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 data items in COSD, together with definitions, formats, codes and values and additional guidance on collection and implementation. Find out more about the COSD documents available in the data sets section of this website.

This User Guide is aligned with and should be read in conjunction with version v10.2.0 Final of the data set, published in the data sets section of this website.

The main aim of the revision was to reduce the burden of data collection wherever possible on frontline staff. This in turn has allowed us to remove 77 data items, with a net reduction of 15%. These regular reviews are having a huge effect on the formulation of COSD.

The removal of the pathology data items into their own specific data set in v9, resulted in a reduction on burden of data collection for MDT Coordinators of up to 30%. In v10 there is a further 15% reduction, resulting in an overall burden reduction of up to 45% in 3 years. This is something we need to be proud of, but there is still more work needed in v11 to maintain COSD as the leading data collection of cancer data in England.

This revised version of the data set also incorporates amendments to the data set itself and a revision of the current schema specification, in-order-to continue to meet the business objectives of the standard. It accompanies a change notice for the standard (Amd 89/2022) which has been accepted by the Data Alliance Partnership Board (DAPB).

Implementation of the Standard is carried out by the National Disease Registration Service (NDRS) and queries regarding implementation should initially be raised with the Data Liaison staff at your local NDRS office.

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 Boards 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 COSD 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 attending meetings or receiving official board minutes and consults on relevant topics.

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’ and NHS Digital’ 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 COSD

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.

All Trusts should be running the latest version of COSD by 01 September 2024.

Please contact your Regional Liaison Manager if you're having difficulties.

Key changes since version 9.0.2

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 Data set v9.0.2 and should be used to help data collection.

Throughout the data set there are now a series of choices which will make collecting and reporting data easier to understand and will be supported by the new schemas.

In addition, there are some key new sections to link potentially orphaned data items throughout the data set.

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

The following are the major changes to COSD v10:

This provides a net reduction in the v10 data set of 54 data items.

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

All changes are available to view in the COSD workbook, within the yellow 'Change Log' tab. This will provide you with the following information:

• change ID
• data item number
• data item name
• data item section
• change type
• previous
• new
• change reason
• approved
• data set version (where change actioned)

Corrected schema to allow Cancer Care Plan to be recorded for all pathways, not just a Primary Pathway.

Note:

• reference to pages above relates to the PDF version of this user guide which is available to download from the COSD dataset page on this website

This User Guide provides additional information to support the COSD Specification and should also be used in conjunction with the COSD Data set (v10.2.0), Implementation and Technical Guidance documents.

Feedback and questions relating to the COSD are welcomed and should be emailed to [email protected]. In addition, there is an online change request form that people can use to request any new change or amendments to COSD.

Queries regarding the Standard itself should be addressed in the first instance to [email protected].

You can also contact your local NDRS Liaison Manager. Find out more information on the NDRS Data Liaison team on the COSD page on this website.

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 cancer information systems are designed, this change of status will not be sent automatically within the next available upload of data.

CancerStats2 website

Feedback reports for the data submitted are available through the CancerStats2 website.  (This link opens in a new window)

Please note that this platform requires an N3/HSCN secure network connection. To ensure the best user experience, we encourage the use of modern web browsers such as Google Chrome, Mozilla Firefox or Microsoft Edge to access the platform. A small number of platform users have reported issues when opening reports using Internet Explorer.

This provides feedback on the completion for some key data items (Level 2), where the files are submitted in the prescribed XML format. It also includes the next level of reports (Level 3), which covers data that has been processed and quality assured by the National Cancer Registration and Analysis Service (NCRAS).

In October 2022, a new ‘Early/Late Stage Cancer’ suite of interactive reports was also released, with the support of NHS England. These can be accessed by tumour group, region, cancer alliance and Trust.

In addition, there are reporting tools for the

• Radiotherapy (RTDS)

• Systemic Anti-Cancer Therapy (SACT)

• Cancer Alliance Data, Evaluation and Analysis Service (CADEAS)

• access to population level Incidence, Mortality and Survival data

• Living With and Beyond Cancer (LWBC)

• Rapid Cancer Registration Data set (RCRD)

Acknowledgements

We would like to express thanks to all those who have participated and continue to provide support and guidance in the development of this information standard. Specific thanks go to the COSD Advisory and Governance boards, the Royal College of Pathologists and Expert Advisory Group (EAG) members, for helping to guide COSD and continue to ensure all data is clinically relevant and not out-of-date.

Particular thanks has to be given to the NCRAS Liaison Managers, who work tirelessly around the country supporting their local Trusts with data quality, ascertainment and cancer data set issues and queries. Together they provide a huge resource and their work often goes unnoticed, but by a few.