National Data Opt-Out
Health and care organisations hold huge amounts of patient Information. This information is essential for enabling high quality care and is beneficial for many other purposes.
Patients have the right to opt-out of their personal confidential data being used for purposes beyond their direct care. All health and care organisations must respect this right.
The National Data Opt-Out (NDOO) is a UK initiative that allows patients to choose whether their confidential health information is used for research and planning purposes beyond their individual care. It provides patients with control over how their data is used and ensures that organisations respect their choices.
Direct care is defined by the National Data Guardian review as:
“A clinical, social, or public health activity concerned with the prevention, investigation and treatment of illness and the alleviation of suffering of individuals. It includes supporting individuals’ ability to function and improve their participation in life and society. It includes the assurance of safe and high-quality care and treatment through local audit, the management of untoward or adverse incidents, person satisfaction including measurement of outcomes undertaken by one or more registered and regulated health or social care professionals and their team with whom the individual has a legitimate relationship for their care.”
The National Data Opt-Out will still allow patients’ personal confidential and special category data to be gathered from their GP surgery by NHS Digital but will be excluded from planning or research activities.
Type 1 Opt-Out
Patients may opt-out of having their personal confidential data being extracted or shared by the GP practice for purposes other than their individual direct care. You can change your choice at any time.
It is the responsibility of the GP practice to record Type 1 Opt-Outs on the patient’s record. Type 1 Opt-Outs only apply to GP data.
The opt-out will apply unless:
- the patient has consented to a specific data use.
- the data is required by law.
- where there is an overriding public interest for the disclosure
examples would be
- Reporting of gun and knife wounds
- Patients’ fitness to drive and reporting concerns to the DVLA
- Risks to public health such as monitoring and control of communicable diseases.
- Adverse reactions to vaccine.
- Infection/food poisoning acquired from food or water supply
- Court orders
- Coroner investigations
- the data is anonymised in line with the ICO code of practice on anonymisation.
- a specific exemption has been granted.
What is the opt-out?
The opt-out system will allow patients to directly express an opt-out preference of their personal identifiable information being used for:
- research purposes – such as finding ways to improve treatments; and
- planning purposes – such as data use to improve delivery of health services.
How can I view or change my choice ?
The national data opt-out choice can be viewed or changed at any time by using the online service at NHS.uk – Your NHS Data Matters.
Other ways to make a choice
You can also make or change a choice for:
- yourself by phone, email or post
- someone else (either a child under 13 or someone you can legally make decisions for) by email or post
Email: enquiries@nhsdigital.nhs.uk
Postal address:
National Data Opt Out Contact Centre
NHS England
Freepost
PO Box 16738
Redditch
B97 9PT
You can also make or change a choice for yourself by phoning the NHS Digital Contact Centre.
The phone number is 0300 303 5678 – Monday to Friday, 9am to 5pm (excluding bank holidays).
A member of staff can:
- help you use the online service
- make or change a choice on your behalf
- print and post a form to you
Where can I find further information?