Opt out of cancer registration

If you don’t want us to collect and store the details about your cancer you can opt out at any time.

Requests to opt out of cancer registration should be made in writing to the address below:

Director
National Cancer Registration and Analysis Service (NCRAS)
Public Health England
6th Floor, Wellington House
133-155 Waterloo Road
London SE1 8UG

Or you can email optout@phe.gov.uk.

Please note: information sent to this email address will not be encrypted.

The opt out process

You will be asked to complete an opt out form. The opt out form requires your name, address, date of birth, NHS number, where, and when you were last treated for your cancer. We use this information to complete a search to find all the data we hold about you and to make sure that we remove the right person’s information.

For data protection purposes we need two types of identification. One for proof of identity and another for proof of address. Acceptable documents include:

  • Proof of identity: Photo identification (a copy of your passport or photo driving licence)
  • Proof of address: A copy of a utility bill or bank statement that includes your address

This information is only used to carry out your opt out request and is securely destroyed when your request has been completed.

Once we have received your completed form and identification documents, our Caldicott Guardian* will offer to call you to answer any questions you have about opting out and to ensure you understand the benefits of cancer registration and the implications of opting out. This call is optional.

If you are sure that you want to opt out we will delete any information about you that we have and any that we receive in the future. We do this by keeping an encoded version of your NHS number secure on our computer system. The system searches incoming data and will delete any data about you that it finds. This will stop any new data about you from being re-registered.

If we have shared personal information about you with other organisations that are allowed to have your information such as NHS England, we will request that they also delete your information from their records.

We will complete the process within 20 days of receiving your opt out form and ID documents.

Finally, we will write to you once the process is complete, to confirm the actions we have taken.

For audit purposes we will keep a confidential copy of your opt out request for three years. This includes your form, emails or letters but not your proof of identity documents. We will destroy these when your request is complete.

If afterwards, you change your mind about your exclusion from cancer registration please contact us either in writing to:

Director
National Cancer Registration and Analysis Service (NCRAS)
Public Health England
6th Floor, Wellington House
133-155 Waterloo Road
London SE1 8UG

Or by emailing optout@phe.gov.uk.

A Caldicott Guardian is a senior person responsible for protecting the confidentiality of people’s health and care information and making sure it is used properly. All NHS organisations and local authorities which provide social services must have a Caldicott Guardian

What happens to my information if I opt out?

If you choose to opt out from cancer registration, PHE will delete any information it holds about you.  Any further information received about you in the future from your healthcare providers will also be deleted.  PHE does not tell your healthcare providers of your decision to opt out.

What are the potential implications of opting out?

For you personally

If you choose to opt out of cancer registration, it may not be possible to identify you as being at risk in future patient notification exercises. For example, NHS England uses information from the National Cancer Registration and Analysis Service (NCRAS) to identify women at risk of breast cancer due to having radiotherapy for Hodgkin Lymphoma when they were younger. The NHS uses this information to make sure that women at risk receive appointments for screening, which in turn helps early diagnosis and can improve quality of life.

For your relatives

Your information and the information from other people with cancer will help improve how our health services provide care to cancer patients and their families in the future. For example, with your permission, cancer information could be shared that could be essential to your relatives to assess their genetic risk of developing cancer.

For the wider population and health system

If more people choose to opt out of cancer registration, then its information will become less complete and less reliable. This will make it less useful to healthcare providers who use the information to allocate resources locally, and less useful for researchers who use it to look for cancer trends, or disease patterns in parts of the country or in certain groups of people or communities.

Researchers use cancer information to find out whether screening and other prevention measures are making a difference. It helps them identify best practice in cancer treatment. Understanding best practice can help improve cancer services across the whole country and beyond.

For the future

20 years ago, no one predicted that thousands of people would benefit directly from cancer registration. However, when the NHS began to use patient information collected by NCRAS to support its genetic counselling services and patient notification exercises, that is exactly what happened.

Why do I have to fill in a form and send proof of identity and address, when I want to opt out of the National Cancer Registration and Analysis Service (NCRAS)?

We use the information on the form you submit to enable us to search our system to make sure we find all data about you that we may have and check we don’t include anyone else’s data by accident.

We ask to see proof of your identity and address to protect your personal data from fraud or someone impersonating you. Unless we are sure that we are dealing with the right person and that the request is genuine we will not be able to confirm if we have their data and begin the process of deleting the data.

We will keep your identity and address documents strictly confidential and destroy them securely once we have completed your request. We will not use the information or documents you send us as part of your opt out for any other purpose.

To find out more about the national data opt and out how it affects cancer data follow this link