Your Data Matters to the NHS
Information about your health and care helps us to improve your individual care, speed up diagnosis, plan your local services and research new treatments. The NHS is committed to keeping patient information safe and always being clear about how it is used.
How your data is used
Information about your individual care such as treatment and diagnoses is collected about you whenever you use health and care services. It is also used to help us and other organisations for research and planning such as research into new treatments, deciding where to put GP clinics and planning for the number of doctors and nurses in your local hospital. It is only used in this way when there is a clear legal basis to use the information to help improve health and care for you, your family and future generations.
Wherever possible we try to use data that does not identify you, but sometimes it is necessary to use your confidential patient information.
You have a choice
You do not need to do anything if you are happy about how your 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. You can change your mind about your choice at any time.
Will choosing this opt-out affect your care and treatment?
No, choosing to opt out will not affect how information is used to support your care and treatment. You will still be invited for screening services, such as screenings for bowel cancer.
What do you need to do?
If you are happy for your confidential patient information to be used for research and planning, you do not need to do anything.
To find out more about the benefits of data sharing, how data is protected, or to make/change your opt-out choice visit:
Useful Links / Downloads
Why is there an opt-out?
The National Data Guardian conducted a review into the use of NHS data in 2016, and examined the most appropriate model for collecting and using patient data across the NHS. She concluded that a single opt-out model should be adopted across the health and care system in England, and the Government has accepted her recommendations. You can find out more about why an opt-out model is most appropriate, rather than one based on an opt-in or consent.
What does it apply to?
The national data opt-out applies to the use of confidential patient information for research and planning purposes.
The national data opt-out does not apply where:
- data is shared for your individual care
- there is a risk to public health or data is required for monitoring and control of infectious diseases, for example during an epidemic
- there is an overriding public interest, for example:
- reporting of gun wounds in line with GMC guidance
- there is a legal requirement to share information, for example:
- investigations by regulators of professionals (eg General Medical Council investigating a registered doctor’s fitness to practice)
- NHS fraud investigations
- notification of food poisoning
- you have consented to take part in a specific project
- anonymised data is used.
Your national data opt-out will initially be applied by NHS Digital from May 2018, with Public Health England following shortly after. By 2020, all health and care organisations across England must apply the national data opt-out.
What is the opt-out question?
The national data opt-out offers the following choice:
Your confidential patient information can be used for improving health, care and services, including:
- planning to improve health and care services
- research to find a cure for serious illnesses
I allow my data to be used for research and planning:
- Yes [DEFAULT POSITION]
If you do not set a choice, it will be assumed that you are happy for your confidential patient information to be used for research and planning.
What is 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 considered confidential patient information and may still be used: for example, to contact you if your GP practice is merging with another.
How can I opt out?
You can set your choice online at: nhs.uk/your-nhs-data-matters
You will need:
- your NHS number (a 10 digit number that you should be able to find on any document sent to you by the NHS, for example a hospital referral letter or prescription)
- to have an email address or phone number registered with an NHS service.
Alternatively you can call the helpline: 0300 303 5678
Or download a form here to opt out via post.
If you want to set a national data opt-out for your children, or where you have a formal proxy to make decisions on behalf of someone else, you can download a form here or phone the helpline on 0300 303 5678.
What if I’ve already opted out?
If you have previously opted out of NHS Digital sharing your confidential patient information, you don’t need to do anything. You should receive a letter from NHS Digital by August 2018, explaining that they will transfer your opt-out to the new national data opt-out.
If you want to change your mind, you can update your choice by visiting the website: nhs.uk/your-nhs-data-matters, or by calling 0300 330 9412
Is the national data opt-out UK-wide?
The national data opt-out applies to confidential patient information collected by the NHS in England only. Scotland has a separate opt-out, offered through Spire.
Where can I find out more?