National Data Opt Out
The national data opt-out was introduced on 25 May 2018, enabling patients to opt out from the use of their data for anything other than their individual care and treatment, for example research or planning purposes, in line with the recommendations of the National Data Guardian in her Review of data security, consent, and opt-outs. This review aimed at strengthening the safeguards for keeping health and care information secure and ensuring the public can make informed choices about how their data is used.
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 of 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.
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.
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 is not needed.
To find out more or to register your choice to opt out, please visit www.nhs.uk/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 Health Research Authority(which covers health and care research); and
- Understanding Patient Data (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.
As set out in the Operational Policy Guidance, the opt-out applies to the disclosure of confidential patient information for purposes beyond an individual’s direct care across the health and care system in England, unless an exemption has been granted.