How the NHS and care services use your information: the National Data Opt-Out
Find out about how your information may be used for purposes beyond your individual care and how to register your choice to opt out.
NHS England is one of many organisations working in the health and care system to improve care for patients and the public.
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.
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 isn’t 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.
The mandatory implementation of the National Data Opt-Out (NDOO), deadline of 31 March 2022, has been extended until 31 July 2022. We do not intend to extend implementation of the deadline any further.
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.
Organisations will be expected to take note of this new deadline and ensure they are taking the relevant steps to prepare to implement the opt-out by this date,
The following processing for which NHS England is a data controller, are exempt from the national data opt-out:
- Collection of personal data is required under s. 259 of the Health and Social Care Act 2012 following a Direction from NHS England or the Secretary of State. Information about the collections we have directed can be found on our website.
- Collection of confidential patient information about people with learning disabilities and/or autism who are in hospital for mental and/or behavioural healthcare reasons which is disclosed under the following approval under the Control of Patient Information Regulations 2002: Assuring Transformation: Enhanced Quality Assurance Process Data flow (CAG 8-02 (a-c)/2014). These flows continue to operate a separate opt-out mechanism and details of how to opt-out of the Assuring Transformation data collection can be found on the NHS England webpages. This exemption is time limited until the end of the “Building the Right Support Programme”. The validation of invoices for non-contracted activities commissioned by NHS England or CCGs and for contract challenges where commissioners need to verify payment requests from care providers.
- The NHS England National Cancer Patient Experience Survey. This national survey will continue to operate separate opt-out mechanisms and details of how to opt-out of these surveys are provided by the relevant organisations undertaking the surveys.