Your data and the cancer registry

Your general healthcare data

Millions of lives have been saved or improved by collecting and analysing the personal health data of patients and the general public.

The NHS collects this information and experts within the NHS and other organisations use it to improve healthcare services and treatment. For example, many charities including Macmillan use information about people with cancer and other conditions to understand more about their needs. This in turn enables organisations to deliver improvements to treatment, care and support.

More information about how charities such as Macmillan use healthcare data can be found in the My data, my care report.

If you live in England, you now have a right to choose how your confidential patient information is used. If you do not wish for it to be used for research and planning purposes, you can opt out quickly and securely online, by visiting: www.nhs.uk/your-nhs-data-matters.

Once you have registered an opt-out, your confidential patient information will not be used for the purposes of planning and research. You can change your preference at any time. This is separate choice from choosing whether or not your information is collected in the English National Cancer Registry, but it does affect whether the registry can share your data with organisations and institutions which may use it for research and to plan health and care services.

What is the cancer registry?

When you are diagnosed with cancer in the UK, some information about you and your cancer is collected in a national database. This is called a cancer registry. Each country in the UK has its own cancer registry (see below). Collecting this information helps the NHS and other organisations to plan and improve cancer services, so they are as good as possible. There are strict rules to make the sure that the information in the registries is kept safely and securely.

Your data and the cancer registry

When you (or your child) is diagnosed with cancer, your hospital will automatically send information about you to the registry. 

This means the information is available as quickly as possible, and also ensures that information about people who are diagnosed with cancer very late or who only survive for a short time is included.

If you prefer, you can choose not to have your information included by contacting the cancer registry in your country. 

If you live in England and have opted out of sharing your personal healthcare information for research and planning purposes, your information will still be added to the registry and securely held. However it will not be shared with organisations and institutions which may use it for research and to plan health and care services.

The reason for still collecting this data in the registry is because, with one in two people receiving a cancer diagnosis in their lifetime, this information is deemed to be of national importance in combatting the disease.

What information is collected?

The registries contain information about each person who has been diagnosed with cancer, including:

  • name and address
  • age
  • gender
  • date of birth
  • type of cancer
  • when and how they were diagnosed
  • what treatments they have had.

Personal information, such as your name and address, is collected to make sure that all the information about you is accurately linked together and that you can be contacted about your care or treatment if necessary.

Registries may also include information about outcomes, such as a date that treatment has ended, or a date and cause of death if someone has died.

What is the information used for?

The cancer registries give information about cancer at a national level. They record:

  • how many people are diagnosed with cancer
  • what treatments they have
  • how well treatments work.

This information is used to help understand cancer better and ensure that people living with cancer are receiving the best possible care and support. It is used to:

  • provide national cancer statistics
  • plan and monitor NHS cancer services
  • find where new cancer services or improvements are needed
  • check if someone having tests or treatment for cancer has a family history of the disease
  • contact people if there is new information about long-term side effects of a treatment they’ve had in the past
  • help with research into cancer; for example, into potential causes or new treatments.

Sometimes, information in the cancer registries is linked to other data, such as what people have said in the Cancer Patient Experience Survey.

Patient experience surveys can be used to find out how people felt about the care they were given. Linking these two sets of data means we can compare things like cancer type, treatment and location with patient experience. This could help identify areas where care is very good and areas where care could be improved.

The aim is for cancer registries to contain data on all cancer patients. The more complete the cancer registries are, the more useful they are.

Who can see the information?

Your information may be shared with your healthcare team to help with planning your individual care. Doctors can only see information about their own patients.

In addition, cancer registry officials and data analysts are able to access and use cancer registry data, to support the provision of health and social care or the promotion of health.

Finally, the information in the cancer registry is also used by external organisations planning health and social care services, and by organisations or individuals carrying out research related to health needs, for example charities like Macmillan. However, when data are released outside the cancer registry there are strict data-release protocols which must be followed.

If you live in England and have opted out of sharing your identifiable personal healthcare information for research and planning purposes, it will not be shared from the cancer registry with external organisations or individuals.

Is my information safe?

As with all medical records, there are strict rules to make sure the information is kept safely and securely. Information about health is sensitive, so by law it has to be kept under the highest levels of security. Cancer registries are held on secure computer databases with tightly controlled and restricted access.

If people or organisations (such as the NHS) need to access information in the registry, there is a carefully managed legal process to go through.

Are there any risks?

We know that people have worries about privacy and data security. All medical information, whether on paper or on a computer, has the potential to be lost or stolen.

The risk of a security breach involving the cancer registry in the future is extremely small.

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

How do I find out more?

If you have any questions, you can find out more on the website of the organisations that manages the registry in your country:

Your healthcare team can also help you find out more about the cancer registry where you live.

How can I ask for my data not to be stored?

If you do not want your or your child’s information to be included in the registry, you will need to contact the cancer registry in your country directly and opt out. You can find out how to do this from the relevant cancer registry website (see the links in the paragraph above) or by asking your healthcare team.

Is it possible to opt out of the English cancer registry via the National Disease Registration Service website.

Cancer registries and Macmillan Cancer Support

Macmillan Cancer Support works with the 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 on behalf of Macmillan work at the registry. They have full ethical approval to access patient data and they follow strict security procedures. Macmillan Cancer Support does not have access to any information at all about any individual person.

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