Our policy on the use of patient data in research
The NHS treats the largest single pool of patients in the world and, as such, the quality and volume of patient records which it stores is unique and invaluable. Access to this patient data is essential for cancer research. NHS patient records, cancer registries and databanks can be used to research the causes of cancer, monitor survival rates, study the effectiveness of treatments and interventions, such as cancer screening, and identify appropriate participants for clinical trials. Cancer Research UK wants to promote quick, efficient and secure access to accurate data in order to best support the work of our researchers.
It is important to strike a balance between enabling the use of patient data in our lifesaving research while still protecting the rights of individual patients to privacy and confidentiality. Cancer Research UK fully supports the existence of legal protections around the use of patient data to ensure that this sensitive information is always handled securely and ethically. However, we also feel that the current regulation and governance environment is unnecessarily complex and unclear.
To help the public understand exactly how and why their data is used in research, the UK Clinical Research Collaboration, which Cancer Research UK is a member of, has produced this information leaflet – ‘Your health records save lives’.
We believe that greater clarity and consistency around the use of patient data in research will benefit everyone: researchers will be able to conduct their work more easily and efficiently, individuals will be able to feel confident that their data is being well protected, patients will be better informed about the clinical trials which they can participate in and the public in general will benefit from our ever greater understanding of the causes and preventions of cancer.
For a more detailed explanation of the current regulation and governance surrounding the use of patient data and Cancer Research UK’s position on it, click here to download our Policy Statement.
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