Your data and the cancer registry
Cancer registries collect patient information that helps improve care for people affected by cancer. Find out how your data may be used.
When a person is diagnosed with cancer, or a condition that might lead to cancer, some information about them is collected by a cancer registry. This is a database of information on cancer diagnoses and treatment.
There are 4 cancer registries in the UK. They are run by the following organisations:
The information collected by a cancer registry is used to help understand cancer in the UK better. For example, it shows:
- how many people are diagnosed with cancer
- what treatments they have
- how well treatments work.
This type of data is important for planning and improving health and care services. It can be used to ensure that people living with cancer get the best possible care and support.
Hospitals automatically send information to a cancer registry. You do not have to do anything to have your information included.
You have a right to choose not to have information about you, or a child you care for, stored in the registry. This is called opting out. Opting out will not affect the care or treatment that you receive. But the more data the cancer registry collects, the more accurate and useful this is. The aim is for the cancer registry to contain data on every cancer patient if possible.
If you decide to opt out, you need to tell the cancer registry in your area of the UK. For information about doing this, ask your healthcare team or use the following links:
The cancer registry collects information about each person who has been diagnosed with cancer, or a condition that might lead to cancer, including:
- name and address
- date of birth
- information about their diagnosis
- information about their treatment.
Personal information, such as name and address, is collected to make sure that all the information about a person is accurately linked together.
The registry may also collect information about outcomes. For example:
- date that treatment has ended
- whether a cancer returned
- a date and cause of death, if someone has died.
We know that people have worries about privacy and data security. There are strict rules about how cancer registry information is stored, accessed and used.
Information about health is sensitive, so by law it has to be kept under the highest levels of security.
The risk of a security breach involving the cancer registry is extremely small. The cancer registry is held on secure computer databases with tightly controlled and restricted access.
The information is treated with a high level of confidentiality. The cancer registry publishes public reports and statistics, but these never identify any individual person.
If people or organisations, such as the NHS, want to access information in the registry, there is a careful legal process to go through. The information can only be used for health and social care planning and research.
Macmillan works with the cancer registry to do research into the numbers, profile, 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 does not have access to any information about any individual person.
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