About the Cancer Registration Team
A cancer registry has been in operation in Oxford since 1952, as part of a national network of cancer registries. An important role of the registries is to collect the national minimum data set for cancer registration to feed the National Cancer Registration Scheme operated by the Office for National Statistics (ONS). The Cancer Registration Team in Oxford collects data for all residents of the counties of Berkshire, Buckinghamshire, Northamptonshire and Oxfordshire and for those treated at hospitals within these counties.
Methods of Cancer Registration
Methods of cancer registry have been transformed from a paper-based passive recipient of hospital notifications to an agency for processing multiple electronic data sources. The team are proactive in seeking out all possible sources of information on new cancer cases and meet regularly with the providers of cancer care.
Regular downloads are received from cancer waiting times, hospital pathology, oncology and patient administration systems. These electronic records are record-matched against the existing register to establish whether the new record relates to an existing cancer case or whether it constitutes a newly diagnosed case. Demographic and some clinical details are written automatically to the register. Other detailed information such as pathology diagnosis is reviewed by clerical officers before being added to the system.
Information is also accessed from private hospitals and laboratories, screening programmes and, for quality assurance (QA) purposes, GP and hospital case notes.
The Office for National Statistics forwards death certificates for patients dying of cancer and also for those registered cancer patients who die from non-cancer causes. ONS identifies these by using a flagging system at NHS Central Register.
The team has developed a strong quality assurance (QA) programme to ensure consistency, accuracy and completeness of both current and historic data. The unit employs a dedicated QA Officer who constantly monitors the quality of the data. Monthly checks on the database identify inconsistent coding and duplicate records using validation checks from IARC, ONS and those developed in-house. A monthly audit of registrations checks back against source data for input errors. Immediate feedback is then given to clerical officers and IT staff.
In addition to the quality assurance of the database, we have an active ‘external QA’ programme. This involves visits to trusts to review data exchange processes and to ensure that all sources of cancer information within hospitals are being utilised.
A set of Quality and Performance Indicators has been devised by the UKACR Quality Assurance Group for all registries to use. These quality indicators show that our data is not only of above average quality, but is also made available earlier than most other registries’ data.