Your Data Matters

Find out why your data matters to the NHS: https://www.nhs.uk/your-nhs-data-matters/

The NHS wants to make sure you and your family have the best care now and in the future. Your health and adult social care information supports your individual care. It also helps us to research, plan and improve health and care services in England.

There are very strict rules on how this data can and cannot be used, and you have clear data rights. We are committed to keeping patient information safe and will always be clear on how it is used.

You can choose whether or not your confidential patient information is used for research and planning.

Your confidential patient information

Confidential patient information identifies you and says something about your health, care or treatment. You would expect this information to be kept private. Information that only identifies you like your name and address is not confidential patient information and may still be used. For example, to contact you if your GP practice is merging with another.

Using your confidential patient information

Your confidential patient information is used in two different ways:

Your individual care

Health and care professionals may use your confidential patient information to help with your treatment and care.

For example, when you visit your GP, they may access your records for important information about your health.

Research and planning

Confidential patient information is also used to:

• plan and improve health and care services
• research and develop cures for serious illnesses

Most of the time, we use anonymised data for research and planning. So your confidential patient information isn’t always needed.

Who can use your data

The NHS collects health and care data from all NHS organisations, trusts and local authorities. Data is also collected from private organisations, such as private hospitals providing NHS funded care. Research bodies and organisations can request access to this data.

Research bodies and organisations include:

• university researchers
• hospital researchers
• medical royal colleges
• pharmaceutical companies researching new treatments

Who can’t use your data

Confidential patient information is used to support the delivery of health and social care.

Access to confidential patient information will not be given for:

• marketing purposes
• insurance purposes

(unless you specifically request this).

Where you have a choice

If you don’t want your confidential patient information to be used for research and planning, you can opt out of this. If you do opt out, there are some specific situations where your data may still be used. Data that does not identify you may still also be used.

Your confidential patient information will still be used to support your individual care. Any preference you set using this service will not change this.

If you opt out, your decision will only apply within the health and care system in England. Your opt-out will not apply to your health data where you have accessed health or care services outside of England, such as in Scotland and Wales.

Manage your choice

You may use Your Data Matters online service, see link above: you can request a print-and-post form, to make or change your choice at any time. You can also request assistance or make your choice using our telephone service. If you do not wish to opt out, you don’t have to do anything at all.

You can also manage a choice on behalf of another individual by proxy. For example, if you are a parent or guardian of a child under the age of 13.

Ways to manage your choice

Set a choice by phone

To manage your choice online, you must be able to verify your identity. You can’t do this if you haven’t registered an email or mobile number with an NHS practice.

Contact the NHS Digital Contact Centre to verify your identity and discuss your data sharing choices. We may be able to guide you through the service or set a choice on your behalf.

Call: 0300 303 5678

Open: 9am to 5pm Monday to Friday (excluding bank holidays)

Set a choice by print and post

If you are unable to use the online service for any other reason, you can use a paper print-and-post form to set a choice instead.

Manage a choice by post

Set a choice on behalf of another individual

You can also set a choice on behalf of another individual by proxy. For example, a parent may want to set a choice on behalf of their child.

Manage a choice by proxy form