National Data Opt-Out

The National Data Opt-Out (NDOO) allows individuals to choose in specified circumstances if data from their health records is shared for healthcare research and planning.

This service is for individuals and organisations.

For individuals

The service enables individuals to view or change their National Data Opt-Out choice at any time. This can be done:

• through the NHS App by clicking on "Your Health" and selecting "Choose if data from your health records is shared for research and planning"
• online via the NHS data matters page
• by phone, email or post via the manage your choice page

For organisations

Organisations can:

• find out how to ensure they are compliant with the National Data Opt-Out policy
• understand if the data you use or disclose is in scope of the policy
• use the check for National Data Opt-Outs service

For individuals, further information on making a choice can be found on the NHS data matters page.

Information on the policy for organisations can be found in the operational policy guidance document.

This service is mandatory for health and adult social care organisations.

Individuals can view or change their national data opt-out choice at any time by using the online service or by clicking on "Your Health" in the NHS App, and selecting "Choose if data from your health records is shared for research and planning".

Further information can be found at manage your choice.

When an individual sets an opt-out choice, it is recorded against their NHS number on the Spine. It will remain in the system unless the patient changes their mind, even after they have died.

Where the policy applies organisations use the ‘check for National Data Opt-Out’ service to apply the National Data Opt-Out.

Read more about how NHS England records and manages opt-out choices.

This service is live, and has been in active use since 2018. 

As of November 2024 there were 3,619,104 national data opt-outs.

5.40% of the population registered with a GP practice have a national data opt-out.

Up to date information on numbers can be found on the National Data Opt-Out Open Data Dashboard.

National Data Opt-Out is a bronze service, meaning it is operational and supported only during business hours (8am to 6pm), Monday to Friday, excluding Bank holidays.

There are no plans to further develop this service.

Individuals can access the service:

• through the NHS App by clicking on "Your Health" and selecting "Choose if data from your health records is shared for research and planning"
• via the NHS data matters page
• by phone, email or post via the manage your choice page

Organisations can find information on accessing the service via the check for National Data Opt-Outs page.

Health Education England national data opt-out training

Take this brief module on e-learning for health.

National data opt-out: data protection impact assessment

The data protection impact assessment shows how the processing of national opt-out data has been considered in order to identify and minimise any data protection risks.

Compliance with the national data opt-out

The deadline for health and care organisations to comply with national data opt-out policy is now 31 July 2022. It has been extended to enable health and care organisations to focus their resources on the coronavirus (COVID-19) outbreak. Find out what you need to do.

Guidance for health and care staff

Guidance and information for health and care staff about the national data opt-out, including GP practice, nursing, midwifery, care, voluntary and helpline staff.

Supporting your patients - information and resources

Leaflets, posters, recommended text for privacy notices and more information you can use, to help your patients understand their national data opt-out choice.

Information for GP practices

What GP practices need to do to comply with the national data opt-out policy, and provide your patients with appropriate information.

Guidance for detained and secure estates

How to register a national data opt-out  by proxy on behalf of your patients.

Understanding the national data opt-out

Overview of the national data opt-out policy, to help you understand how opt-outs work and which data uses or disclosures are in scope.

National data opt-out statistics

Statistical analysis of national data opt-outs and how they might affect data used for research and planning.

National Data Opt-Out: GDPR information

Why and how we process your data in the National Data Opt-Out and your rights.

National data opt-out: equality impact assessment

The equality impact assessment demonstrates how the service complies with the public sector equality duty.

National Disease Registration Service(external link, opens in a new tab)

The national data opt-out does not apply to the data collected by the National Disease Registration Service on cancer, rare diseases or congenital anomalies. If you do not want the NDRS to collect your data you need to apply to opt-out with them separately.