National Cancer Data Repository
The national cancer data repository has been described as the 'jewel in the crown' of NCIN. Currently, the repository holds data from the national (ONS-format) cancer record, with related HES activity.
The repository only covers England, 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 contains over 8.5 million cancer registry records linked to 34million hospital records, enabling novel and innovative new analyses to be undertaken. The linkage processes have utilised class-leading methodologies, complete with full audits of non-linked records, and detailed quality assurance analyses of linkage performance.
The national repository is being extended in two directions. Additional years of registry and HES data will be added to the repository, making the linked data more timely. Significantly, additional data will be added from the regional registries, in particular the data which they hold on staging and treatment. The role of the SSCRG and lead registry will be important in the understanding and use of this extended data.
Despite the linked repository being updated with more recent data, it will inevitably not be as up to date as 'standalone' HES data, as the cancer registry record currently takes at least 6 months to accumulate. Work is being undertaken to design and develop technical models to allow multiple agencies (registries and the National Cancer Service Analysis Team) to operate against the same national repository, and under a consistent and transparent governance structure.
Reflecting the need to better align with national strategic information solutions, a proposal for the provision of an updated national cancer registration function is being developed, funded by the NHS Information Centre. This proposal will need to go to the Boards of both the NHS Information Centre and the Connecting for Health Research Capability Programme, and to the NCIN Steering Group.
A project to merge the databases and processing of the Oxford and South West registries will complete early in 2009/10. This project, funded through the NCIN, will be the first time that different registries have shared the same physical IT system, with staff using the system over the NHSnet from geographically remote areas, working on the same cases. This is an important milestone, and the lessons learned from the project will influence the next stage of registry integration, which requires a migration to the utilisation of common national data sources (from the IC Project) and common processing rules-bases. An options appraisal will be developed late in 2009/10 to examine the steps required for regional registry integration with national level work, once the national picture is clearer.
