Review of Informed Choice for Cancer Registration

Cancer Research UK and Macmillan Cancer Support have reviewed 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 has happened?

Who was involved?

During the review we gathered evidence from as many groups as possible, in particular:

People affected by cancer, including their families and carers

We had two patient representatives on our review panel and we held four patient engagement events: two in London, one in Manchester and one in Leeds. 

We also held a workshop specifically for members of Use MY Data and Independent Cancer Patient Voices, groups with a particular interest in the use of cancer patients’ data. For those who were unable to attend the engagement workshops we ran an in-house survey, which received 303 responses.

In order to provide more robust evidence, we commissioned Ipsos MORI to conduct a survey of 1,000 people with cancer and 1,000 members of the general public.

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Other cancer charities

In order to make sure that the cancer charity community could 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 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 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 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.

How is data collected?

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.

How is data kept secure?

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.

Cancer data across the four UK nations

EnglandScotland, Wales and Northern Ireland each have their own cancer registry. Our review refers specifically to the English cancer registry, because we are feeding our results directly into a review of health data in England. However, we have spoken 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 did we hold this review?

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 offered to conduct this review. We have recommended 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.

The current situation

At the moment individual people can choose not to have their details included in the registry. Cancer patients should receive information about the registry from their hospital, when it becomes relevant to them (usually at the point of diagnosis). This should include information about how to stop their data from being included in the cancer registry. However, we had heard that not all patients receive this information. 

Our review

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 have worked together to carry out this review.

The findings of our review have helped inform the 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 was 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 we:

  • 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)