Cancer Outcomes and Services Dataset (COSD)

What is the COSD?

The COSD will be the new national standard for reporting cancer in the NHS in England. It will replace the current National Cancer Dataset and will include the Cancer Registration dataset and additional site specific data items relevant to the different tumour types. It will be aligned with existing national cancer datasets (Cancer Waits and Radiotherapy) and with the Systemic Anti-Cancer Therapy Dataset (SACT) which went 'live' in April 2012. The COSD is being developed by the NCIN in collaboration with its Site Specific Clinical Reference Groups.

Why is it needed?

The national cancer dataset is under revision following a published review in 2009 to ensure that it meets 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 subsequent Improving Outcomes: A Strategy for Cancer (January 2011) further supports this concept to demonstrate cancer outcomes using high quality data and intelligence for all stakeholders.

What is different from current data collection?

COSD will clarify the items that need to be submitted electronically by service providers to the cancer registries on a monthly basis and will confirm the definitions and values for these items. This will replace the current monthly cancer registry upload.  The COSD also specifies the items that the registries will obtain from other sources such as Cancer Waits, Cancer Screening Programmes and ONS.

The COSD includes a generic core dataset which is applicable to all cancers and is a revision of the current Cancer Registration Dataset. There are also twelve site specific datasets of additional items. These include key pathology items and other clinical items which are required for patient management and clinical care. Both the generic core data items and the site specific items will need to be submitted directly to the registries. Items obtained from other sources are separately identified and do not need to be sent directly by providers. (Some items from these other datasets are also included in the direct flow as they are required for identification and matching). 

Many Trusts already send data directly to the cancer registries from systems such as MDT (Multidisciplinary Team) software, PAS (Patient Administration Systems) and Pathology systems and the data items in COSD can continue to be sent from a number of different sources although the format should be in XML. It is expected that the majority of the new site specific clinical data items will be submitted from MDT software systems and the pathology items will come directly from the Pathology systems.  Pathology reports for suspected and confirmed cancers should continue to be submitted directly to the registries.  

Data from Trusts and from all other sources will be linked by the registries at patient level using NHS number to complete the full dataset. 

What is happening next?

The standard has just been given draft stage approval by the Information Standards Board (ISB) and the COSD has been submitted to the ISB requesting full stage approval. 

Consultation on the XML schema has now closed and internal testing has been completed. This specifies the format and structure of the data extract to be submitted by Trusts. Some small amendments have been made to the dataset which has now been re-released as v0.5.1. The draft User Guide has also been updated with these changes and following feedback on the previous version. Both documents can be downloaded from the links below.    

Early testing of the schema

End to end testing of the schema is now underway to ensure that the whole process is viable. Additional help will be available on developing the XML schema and a number of workshops are being set up in collaboration with Connecting for Health to support providers with in-house MDT systems. Providers and software suppliers are encouraged to contact the COSD email below if they would like to be involved in the initial testing process or have any queries regarding the schema or dataset.  

COSD Road Shows

The NCIN and cancer registries will be running a series of “Road Shows” for every Network later this year.  This will be an opportunity to share information about the COSD and discuss any issues with clinicians, management and administrative colleagues who may be affected and to discuss progress towards implementation.  We will shortly be sending out an initial invitation to Networks and would welcome any comments on this to the COSD email address below.

When will the standard apply?

The COSD will be presented to the Information Standards Board for full stage approval when it meets in June 2012. Subject to approval by the ISB, the new COSD Information Standard will be published in July 2012, mandating submission for all NHS providers from 1st January 2013.

Phased implementation

There will be a phased approach to implementation and it is planned that only the core dataset and site specific stage items will need to be submitted initially, as well as pathology reports.  Further information will be provided shortly.

Supporting documentation

The full specification will be published when the standard receives full stage approval and this will include further details of the phased approach.  Meanwhile a state of readiness questionnaire will be distributed soon to inform the focus of the Road Shows.  A workbook is being developed for providers who wish to review their current collection of the data items and to help identify changes to processes which may be required. A draft for download is provided below (Conformance Questionnaire) and we would welcome any comments on this by the end of May before it is finalised.  

Further information?

Updated versions of documents and drafts for consultation are available to download below. 

Please see the latest version of the Newsletter (May 2012) below for further details.  

Reasons for the changes to the implementation date are explained in the Position Statement below.

If you have any queries or comments and for further information on the project please email cosd@ncin.org.uk

Downloads: