What is the NHS National Data Opt-Out?

What is the NHS National Data Opt-Out?

The NHS National Data Opt-Out lets you choose whether your confidential patient information is used for research and planning purposes outside your direct care. It applies in England and helps you control how your health data is shared by NHS organisations and other health and social care bodies.

This opt-out is separate from your medical treatment. Your doctors, nurses and other health professionals can still use your information to care for you safely and effectively.

What information does it apply to?

The opt-out covers confidential patient information. This is information that could identify you, such as your name, address, NHS number or details about your health and treatment.

It does not stop information being used when the law allows it for other important reasons. For example, some data may still be shared to protect public health, support NHS services, or where there is a legal requirement.

How is the data used?

NHS data is used to help improve services, plan hospital care, and support medical research. This can lead to better treatments, shorter waiting times and more effective use of NHS resources.

Before the National Data Opt-Out was introduced, many people were not aware that their data could be used in this way. The opt-out gives adults and some young people more choice over those uses.

How do you set or change your choice?

You can set your National Data Opt-Out online through the NHS website. If you cannot use the internet, you can also contact NHS support for help with making your choice.

You can change your preference at any time. If you opt out now, you can opt back in later if you decide you want your data to be used for research and planning again.

Who can opt out?

Most people aged 13 and over can usually make their own decision, although some younger people may also be able to opt out depending on their circumstances. Parents or those with legal responsibility may also be able to make a choice for children under 13.

If you are unsure whether the opt-out applies to you or someone you care for, the NHS website can help explain the rules in more detail.

Why might you choose to opt out?

Some people are happy for their data to be used if it helps improve care for everyone. Others prefer to keep their information private unless it is needed directly for their treatment.

There is no right or wrong choice. The important thing is that you understand what the opt-out does, and decide based on what feels right for you.

Frequently Asked Questions

What is the NHS National Data Opt-Out?

The NHS National Data Opt-Out is a service that allows patients in England to opt out of their confidential patient information being used for research and planning purposes.

Who can use the NHS National Data Opt-Out?

Anyone aged 13 or over and registered with an NHS GP in England can set a National Data Opt-Out choice.

What data does the NHS National Data Opt-Out apply to?

It applies to confidential patient information gathered from health and care services in England.

What does opting out mean?

Opting out means your confidential patient information will not be used for research and planning, though it will still be used for your individual care.

Does the opt-out affect individual care?

No, opting out only prevents your data from being used for research and planning, not for your care or treatment.

How can I set my National Data Opt-Out choice?

You can set your choice online, through the NHS App, by phone, or by post.

Can I change my NHS National Data Opt-Out choice later?

Yes, you can change your opt-out preference at any time.

Is the NHS National Data Opt-Out available outside England?

No, it is only available to people registered with a GP in England.

What is considered confidential patient information?

Confidential patient information is information that identifies you and tells someone something about your health or care.

What uses are covered by the NHS National Data Opt-Out?

The opt-out covers the use of data for research and planning but not for your individual care.

Is my choice about the National Data Opt-Out kept private?

Yes, your choice is recorded securely and is only accessed when necessary to check your opt-out status.

Are there any exceptions to the National Data Opt-Out?

Yes, the opt-out does not apply in cases like safeguarding, public health emergencies, or required by law.

Does opting out stop my data from being used for clinical trials?

The opt-out applies to data used for research in general, but your individual consent may still be required for clinical trials.

How is my data used if I do not opt out?

If you do not opt out, your confidential patient information may be used to improve healthcare services and research health conditions.

Will opting out affect my NHS care or access to services?

No, opting out will not affect the care or treatment you receive from the NHS.

How do I find out if I have opted out?

You can check your status online at the NHS website, via the NHS App, or by calling the helpline.

Do I have to renew my National Data Opt-Out?

No, your choice remains in place until you change it.

Can parents or guardians opt out on behalf of children?

Parents or legal guardians can set the opt-out for children under the age of 13.

When was the NHS National Data Opt-Out introduced?

The NHS National Data Opt-Out was introduced in May 2018.

Where can I get more information about the NHS National Data Opt-Out?

You can find more information on the NHS website or by contacting the NHS National Data Opt-Out helpline.

Useful Links

Useful Links : What is the NHS National Data Opt-Out?

NHS: National Data Opt-Out

Official NHS information about your data and the National Data Opt-Out.

NHS Digital: National Data Opt-Out

Detailed NHS Digital page explaining the National Data Opt-Out programme.

NHS Digital: Your Data Choices

Information about how and why you can opt out of sharing your confidential patient information.

Understanding NHS National Data Opt-Out (NHS Confederation)

Overview and implications of the NHS National Data Opt-Out from the NHS Confederation.

Macmillan Cancer Support: NHS Data Opt-Out

How Macmillan supports patient data choices and explains the National Data Opt-Out.

Patient Information: NHS Data Choices (Cancer Research UK)

Cancer Research UK guidance about the National Data Opt-Out and your choices.

NHS South, Central and West CSU: National Data Opt-Out

Regional NHS information covering the National Data Opt-Out for patients.

Important Information On Using This Service

This website offers general information and is not a substitute for professional advice. Always seek guidance from qualified professionals. If you have any medical concerns or need urgent help, contact a healthcare professional or emergency services immediately.

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