Our policy on patient data

Patient data is essential for improving cancer outcomes – through research, as well as through improving treatment and care. The information held about patients in their medical records, in cancer registries and other databanks can be used to research the causes of cancer, monitor survival rates, study the effectiveness of treatments and interventions such as screening, and follow up patients in clinical trials.

Cancer registration

The high-quality, population-based data held within cancer registries has played a vital role in efforts to improve outcomes for people affected by cancer and is at the heart of the 2015 Cancer Strategy for England. It is crucial that this vital source of information is protected in the future.

In partnership with Macmillan Cancer Support, we ran a three-month review to look at how people affected by cancer in England could best be informed about how their data is used in cancer registration.

Access to data

Cancer Research UK holds a number of active grants which directly rely on access to datasets and data linkages. We also have internal statistical analysis and evaluation teams. Delays in access to data – sometimes up to a year – have caused significant problems over the last 18 months. The current issues with data access should be addressed in order to ensure that this vital research can progress. 

EU General Data Protection Regulation

The final text of the General Data Protection Regulation is a positive outcome for research, striking a crucial balance between protecting privacy and ensuring game-changing research in Europe can continue. We’ll be working to ensure the new law is implemented effectively in the UK.

UK statement on implementing the General Data Protection Regulation

Consultations

Response to the National Data Guardian Review of Data Security, Consent and Opt-Outs

Download response

Response to the Cabinet Office consultation ‘Better Use of Data’, in partnership with the Wellcome Trust, British Heart Foundation and MQ

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Response to the Department of Health consultation on the National Data Guardian for Health and Social Care

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Response to Caldicott Review of Information Governance

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Contact us

Get in touch with our policy team to find out more information about our policy on supporting research.

Call our policy team for more information.

020 3469 8360 

Email the team

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