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. Your health records contain a type of data called confidential information. There are two types of confidential data:
- something that can identify you
- something about your health care or treatment
Your confidential data can be used to help with your treatment and care. Your confidential data may also be used to plan and improve health and care services and for research to help develop cures for serious illnesses.
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.
National Data Opt-Out
The National data op-out is a service that allows patients to opt out of their confidential patient information being used for research and planning.
To find out more about the benefits of data sharing, how data is protected, or to make/change your opt-out choice visit www.nhs.uk/your-nhs-data-matters
Click here for materials to support you.
On this web page you will:
- See what is meant by confidential patient information
- Find examples of when confidential patient information is used for individual care and examples of when it is used for purposes beyond individual care
- Find out more about the benefits of sharing data
- Understand more about who uses the data
- Find out how your data is protected
- Be able to access the system to view, set or change your opt-out setting
- Find the contact telephone number if you want to know any more or to set/change your opt-out by phone
- See the situations where the opt-out will not apply
You can also find out more about how patient information is used at:
https://www.hra.nhs.uk/information-about-patients which covers health and care research); andhttps://understandingpatientdata.org.uk/what-you-need-know (which covers how and why patient information is used, the safeguards and how decisions are made)
You can change your mind about your choice at any time.
Data being used or shared for purposes beyond individual care does not include your data being shared with insurance companies or used for marketing purposes and data would only be used in this way with your specific agreement.
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.
Download a copy of the patient leaflet
Download Opt out Form: Type1 Opt-outform.docx
The NHS Constitution
The NHS Constitution establishes the principles and values of the NHS in England. It sets out the rights patients, the public and staff are entitled to. These rights cover how patients access health services, the quality of care you will receive, the treatments and programmes available to you, confidentiality, information and your right to complain if things go wrong.
NHS Digital collects health information from the records health and social care providers keep about the care and treatment they give, to promote health or support improvements in the delivery of care services in England.
Correcting inaccurate information
If you believe that we hold inaccurate information in your health or care record you should contact your health or care provider in the first instance, to discuss this further. This could be your GP practice or the health or social care staff that provided or are currently providing your treatment and care.