Review of the National Cancer Dataset
The National Cancer Dataset: How to define the cancer data which needs to be collected?
Good quality and timely information on cancer services is needed by everyone involved, both consumers and professionals alike. To deliver this, it is imperative that we are able to capture and collate the underlying data for all patients treated and the services offered in a consistent and unified way, whilst at the same time not increasing the burden of data capture on the NHS. From an operational perspective it can be confusing as to what data needs to be captured and for what purpose e.g. commissioning, cancer registration, cancer waits and national audits to name a few. Likewise, it can be unclear as to what items must be captured (mandated) by all those delivering services and what are 'optional extras', which may be of more value locally. The general principles, however, should be that only those data required for a specific purpose should be captured.
The challenge is that to be able to deliver the informatics requirements laid out in the Cancer Reform Strategy (December 2007), we need to agree the specific data items required and ensure the correct processes are in place to enable data capture and data flow to happen as close to real time as possible. To address this issue, NCIN, through its Site Specific Clinical Reference Groups, in collaboration with the NHS Information Centre (NHS IC) and Connecting for Health (CfH) are reviewing the National Cancer Dataset (NCDS) 'core' and 'site specific' data items, which was previously agreed as a Strategic Standard in December 2002. The revision of these datasets will ensure that they meet the needs of the current service and policy requirements defined in the Cancer Reform Strategy. This project follows on from an independent review; commissioned by the Information Standards Board (ISB) to consider whether this previously defined NCDS was still 'fit for purpose'. The review's findings were reported in April 2009, and recommended this detailed dataset review.
Between now and the end of September, the NCIN SSCRGs will review the existing NCDS site specific data items (where they exist), and make recommendations for the revised version. This is not an opportunity to develop large clinical datasets, but to identify those few key items required for delivering the core business needs for their cancer area. Once agreed the datasets will be submitted by the IC to the ISB for recommendation as a required NHS data collection. The IC will be assisting us in aligning data items to the identified business needs, in order to present the requirement for the collection to ISB. ISB is known to be tough but fair, in what it will consider for approval, but, if an item is recommended as key for assessing and delivering a quality service, its value will be recognised and accepted. In parallel the IC will undertake a detailed review of every data item within the existing NCDS ('core') to also confirm their requirement against the NHS business requirements for cancer information and data. The IC review will then be considered further by a small group of registry, network, data owners, clinicians, etc., to recommend the core (the registration dataset) for consultation and final sign off. Consideration is being given to incorporating all related cancer datasets e.g. cancer waits and radiotherapy, within the 'core' being defined and this will be discussed by a new Information Centre, NCDS Project Board, which holds its first meeting on June 3rd.
The overall ultimate aim is to submit the new revised dataset with the additional site specific data items as a single submission to ISB, with all data items agreed and signed off by the end of December 2009. Subject to everything else going to plan, the ISB submission process would commence in early 2010. This will involve the NHS data dictionary team, NHS trusts in definitional & operational testing procedures, with a view to a Dataset Change Notice being issued to the service by mid 2011 for implementation from the beginning of 2012. This is an extremely exciting initiative for NCIN and we look forward to working with our partners to enhance the nationally available data through this project.
