Cancer Research UK comments on the Government’s response to the National Data Guardian Review

Cancer Research UK and Macmillan Cancer Support welcome the Government’s response to the National Data Guardian Review. We are pleased there is recognition that the Cancer Registry should have a system that allows population wide, high quality data collection. We believe that cancer registration is best served by a system that supports people to make an informed choice about data relating to their cancer diagnosis once it has become relevant to them.

The vital data collected by the cancer registries tells us how many people are diagnosed with cancer, what treatments they have, how long they live and whether this is getting better or worse. This information can then be used to help plan cancer services and identify where further progress is needed in order to improve the lives of all people affected by cancer.

Sir Harpal Kumar, Cancer Research UK’s chief executive said: “We’re pleased the Government has recognised that the high-quality data held by the cancer registry plays a vital role in improving the outcomes for people affected by cancer. The data from this registry is critical to supporting and measuring delivery of the 2015 Cancer Strategy for England which is helping to shape the cancer treatments and services that we will need in the future. The decision ultimately means patients can benefit now from care that is based on the best information possible from the cancer registry. It is important that strong safeguards are in place to govern the use of patient data and we are pleased to see that security is a priority.

“Our joint research with Macmillan Cancer Support shows that 83 per cent of people with cancer believe it’s important that they’re informed about how their data is used. It’s now essential that Public Health England and others improve awareness of why and how cancer data is used among people affected by cancer, health professionals and the public. We hope this can lead the way in improving general awareness of how health data is used to ensure patients receive the best care possible.”