOMED CT, using these clusters, is available in Appendix A.

What data items should be completed?

All registerable conditions should be reported as defined in Appendices A and Appendix B. This includes submitting all pathology reports for these cases.

In addition to the core data set, most cases will also require a site specific data set to be completed. Ongoing linkage with the Royal College of Pathologists (RCPath) ‘Core’ data sets is vital and continues to be a priority to ensure clinical accuracy. This data set was reviewed by the chair of the RCPath Working Group on Cancer Services.

The ‘Core Linkage’ items are Mandatory and must be submitted for all records. (Please note that the core linkage for pathology differs from the main COSD linkage items.) All other applicable data in each section marked as ‘required’ should be submitted for each record as soon as available.

How is pathology recorded?

There is a specific schema for reporting COSD pathology data items. These data should be reported by the pathologist, directly from their Laboratory Information Management Systems (LIMS), and sent to the NDRS (from the pathology department) in structured COSD XML.

It is not expected therefore that MDT Coordinators or other non-clinical staff, should attempt to read and transcribe these reports and information into COSD. To support this commitment in reducing the burden of data collection, all pathology data items were removed from COSD v9 and only available in the COSD Pathology data set.

When should the data be submitted?

The extraction criteria are based solely on the date authorised field.

The deadline for submitting a pathology report/record is 25 working days after the end of each month and should only be submitted once the pathologist has finished assessing each sample and authorises the report.

It is acceptable for pathology records to be submitted quicker than 25 working days, and in some cases are submitted in real-time as the pathologist authorises each report using the direct submission method through the NDRS API portal.

Find the reporting submission schedule  on the COSD data set pages of this website.

Other guidance documentation

This User Guide provides additional information to support the COSD Specification and should also be used in conjunction with the COSD Pathology v5.1.0 data set. Technical guidance and implementation guidance documents are provided separately. Find all COSD supporting documentation on the COSD data set pages of this website.

This updated version of the User Guide includes new data items, re-alignment of data structure, amendments and contains corrections – for example, where there were errors in previous versions and updates where clinical coding or staging values changed from COSD Pathology Data set v4.0.2 and should be used to help data collection.

COSD Pathology v5.0, has further aligned all data items with those in the Royal College of Pathologists ‘Core’ data sets. This has meant some data item name, description and/or list of attribute changes.

All data items have been reviewed by the chair of the RCPath Working Group on Cancer Services and other SMEs. Aligning with the college core data sets, makes COSD Pathology a burden neutral data set, as all these data items must be collected as prescribed by the college.

All pathological data item numbers are prefixed with a ‘p’ and all others are interoperable with the main COSD v10 data set. This allows for updates and corrections to be made without having 2 data items in different data sets with the same data item number.

Throughout the data set there are now choices which will make collecting and reporting data easier to understand, and will be supported by the new schemas. The addition of grouped data items into discrete sections, improves data collection and reporting.

The proposed changes can be divided into the five key areas:

• deleted data items
• new data items
• data items with amended attributes
• moved data items
• schema specification changes

Note:

• in some cases, the same data item is used in different sections of the data set, in these circumstances they are only counted once

The following are the major changes to COSD Pathology v5.0:

Ongoing linkage with the Royal College of Pathologists (RC Path) ‘Core’ data sets is vital and continues to be a priority to ensure clinical accuracy. This data set was reviewed by the chair of the Royal College of Pathologists Working Group on Cancer Services.

Working closely with the college is vital to ensure that COSD maps exactly to their specified data items and names. This will ensure that there is no burden on the histopathologists in recording these data, as they are mandated to collect these via the RCPath. In addition, it also reduces the burden on reporting for system suppliers to an absolute minimum, as they can map directly from their main tables to the export reports required for COSD.

Certain sub sections of categories, namely Gynaecological, Sarcoma, Skin & Urological now belong to a choice, so that we maintain a 1-1 relationship to other sections within a record, otherwise there was a situation where data could not be linked.

NDRS transition to NHS Digital (NHSD)

On 01 October 2021 responsibility for the National Disease Registration Service transferred to NHS Digital from Public Health England (PHE). The transfer is part of the government’s reforms to the public health system announced in March 2021 and means that NHS Digital is now the data controller for data collected by NDRS under data protection law.

Bringing together NDRS’s and NHS Digital’s data and technical expertise will provide significant benefits for patients, clinicians, and the wider health and social care system.

NHSD transition to NHS England (NHSE)

Building on the huge progress made on digital transformation during the pandemic, NHSD and NHSX have merged into NHS England.

The decision by the Secretary of State for Health and Social Care to accept the recommendations of Laura Wade-Gery, Chair of NHS Digital and a non-executive director at NHS England, was announced on Monday 22 November 2021. Find out more about the Laura-Wade Gery report on the GOV.UK website.

Responsibility for the National Disease Registration Service and NHS Digital transferred to NHS England on 01 February 2023.

The impact on the COSD dataset

We would like to confirm that the changes to NHS Digital, will have had no impact on the COSD data sets. Submissions of your monthly data will remain unchanged, and we will keep you updated on any developments going forward.

If you are having difficulties, please contact your Regional Liaison Manager to discuss these in more detail.

This User Guide provides additional information to support the COSD Specification and should also be used in conjunction with the COSD Pathology v5.1.0 data set.

Feedback and suggestions for future changes can be made using the online COSD change request form.

Questions relating to the COSD are welcomed and should be emailed to [email protected].