National Data Opt Out for Black and Minority Ethnic Communities

We want to make sure you and your family have the best care now and in the future

To do this we may use your confidential patient information to make care better and safer for everyone. It may be used in two different ways:

  • To improve your individual care
  • Research and planning

What is confidential patient information?

Confidential patient information identifies you and says something about your healthcare 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.

How is your confidential patient information used for research and planning?

This information can help to research new treatments, speed up diagnosis and improve health and care.

It is used by the NHS, local authorities, university and hospital researchers, medical colleges, and pharmaceutical companies researching new treatments.

Examples of how information is used for research and planning

Research using confidential patient information from hospital and GP records has shown that 50 percent of people with South Asian, African and African Caribbean origins will develop diabetes by the time they are 80.

This kind of information is invaluable in planning how to prevent or diagnose diabetes early in these groups.

You do not need to do anything if you are happy about how your confidential patient information is used

If you do not want your confidential patient information to be used for research and planning you can choose to opt out securely online or through a telephone service.

To find out more about how your information is used or to choose to opt out, visit www.nhs.uk/your-nhs-data-matters or call 0300 303 5678. To use the Next Generation Text Service (NGTS) dial 18001 followed by 0300 303 5678.

For more information about your data rights, please visit www.ico.org.uk.

Will choosing this opt out affect your care and treatment?

No, your confidential patient information will still be used for your individual care. Choosing to opt out will not affect your care and treatment and you will still be invited for screening services, such as those for bowel cancer.

Where do you have a choice?

If you choose to opt out, your confidential patient information will no longer be used for research and planning. There may still be times when your confidential patient information is used: for example, during an epidemic, where there might be a risk to you or to other people’s health. You can also still give consent to share your data in a specific research project.