Review of Informed Choice for Cancer Registration

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 is included.

What is happening?

  • 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 through our patient 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.

How can I get involved?

During the review we’ve been gathering evidence from as many groups as possible, in particular:

People affected by cancer, including their families and carers

Other cancer charities

In order to make sure that the cancer charity community can contribute fully to the review and its recommendations, a subgroup of the Cancer Campaigning Group held two workshops to seek their views.

These workshops provided an opportunity for representatives from any cancer charity to discuss how patients can be better informed about cancer registration and the choices they have, and to put forward an informed response to the review.

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Healthcare professionals

We’ve involved a range of healthcare professionals in our review, in order to fully understand the current barriers to informing patients about cancer registration, and to ensure that our recommendations are practical and feasible within the healthcare system.

We’ve engaged with GPs, oncologists, cancer nurse specialists and hospice staff as well as more administrative staff, such as hospital chief information officers, Caldicott Guardians and patient information managers.

We have held interviews with healthcare professionals who work with patients across the cancer journey, conducted an online survey and held two workshops.

To find out more email us at cancer.registration@cancer.org.uk.

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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 people affected by cancer.

The cancer registries aim to contain data on all cancer patients. In England, this is collected directly from hospital and laboratory systems and held centrally by Public Health England (PHE). This automatic collection means that data is available in a timely fashion and its reliability can be checked and improved quickly. However, people can choose not to have their information included in the registry if they prefer.

Cancer registries take great care to keep the information they hold about patients confidential and, as with other medical records, access is strictly controlled. Information that identifies a patient may only be released with the patient’s consent; to the medical staff providing their care or with special legal permission.

Scotland, Wales and Northern Ireland each have their own cancer registry. Our review refers specifically to the English cancer registry, because we are planning to feed our results directly into a review of health data in England. However, we will be speaking to the other UK cancer registries to inform them about our 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.

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

Cancer registration in the devolved nations

The review of informed choice for cancer registration relates to England only. For more information about cancer registration services 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)