Health professionals

Our policy on patient data

Patient data is essential for improving cancer outcomes. The information held about patients in their medical records, cancer registries and other databanks can be used to help understand the causes of cancer, improve our ability to diagnose early, and contribute to the creation of effective treatments.

Patient data for research

The high-quality population-based data held within UK cancer registries has played a vital role in cancer research both here in the UK, and around the world. These datasets represent one of the most comprehensive collections of individual health data globally and offer an almost unparalleled opportunity for researchers looking to transform cancer outcomes. It is crucial that this vital source of information is protected.

However, despite the wealth of cancer data that the UK has - barriers to realising its full potential exist: datasets are often incomplete, data access routes are slow and inconsistent, and data is often duplicated or siloed.  Our policy team works closely with researchers, patients, and the NHS to try and address these barriers, making research easier and more effective, driving forward patient outcomes and public trust.

CRUK response to the Scotland Health & Social Care Data Strategy - August 2022(PDF, 432 KB)

CRUK response to House of Commons Science and Technology Committee inquiry into data – Feb 2022(PDF, 236 KB)

CRUK response to DCMS Data Reforms consultation - Nov 2021(PDF, 415 KB)

Cancer Research UK response to Health and Social Care Data Strategy July 2021(PDF, 303 KB)

Unlocking the Potential of Data to Transform Cancer Outcomes (January 2020)(PDF, 3.52 MB)

Response to National Data Guardian for Health and Social Care: A Consulation About Priorities (March 2019)(PDF, 1.79 MB)

Patient Data and Cancer (December 2018)(PDF, 663 KB)

The Potential of AI in Transforming Cancer Outcomes (October 2018)(PDF, 667 KB)

Response to the National Data Guardian Review of Data Security, Consent and Opt-Outs(PDF, 751 KB)

Response to the Cabinet Office consultation ‘Better Use of Data’, in partnership with the Welcome Trust, British Heart Foundation and MQ(PDF, 144 KB)

Response to the Department of Health consultation on the National Data Guardian for Health and Social Care(PDF, 197 KB)

Response to Caldicott Review of Information Governance(PDF, 423 KB)