Review of Informed Choice for Cancer Registration
What is happening in the review?
Cancer Research UK and Macmillan Cancer Support are reviewing how cancer patients in England could be better informed about the use of their data in cancer registration, and how they can choose whether their data are included.
- We expect this review to help inform an important decision by the government about how cancer patients can choose whether their data are included in the cancer registry.
- We're currently using the evidence and views collected thorugh our pateint and healthcare professional involvement to shape our proposals.
- The review will run until July 2016, when we will report to government. We expect to publish our findings by September 2016.
Ask us any questions about the review or who has been involved
In partnership with Macmillan Cancer Support
Who has been involved?
As part of the review we have gathered evidence from as many groups as possible, in particular:
- People affected by cancer, including their families and carers
- Healthcare professionals
- Other cancer charities
We ran a series of events, surveys and interviews to engage these groups and will be inviting some organisations to submit written evidence.
What is cancer registration?
When a person is diagnosed with cancer in the UK, or is suspected of having cancer, information about them is automatically included in their national cancer registry.
It is data from cancer registries that 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.
Scotland, Wales and Northern Ireland each have their own cancer registry. Our review relates specifically to the English cancer registry, because we are planning to feed our results directly into a review of health data in England. We will be speaking to the other UK cancer registries to inform them about our review and its findings.
Why are we holding this review now?
The government in England has been reviewing how people can be offered a clearer choice about what happens to data about their medical treatment and care. This process highlighted that the way that people are currently informed about cancer registration needs to be improved.
That is why Cancer Research UK and Macmillan Cancer Support have offered to conduct this review. We intend to recommend how patients in England can be better informed about how their data is used in cancer registration. This includes being given enough information to make an informed choice about their data being included in the cancer registry.
At the moment individual people can choose not to have their details included in the registry. Cancer patients should receive information about the registry, as well as how they can stop their own data from being included, when it becomes relevant to them; by their hospital, at the point at which they are diagnosed.
However, we’ve heard that not all patients receive this information. We believe that patients have the right to know how their data is being used, and should have the opportunity to make an informed decision about their involvement. That is why Cancer Research UK and Macmillan Cancer Support are working together to carry out this review.
The findings of our review will help inform a decision by the government about how cancer registration will be managed in the future.
Read more about cancer registration
The review of informed choice for cancer registration relates to England only. For more information about cancer registration in the devolved nations please follow the links below:
The Review Panel
The review is led by a Panel of clinicians and patients as well as staff from both Cancer Research UK and Macmillan Cancer Support. The members of the panel are:
- Sara Hiom - Co-Chair, Director of Early Diagnosis & Cancer Intelligence, Cancer Research UK
- Dr Fran Woodard - Co-Chair, Executive Director of Policy and Impact, Macmillan Cancer Support
- Bonnie Green - Patient Representative
- John Marsh - Patient Representative
- Professor Jane Maher – Joint Chief Medical Officer, Macmillan Cancer Support
- Dr Rosie Loftus - Joint Chief Medical Officer, Macmillan Cancer Support
- Professor Arnie Purushotham - Clinical Adviser, Cancer Research UK
- Karen Phillips – Clinical Nurse Specialist, The Whittington Hospital NHS Trust
- Eileen Philips – Member of National Data Guardian Panel
- Cameron Robson - Deputy Director, Information and Transparency Policy & Strategy, Department of Health
- Dr Jem Rashbass – National Director for Disease Registration, Public Health England (observer)
- Emma Greenwood – Head of Policy Development, Cancer Research UK (observer)