Data Opt Out
National Data Opt Out – Notes
What is the National Data Opt Out?
The National Data Opt Out service allows patients to opt out of their confidential patient information being used beyond their individual care and treatment (e.g. being used for research and planning).
It allows patients to choose to withhold their confidential patient information used for purposes beyond their individual care and treatment.
The service allows patients to set, view and change their choice and this can be accessed by the patient through a website run by NHS Digital.
Patients who do not wish to opt out do not need to do anything.
What is confidential patient information?
Confidential Patient Information is categorised as:
- Identifiable, or likely identifiable (e.g. from other data in possession of the recipient);
- Given in circumstances where the individual is owed a duty of confidence; and;
- Conveys some information about the physical or mental health or condition of an individual.
It might include things like name and address or demographic data along with any clinical data.
When does the National Data Opt Out Policy apply?
When any healthcare organisation which processes and/or disseminates data that originates with the health and social adult care system in England, it is required to consider if the national data opt outs should be applied to disclosures of confidential patient information for purposes beyond individual patient care.
The policy applies when confidential patient information is used for purposes beyond the individual’s care and treatment. Additionally, it also applies in the following circumstances when:
- Confidential information is used for purposes beyond an individual’s care and treatment such as researching new treatment or planning for future services
- The legal basis to use the data is approval under regulation 2 or 5 of the Control of Patient Information Regulations 2002, Section 251 of the NHS Act 2006
- Regulation 2 – Processing for medical purposes relating to diagnosis or treatment of cancer;
- Regulation 5 – Processing for general medical and research purposes.
This includes those patients receiving NHS Healthcare in a private health facility, adult social care providers and private/voluntary sector organisations providing care on behalf or through an NHS contract.
When does the National Data Opt Out Policy Not Apply?
The policy does not apply when the data is being used:
- When the data relates to the individual care and treatment of a patient;
- When data is provided under a mandatory legal requirement (such as a court order, or where CQC use their statutory powers, safeguarding concerns;
- Where there is an overriding public interest (on a case by case basis in conjunction with discussion between practice manager, Caldicott Guardian and Data Protection Officer);
- When the patient has given explicit consent (even if this was before signing the National Data Opt Out);
- When data is provided to the following organisations who operate a separate opt out mechanism:
- The National Cancer Registration Service;
- The National Congenital Anomalies and Rare Diseases service
- UK Biobank
- Where the data is not confidential patient information;
- Where the data is used for specific purposes (screening and immunisation data – this includes screening in pregnancy/new born babies/diabetic eye screening/cervical screening/breast screening/bowel cancer screening/AAA screening), risk stratification for case finding or information to support payment/invoice validation);
- Through the provision of privately funded health care;
- To records uploaded to the Summary Care Record.
- To records uploaded to CHIE (previously the Hampshire Health Record)
Who needs to be compliant with the policy?
All health and care organisations, including those regulated by the CQC including ambulance services, adult care homes, hospitals, secure facilities, services in the home, doctors, GPs and dentists, child health, community and mental health services as well as Defence Medical Services, opticians and pharmacists
How does a patient register their choice?
Patients must use the National data Opt Out service to log whether they wish for their information to be shared.
You can do this online, but will require:
- An NHS Number or a postcode registered with your GP Surgery
- Mobile phone number or an email address that has been provided to a GP or another NHS service
Additionally, you will also need to be over 13 years of age (people with parental responsibility can act as a proxy for anyone under this age.
Your choice will take up to 21 days to take effect once registered on the website.
Alternatively, you can telephone 0300 303 5678 to register a national data opt out (9am-5pm – Monday to Friday). People acting as a proxy must use this telephone service.
Where can a patient make their choice?
Patients need to logon to the national website to make their choice at the following website: https://www.nhs.uk/your-nhs-data-matters/manage-your-choice
You can find out additional information by searching for “National Data Opt Out” or “Your Data Matters to the NHS” through a search engine, or looking on the Information Commissioners website at www.ico.org.uk