National Data Opt-Out and use of NHS data.
Whenever you use a health or care service, such as attending Accident & Emergency or using Community Care services, important information about you is collected in a Care or Patient record for that service. Collecting this information helps to ensure you get the best possible care and treatment.
The information collected about you when you use these services can also be used and provided to other organisations for purposes beyond your individual care, for instance to help with:
• improving the quality and standards of care provided
• research into the development of new treatments
• preventing illness and diseases
• monitoring safety
• planning services
This may only take place when there is a clear legal basis to use this information. All these uses help to provide better health and care for you, your family and future generations. Confidential patient information about your health and care is only used like this where allowed by law.
Most of the time, anonymised data is used for research and planning so that you cannot be identified in which case your confidential patient information isn’t needed.
You have a choice about whether you want your confidential patient information to be used in this way. If you are happy with this use of information you do not need to do anything. If you do choose to opt out your confidential patient information will still be used to support your individual care.
To find out more or to register your choice to opt out, please visit Your NHS Data Matters. 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:
NHS UK Information About Patients (which covers health and care research); and
Understanding Patient Data What You Need to 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.
Health and care organisations have until March 2021 to put systems and processes in place so they can be compliant with the national data opt-out and apply your choice to any confidential patient information they use or share for purposes beyond your individual care.