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Choose if data from your health records is shared for research and planning

Contents

  1. Overview
  2. How confidential patient information is used
  3. When your choice does not apply
  4. Make your choice

Information:

There have been posts on social media with false information about opting out of sharing your data with the NHS.

Here’s what you need to know:

  • There is no 30 September deadline for opting out of sharing your data. You can opt out at any time.
  • NHS Digital will never sell your data.
  • There are strict rules about how the NHS can use your data. It’s only shared securely and safely.
  • Shared data helps the NHS. It has been used to find the first treatment for coronavirus and for vaccine research.

Read NHS Digital’s response to the false information about the national data opt-out

Your health records contain a type of data called confidential patient information. This data can be used to help with research and planning.

You can choose to stop your confidential patient information being used for research and planning. You can also make a choice for someone else like your children under the age of 13.

Your choice will only apply to the health and care system in England. This does not apply to health or care services accessed in Scotland, Wales or Northern Ireland.

This information is also available in other languages and formats.Information:

Coronavirus update

To help the NHS respond to coronavirus, your information may be used for coronavirus research purposes even if you have chosen not to share it. Any information used will be shared appropriately and lawfully.

What is confidential patient information

Confidential patient information is when 2 types of information from your health records are joined together.

The 2 types of information are:

  • something that can identify you
  • something about your health care or treatment

For example, your name joined with what medicine you take.

Identifiable information on its own is used by health and care services to contact patients and this is not confidential patient information.

How we use your confidential patient information

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

Confidential patient information might also be used to:

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

Your choice

You can stop your confidential patient information being used for research and planning. Find out how to make your choice.

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

Any choice you make will not impact your individual care.

You can choose whether your confidential patient information is used for research and planning. To find out more visit nhs.uk/your-nhs-data-matters.

You do not need to do anything if you are happy about how your confidential patient information is used. You can change your choice at any time.


Type 1 opt-out: medical records held at your GP practice

You can also tell your GP practice if you do not want your confidential patient information held in your GP medical record to be used for purposes other than your individual care. This is commonly called a type 1 opt-out. This opt-out request can only be recorded by your GP practice.


Type 2 opt-out: information held by NHS Digital

Previously you could tell your GP practice if you did not want us, NHS Digital, to share confidential patient information that we collect from across the health and care service for purposes other than your individual care. This was called a type 2 opt-out.

The type 2 opt-out was replaced by the national data opt-out. Type 2 opt-outs recorded on or before 11 October 2018 have been automatically converted to national data opt-outs.

Read more about the collection and conversion of type 2 opt-outs.