GDPR/Privacy Notice

What is National Data Opt Out?

The national data opt-out allows a patient to choose if they do not want their confidential patient information to be used for purposes beyond their individual care and treatment – for research and planning. Patients, or people acting for them by proxy, have control over setting or changing their own opt-out choice, and can change their mind at any time. In most cases health and care staff won’t be involved.

A type 1 opt out prevents information being shared outside a GP practice for purposes other than direct care.  This opt-out request can only be recorded by your GP practice by completing the Type 1 Opt-Out Preference form.

A type 2 opt out prevented information being shared outside NHS Digital for purposes beyond the individual’s direct care.

From 25 May 2018 the type 2 opt-out has been replaced by the National data opt-out – NHS Digital

Type 2 opt-outs that were recorded on or before 11 October 2018 have been automatically converted to national data opt-outs.

Patients who can choose to set a national data opt-out

Anyone who has an NHS number and has registered for care or treatment with the NHS in England can set an opt out if they wish to, even if they don’t currently live in England.

Patients who can set an opt-out choice for themselves

If a patient is aged 13 or over, they can set their own opt-out choice using the online service, the telephone service, the NHS App, or ‘print-and-post’, completing a form by hand and sending it in.

Patients who can set an opt-out choice on behalf of someone else

Someone can set an opt-out choice on behalf of a patient, by proxy, if:

they are the parent or legal guardian of the patient, who is a child aged 12 or under

they have a formal legal relationship with the patient, for example they have legal power of attorney or are a court-appointed deputy

They can only do this using the ‘print and post’ service.

Changing an opt-out choice

An opt-out choice can be changed at any time by the patient or their proxy.

Using the online service

Patients can set their own opt-out choice by visiting www.nhs.uk/your-nhs-data-matters using any internet enabled device. So that the service can confirm their identity, they will need to provide:

their NHS number, or their postcode (as registered with their GP practice)

their mobile phone number or email address provided previously at a GP practice or other NHS service

The online service is available 24 hours a day, 7 days a week.

Using the NHS App

Patients who have registered for the NHS App using NHS login can set a national data opt-out using the app.

Using the telephone service

Patients can set their own opt-out choice by calling 0300 303 5678.

Calling this number should cost no more than calls to a normal landline number.

The telephone service is available 9am to 5pm, Monday to Friday, apart from on English bank or public holidays.

Using ‘print-and-post’

If a patient is unable to use the online or telephone service, or would prefer not to, they can compete a paper form and post it.

The form can be downloaded from www.nhs.uk/your-nhs-data-matters or requested by calling the telephone service on 0300 303 5678.

Patients who previously had a type 2 opt-out

Where a patient had a type 2 opt-out registered on or before 11 October 2018, this was automatically converted to a national data opt-out and if they were aged 13 or over they were sent a personal letter explaining the change and a hand out with more information about the national data opt-out.

Patients can be reassured that their choices will continue to be respected. If they want to change their choice, they can use the national data opt-out service to do this.

Patients who have a type 1 opt-out

Some patients will have a type 1 opt-out registered with their GP practice, which indicates they do not want their confidential patient information leaving the practice for research and planning purposes. These existing type 1 opt-outs will continue to be respected until the Department of Health and Social Care conducts a consultation with the National Data Guardian on their removal.