Introduction - Executive summary and supporting information

This user guide is one of a suite of documents to aid users in implementing the COSD Information Standard (DAPB1521 Amd 13/2019). 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 on this website.

This User Guide is aligned with and should be read in conjunction with version 4.0 of the data set, which is available to download from the COSD data set pages on this website, 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.

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.

The Cancer Outcomes and Services Dataset (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.

This standard consists of:

• a set of individual data items with their definitions
• the assemblage of these data items into discrete data sets
• the means of flowing the data items
• compilation of the data items into a single reconciled and verified data set

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.

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:

• the Change Specification, Requirements Specification and Implementation Guidance on the NHS Digital 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 Dataset to ensure that we meet the current information requirements for the NHS. The Cancer Reform Strategy (2007) identified better information and stronger commissioning as two of the key drivers to achieve the goal that cancer services in this country should be amongst the best in the world.

The Achieving World-Class Cancer Outcomes, A Strategy for England 2015 to 2020 (Taskforce Report) further strengthens the need to have strong cancer data collection and empowers both PHE and NHS England to enforce this through the mandate of data collection. These data will be the base for cancer analysis and research for the next 5 years.

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 the local offices of the NDRS.

Queries regarding the Standard itself should be addressed in the first instance to [email protected] or your local NDRS liaison Manager. Find contact details for the NDRS team on the COSD data set pages of this website. 

All Providers have access to their current monthly position via CancerStats2 (NHS Health and Social Care Network [HSCN] connections only, Please note this link opens in a new window), which has been established by the NDRS. This provides feedback on files submitted (Level 1).

What diagnoses does COSD apply to?

For the purposes of COSD the term ‘cancer’ relates to all conditions defined as registerable by the UK and Ireland Association of Cancer Registries (UKIACR) and these are listed in COSD additional information documents. 

There is also a Cancer Waiting Times (CWT) ICD10 Codes and Tumour Groups for Primary Diagnoses. COSD requires that all new diagnoses and secondary/metastatic cancer are recorded.

All recurrences diagnosed at each Trust must now also be included.

You can view all of the COSD additional resources on the COSD data set page of this website. 

What data items should be completed?

All registerable pathological conditions should be reported as defined in the above registerable conditions document. 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.

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. From v9 (April 2020), pathological data items have been removed from the main COSD data set (v9.0) and can only be submitted through the COSD Pathology data set and associated schema packs.

The reduction in their workload by removing this duplication is estimated to be approximately up to 30%, and this time should be used to ensure full compliance for data collection across all other data-items.

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 Royal College of Pathologists Working Group on Cancer Services.

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

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 v3.0, and should be used to help data collection.

COSD v4.0, 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.

In addition, all pathological data item numbers have been prefixed with a ‘p’ and all others are interoperable with the main COSD v9 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.

There are some key new sections within the CORE section, as below.

Linkage:

• either a NHS Number or a Local Patient Identifier must be provided with every record submitted
• date of birth is now mandatory

Core pathology:

• all records must have both an ‘Investigation Result Date’ and a ‘Service Report Identifier’ as mandatory fields from v9
• there are new ways for recording consultant data
• a choice has been created for topography and morphology
• Ki-67 has been added to the data set
• new data items have been added to record mismatch repair

Site specific sections:

• many data items have been updated to meet the RC Path data set variables – this will improve ascertainment and reduce the burden of data collection (through duplication)

It is possible that some legacy data may not have all the required mandatory fields for v9. The recommendation is for Trusts to update their data to meet the new requirements and improve/enrich their data submissions, or not upload the legacy data items in the new record (if that data is not available).

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 will be merging into NHS England and Improvement.

The decision by Health and Social Care Secretary Sajid Javid 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.

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 dataset. Submissions of your monthly data will remain unchanged, and we will keep you updated on any developments going forward.

All Trusts should now be running the latest version of COSD.

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 v4.0.2 data set.

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