The National Data Opt-Out
he national data opt-out was introduced on 25 May 2018, enabling patients to opt out from the use of their data for research or planning purposes, in line with the recommendations of the National Data Guardian’s review of Data Security, Consent and Opt-Outs.
You can view or change your national data opt-out choice any time, by visiting: www.nhs.uk/your-nhs-data-matters.
By March-end 2022 all health and care organisations are required to be compliant with the national data opt-out policy, where confidential patient information is used for research and planning purposes. NHS Digital and Public Health England are already compliant and are applying national data opt-outs. Find out more about compliance.
National Data Opt-Out Privacy Notice
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 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 www.nhs.uk/your-nhs-data-matters. At this page you can learn more about confidential information, the benefits of sharing data and find out about scenarios when the opt-out will 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); and
https://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 opt-out choice at any time.
Health and care organisations have until 31/03/2022 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.