The national data opt-out is a service that lets patients choose that their confidential patient information is only used for their own individual care, and not for research and planning.
Use of confidential patient information for individual care is not affected by the national data opt-out.
Data use for individual care
Patient data is recorded so that it can be used by health and care professionals to care for patients, make diagnoses and decisions about the patient's care. This is referred to as 'for individual care and treatment', or 'direct care'. These uses of patient data are not covered by the national data opt-out.
Data sharing for individual care and treatment includes:
- passing information from one care setting to another - for example when a GP refers a patient to a hospital for tests
- local shared care records - put in place to help local health and care organisations share data with each other, for example to provide out of hours services or to improve patient safety when the patient is seen in different settings
- the summary care record - a summary of important patient information, containing at a minimum details of allergies and medications, which improves safety when patients are seen in a different care setting to their home GP practice
There are other elements of patient care which rely on the wider processing of data, but that should also be treated as individual care, and so not within scope of national data opt-out policy. These include:
- population screening programmes - for conditions such as cervical and bowel cancer, which the UK National Screening Committee (UK NSC) has advised that the NHS should offer
- risk stratification used for case-finding - when carried out by a provider involved in an individual's care
- local audit of the safety and quality of care - when carried out by the professionals and team responsible for the care of the patient
Data use for research and planning
Data can only be used for purposes beyond individual care and treatment in specific circumstances. There must be a legal basis for any disclosure of data, and the use must benefit health and care.
Planning uses may include:
- understanding what care and treatment patients need
- predicting what services will be needed in the future, so funding and resources can be put into place
- understanding the outcomes of patient care to make sure patients are being cared for safely and effectively
Sometimes health and care services work in partnership with commercial organisations to plan and provide services. For example, health and care analysis companies can be employed by NHS trusts and care organisations to measure effectiveness and identify improvements. The NHS organisation providing the data has all legal responsibility for it and puts a contract in place to cover the data sharing arrangements.
Research purposes include:
- looking at diseases and illnesses and their treatments to see whether there are side effects or risk factors associated with certain medications
- identifying risk factors for disease and its severity, such as age, gender, ethnicity, where patients live, or another health problem like high blood pressure or obesity
- monitoring the effects of a new drug or type of treatment to see if it's effective and whether it has side effects
Pharmaceutical companies and commercially-funded research studies use confidential patient data for research purposes. They can use it to develop new treatments and better care pathways to improve patient care. This can also reduce costs to the health and care system by making treatment more effective. Most of these studies use explicit consent.
The national data opt-out covers use and disclosure of confidential patient information for research and planning. If you are planning on disclosing data to another organisation, you will need to comply with the policy. You also need to comply if you are changing the way you use confidential patient information, to use it for research and planning internally, when it was previously only used for individual care and treatment.