Cancer registration FAQs

The NHS keeps a central record of information about people with cancer. This is called a cancer registry. Cancer registries tell us how many people are diagnosed with cancer, what treatments they have, how long they live, and whether overall this is getting better or worse.

It is important that people with cancer, and those who care for them, know what happens to information about them and what choices they have about how this information is used.

England, Scotland, Wales and Northern Ireland each have their own cancer registry. The information below explains how cancer registration works in England but you can find out more about cancer registration in the devolved nations by following the links below:

How is patient data collected and what choices do patients have about this?

People diagnosed with cancer are automatically included on the registry but can request that their data is removed if they wish.

Information about a person is included in the national cancer registry when they have been diagnosed with cancer. A small number of people also have their information included in the registry because they are diagnosed with certain conditions that can lead to cancer or their doctor suspects they may have cancer and sends them for further tests.

This process currently happens automatically, with information coming directly from hospitals and laboratories. This means the information is available in a timely fashion and its reliability can be checked and improved quickly. It also ensures that information about people who are diagnosed with cancer very late or who only survive for a short time is also collected.

People can choose not to have their information used by the cancer registry, and ‘opt-out’, if they prefer. They can do this by emailing the cancer registry (optout@ncr.nhs.uk), or by writing to: Director, National Cancer Registration Service, Public Health England, Wellington House, London SE1 8UG.

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What information is collected?

The registry contains information about the person and their cancer. 

The cancer registry includes information about the person with cancer (their name and address; age, gender and date of birth) as well as about their cancer and treatment, including the type of cancer or condition, when and how they were diagnosed, what treatment they received and the date and cause of death. To get a more complete picture, this information can also be linked to other information when available. For example, what people have said about their care in the Cancer Patient Experience Survey.

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How is the information used?

Registry data is used to help plan cancer services, support direct care, investigate potential causes of cancer and check how well the NHS is doing and how it could improve.

The information in the cancer registry can tell us at a national level 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 by the NHS to help improve treatment and care for people with cancer:

  • To plan NHS cancer services

For example, the NHS decided how many proton beam machines they needed to build in England based on the number of people in the cancer registry they thought might need this treatment.

  • To investigate potential causes of cancer

For example, Public Health England can use the cancer registry to check whether living near a mobile phone mast or power cable affects how likely someone is to develop cancer. This knowledge can be used to protect people from identified causes of cancer.

  • To support direct care

For example, the cancer registry can be useful for checking whether someone being investigated or treated for cancer has a family history of the disease. This may affect their treatment. Another example is when new information emerges about the long-term effects of treatment that someone has had in the past. The cancer registry keeps a record of this and allows them to be contacted so they can receive the care and support they need.

  • To check how well the NHS is doing and how it could improve

By identifying trends in the number of people diagnosed with cancer, how long they live and how successful their treatment and care is, the cancer registry can be used to monitor how well the NHS is doing and identify what it could do to improve. This may result in the NHS and government changing what services are provided or how things are done.

The cancer registry aims to include information on everyone with cancer. This is because for some uses of registry having complete data is important. For example, trying to understand rarer cancers is already difficult because they only affect a small number of people. If the data was less complete this would be even harder. There is a similar problem when trying to investigate potential clusters of cancer in a small area e.g. around a power plant. Doing this well depends on knowing about as many cases in that area as possible.

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Who runs the registry?

The National Cancer Registration and Analysis Service (NCRAS), part of Public Health England, manage the cancer registry in England.

Public Health England is an arm’s length body of the government that works closely with the NHS. NCRAS is part of Public Health England and receives information about people with cancer directly from the hospital or laboratory.

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Who can access registry data and what safeguards are in place?

There are strict ethical and security safeguards to protect the cancer registry and access to the data is strictly controlled.

Cancer registries take great care to keep the information they hold about patients confidential and, as with other medical records, strict ethical and security safeguards are in place and access is strictly controlled.

Only cancer registry officials and data analysts within NCRAS (the team that manages the cancer registry for Public Health England) can see data that could identify an individual patient directly and then only if they plan to use it in a way that supports ‘the provision of health and social’ care by the NHS or for the ‘promotion of health’.

Sometimes this work involves supporting ethically-approved research studies. To do this, it is necessary to get consent from the patients involved or special legal permission. Access is decided by a strict approval process that is overseen by Public Health England’s Office for Data Release.

A patient’s information will also be shared with the medical staff providing their care.

If cancer registry data is grouped together (aggregated) and anonymised (all information that could directly identify an individual is removed) it can be used for wider purposes. For example, aggregated and anonymised information from the cancer registry is also used by organisations planning health and social care services, and by organisations or individuals carrying out research related to health needs.

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Are there any risks to patients?

The cancer registry has a good track record for keeping data safe with no known security breaches in the 25 years it has been running.

We know that people have concerns around privacy and data security. All health data and medical information, whether held in paper records or on computers, has the potential to be lost or stolen. Some people worry about what could happen if information about their health did manage to get into the wrong hands.

However, because information about health is sensitive, by law it has to be kept under the highest levels of safety and security.  The cancer registry is held on a secure computer database with tightly controlled and restricted access. In the 25 years it has been running, there have been no known security breaches. The risk of a security breach involving the cancer registry in the future is extremely small.

There is a very small theoretical risk that an individual could be identified from data about them in the registry, but this would be very difficult and against the law.

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Cancer registries and Macmillan Cancer Support

Macmillan Cancer Support works with cancer registries in the UK to carry out research into the numbers, needs and experiences of people affected by cancer. We do this to help us raise awareness of cancer and improve cancer services in the UK. Using cancer registry data helps us to understand the experiences of a very large number of people in a cost-effective way.

The researchers who analyse the cancer registry data work at the registry. They have full ethical approval to access patient-level data and follow strict security and governance procedures. Macmillan Cancer Support does not have access to any information at all about any individual person.