Understanding NHS data sharing: What you need to know

Healthwatch Somerset
3 days ago
3 min read

The NHS and social care use your health information to care for you and also to improve services. They keep it safe and private. If you don’t want your data used for planning or research, you can choose to opt out.

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Why is data shared?

Shared data helps you and the NHS. For example:

It brings your records together to improve your care
It was used to find the first coronavirus treatment
It supported vaccine research

Hand holding phone with NHS App on screen. Blue text: "Do more with the NHS App!" Features listed. App store logos at bottom.

Your individual care

Health and care staff may use your confidential patient information to help with your treatment and care. For example, when you visit your GP, they may look at your records for important information about your health.

Research and planning

Where possible, the NHS uses data that does not identify you.

Sometimes, confidential patient information is needed to:

Plan and improve services
Research and develop cures for serious illnesses

What is confidential patient information?

It’s when two types of information from your health records are combined:

Something that identifies you (e.g., your name)
Something about your care or treatment (e.g., medicine you take)

Identifiable information on its own (like your name and address) is used to contact you and is not confidential patient information.

What will be collected?

Names and addresses are not collected. Details like NHS numbers, postcodes, and dates of birth are replaced with codes through pseudonymisation. This means:

• No one can identify you without a special key

• The key is only released for legal reasons, such as clinical trials or care.

Diagram showing anonymisation vs pseudonymisation of patient info. Details are color-coded to show the difference between identifyinginformation and medically relevant information. It includes terms like age, address, NHS no. — Image taken from Understanding Patient Data: ‘What happens to health data - A guide to large datasets’. (Available under a creative commons license)

The way the NHS use people’s personal information is protected by laws called UK General Data Protection Regulations (UK GDPR) and the Data Protection Act (DPA).

Who manages NHS data?

NHS Digital is the NHS provider of data and IT systems for the NHS in England.

Is NHS data sold?

NHS Digital never sells your data. They charge a processing fee to cover the cost of preparing and delivering data through the Data Access Request Service (DARS). This fee is for the work, not the data itself.

Any organisation that wants access to NHS data must:

Prove they have a legal reason to use it.
Show they will keep it safe and secure.
Pass checks by an independent review group before any data is shared.

You can see who receives NHS data by visiting the Data Uses Register.

Your choice

If you're happy with your confidential patient information being used for research and planning you don't need to do anything.

How to opt out

If you do not want your data shared you can opt out of sharing your health records.

Your choice will not affect your care.

You have two options:

1. Stop your GP sharing data with NHS Digital (Type 1 Opt-out)

Download and return the Type 1 Opt-out form (DocX) to your GP practice. You can do this anytime and change your mind later.

2. Stop NHS Digital sharing your data further (National Data Opt-out)

Online: Manage your choice
Phone: 0300 303 5678 (Mon–Fri, 9am–5pm)
Post or Email: Fill in the opt-out form (PDF) and email it to enquiries@nhsdigital.nhs.uk or post it to: