Over recent years, cancer registries have been subject to a number of outside influences that have caused them to adapt the way they are organised and re-think their working practices, such as the call for the introduction of informed consent and changes in health geography.
The roles of registries have developed from traditional registration into cancer information and intelligence provision, with registries having an increasingly important role to play in taking forward the national cancer agenda. The following are a few examples of projects and initiatives.
Following publication of the Cancer Reform Strategy for England in 2007, the National Cancer Dataset (NCDS) is being reviewed and revised to ensure that it meets the needs of the current service and policy requirements. The NCDS "core" was originally approved in December 2002, followed by a series of site-specific appendices and a cancer registration dataset. The work is being carried out by the Datasets Service in collaboration with the National Cancer Intelligence Network (NCIN), including input from 12 NCIN Site Specific Clinical Reference Groups (SSCRGs). The site-specific data items identified by the SSCRGs and the reviewed cancer registration dataset will be collated into one dataset which will be taken forward for approval as an NHS information standard.
The project commenced in June 2009 and is anticipated to complete in September 2011, with dataset collection being mandatory from April 2012. Cancer registries are involved in the work of the SSCRGs to define the datasets as well as putting systems in place to receive and process the NCDS once it has been approved.
The 12 NCIN Site Specific Clinical Reference Groups (SSCRGs) have been tasked with ensuring that good quality cancer data is available to inform and drive improvements in standards of cancer care and clinical outcomes, as well as enabling the use of cancer information to support audit and research programmes.
The English regional cancer registries are involved with the work of the SSCRGs by taking up cancer registration lead roles. Initial work undertaken by each lead registry provided a site-specific "baseline assessment". Registries are now developing their roles as cancer registration site-specific leads through dedicated programmes of work.
The National cancer data repository holds data for England from the national (ONS-format) cancer record, with related Hospital Episode Statistics (HES) activity. It is hosted at the Thames Cancer Registry and is maintained by staff from Thames and NYCRIS, on behalf of the UKACR and under contract from NCIN.
The repository currently contains over 8.5 million cancer registry records linked to 34million hospital records. It is planned to extend the repository to improve both timeliness and usefulness, by adding further years of registry and HES data and including more data from the regional registries, specifically staging and treatment data.