Opting out

If you don’t want us to collect and store the details about your cancer you can opt out. If you decide to opt out, it will not effect the care you are receiving. 

You can do this by downloading this form which can be returned by email to optout@phe.gov.uk.  Please note: information sent to this email address will not be encrypted.  Or write to:

Director
National Cancer Registration and Analysis Service
Public Health England
Wellington House
133-155 Waterloo Road
London SE1 8UG

The Opt Out Process

The Opt Out form requires your name, address, date of birth, NHS number, where, and when you were last treated.   We need these details to make sure our searches of the register are effective, and that we remove the right person’s information.

We also need proof of identity and address. Acceptable documents, include

  • Photo identification (a copy of your passport/driving licence)
  • Proof of address (a copy of a utility bill)

We will only use the information given on the form in connection with your opt-out request. We will destroy the copies of your identification documents once we have removed your cancer information from our databases.

Once we have received your completed form and identification documents, our Caldicott Guardian* will offer to talk to you directly. This is to make sure that you are fully aware of the potential value of your cancer registry information to you, your relatives and the wider population.

After the conversation we will, as far as is practical, delete any information about you that we have. We will then put safeguards in place to make sure that we do not collect or keep any more information about you that we may receive in future.

If we have shared personal information about you with other permitted organisations, we will, as far as is practical, 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.

If afterwards, you change your mind about your exclusion from cancer registration please contact us.

* A Caldicott Guardian is a senior person responsible for protecting the confidentiality of patient and service-user information and enabling appropriate information sharing.  The Caldicott Guardian plays a key role in ensuring organisations such as the NHS and Public Health England satisfy the highest practical standards for handling patient identifiable information.