Collecting and submitting COSD data

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 01 January 2013 using this data set. Data are processed via the National Cancer Registration and Analysis Service (NCRAS) local offices, and formal mechanisms for transmission of data from Providers to NCRAS have been extended to carry the COSD data set.

More information can be found on the change specification, requirements specification and implementation guidance on the NHS digital website (this link opens in a new window) .

Find out more on COSD on the data set pages of this website.

Why is it needed?

Periodically we needed to revise the COSD to ensure that we meet the current information requirements for the NHS.

The ‘NHS Long Term Plan’ (this link opens in a new window) 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.

The COSD specifies the data items that need to be recorded for all cancer patients by the NHS in England. This includes all the items that Providers should submit monthly via direct electronic feeds to the NDRS.

These items can be submitted from different systems such as Cancer Management Information System software, Patient Administration Systems (PAS ) and Pathology Laboratory Information Management Systems (LIMS).

Whilst some of these items are generic there are also several site-specific items that are required to record and analyse services and outcomes. These items are also required locally by service providers for patient management and clinical care.

This guide provides a description of the data items, the tumour sites or disease types to which they apply, and any further information needed to collect them.

Some items in the COSD can be submitted through other standard NHS routes, such as Cancer Waiting Times. However, key items such as treatment details, need to be submitted for both.

Data from all sources, whether direct Provider submissions from other national collections or derived from other sources, are linked by the NCRAS at patient and tumour level using NHS Number to complete the full data set.

Read more about COSD data collection in the COSD Technical Guidance.

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 Appendix B.

These are in addition to Appendix A – Cancer Waiting Times ICD10 Codes and Tumour Groups for Primary Diagnoses. COSD requires that all new diagnoses and secondary/metastatic cancer are recorded.

Throughout COSD, we ask for a variety of tumours to be recorded. Cancer Waits (with the exclusion of Breast Cancer) excludes these from their collection, however we ask for many non-invasive cancers, you may have heard these described as ‘in-situ’, ‘benign’ or ‘Neoplasms of unknown or uncertain behaviour’.

For COSD, it’s important to distinguish that the collection of registerable conditions is not about the management of the patient, but how data is collected and analysed. When a patient is managed clinically within the Trust, we accept that clinically ‘pTa’ to ‘pT1’ (non-invasive to invasive) bladder tumour, for example, is a progression of the disease.

However, for COSD, progression is specifically related to progression of cancers. pTis and pTa tumours are not malignant tumours (as defined by the WHO Classification of Tumours), so the progression fields do not apply. Therefore, where this happens, we would expect a new ‘Primary Cancer’ record to be created for the invasive disease.

It must also be noted that if new episodes were not submitted for pT1 tumours following a previous pTa (or pTis) tumour in the bladder, the number of urological malignancies recorded at the Trust would be underestimated and not included in national statistics.

The same assumptions and process must also be followed for any ‘in-situ’ or ‘non-invasive’ cancer for any disease type or group when recording data within COSD.

All recurrences diagnosed at each Trust must now also be included, using the non primary cancer pathway route.

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

For Non-Melanoma Skin Cancer’s (NMSC) that do not require discussion at MDT, only pathology reports are required to be included in the submitting organisation’s monthly pathology feed to the NCRAS. No other information needs to be submitted for COSD.

Note:

• please refer to the ‘Skin’ section for more information and definition of tumours that fall under the NMSC header

For all other new cases (as a minimum) the core data set should be completed, including all applicable data items. In addition to the core data set, most cases will also require a site-specific data set to be completed.

For under 25's, there may be 2 ‘site-specific’ data sets completed (CTYA and disease specific), depending on the nature of the disease and where the patient is treated. Please see CTYA section of this Guide for further details. Wherever possible the burden of data collection has been reduced by assigning CTYA data items to their parent ‘Site Specific Tumour Group’.

There is a separate data set and schema for reporting pathology data items. These data should be reported by the pathologist, directly from their Laboratory Information Management Systems (LIMS) and sent monthly to the NCRAS (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.

The reduction in their workload by removing this duplication was estimated to be up-to 30%, this in addition to the 15% reduction in v10 has almost halved the burden of data collection on the cancer services teams. This time should be used to ensure full compliance for data collection across all other data-items. This workload reduction has been evidenced in the Burden Advice and Assessment Service submissions as part of the data set review process.

The deadline for first submitting a record is 25 working days after the end of month of Diagnosis. All available relevant data items should be included and additional information or updates not available at the time should be uploaded with ensuing monthly submissions. Treatments not submitted with the initial record should also be submitted within 25 working days of the end of month of the Treatment Start Date.

It is important to note that COSD and CWT are no longer be reported on the same day. CWT have reduced the reporting time following the end of each month, whereas (due to the size and complexity of the data), COSD will continue to use the full 25 working days.

The reporting submission dates can be found on the data sets section of this website.

This is used by Trusts to submit their monthly COSD submissions. The portal has been designed to improve:

• the accuracy of data received, by providing validations at the point of upload
• the security of data transfer, by removing the need for Trusts to email submissions
• stage completion, by returning a patient level report back to Trusts

Once the submission process is complete via the ‘Submit to registry’ function, all uploaded data is encrypted. The only data that can be seen is the error report and this can only be seen by other people with permission to access your Trust’s data.

Support, training and testing is available for new users via their NDRS Data Liaison Manager, and they can provide you with an in-depth user guidance document for the COSD Upload Portal.

The COSD upload portal can be accessed online (this link opens in a new window) however:

• the submission portal is only available via a N3/HSCN connection
• a portal login is required using a username and password 
• all accounts must be created for an individual user rather than any shared account usage

Notes:

• currently this is only available for the COSD Patient Pathway xml files
• please contact your local Data Liaison Manager if you have queries regarding the submission process of other cancer data sets