Collecting and using data

Data collection

NCIN is involved in a range of work to understand what information is required for the delivery of cancer services; to improve data quality and timeliness; and to link datasets together and make them available to improve outcomes. This part of our website describes our work on defining what data are collected and how these data are protected and used.

The population level cancer registries in England, Northern Ireland, Scotland and Wales collect information about every patient diagnosed with cancer. Cancer registries are allowed by law to collect this information to help us better understand and treat cancer. Access to this information is strictly controlled and our publications never identify any individual. At the UK level, we co-ordinate information which is already aggregated.

Each of the English cancer registries has taken the lead for one or more tumour sites. The lead registries support the Site Specific Clinical Reference Group for that site and deal with data requests for the relevant tumours. You can find out more about cancer registration from the United Kingdom Association of Cancer Registries who also produce a leaflet with information for patients.

We bring data together for England into a National Cancer Data Repository and link it to additional data including surgery, radiotherapy and care in general practice. These data are made available to properly authorised analysts and researchers under our data access arrangements.