Our policy on patient data

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Get in touch with our policy team to find out more information about our work and our policies.

020 3469 8360 

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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.

Patient data for research

In order to implement and evaluate the cancer strategy, and make progress in improving outcomes for cancer patients, we must have access to comprehensive and good-quality datasets. Although we collect a large amount of data on cancer, many datasets have issues with completeness and do not fulfil their potential.

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. High quality data, and timely access to it, is important if we are to make progress in improving cancer outcomes.

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.

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