Information about you is used in a number of ways by the NHS and Social Care services to support your personal care and to improve health and social care services for everyone.
The Health and Social Care Information Centre (HSCIC) is the national NHS organisation with a legal responsibility to collect data as people make use of NHS and social care services. The data is used both at a local level and nationally to help with planning, managing your care, supporting research into new treatments, identifying trends and issues and so forth, and is used to try to make services better for all.
You can, however, choose not to have information about you shared or used for any purpose beyond providing your own treatment or care.
Your right to opt out
You can choose not to have anything that could identify you shared beyond your GP practice (Type 1 objection).
You can also choose for the HSCIC not to share information it collects from all health providers any further (previously known as Type 2 objection, now National Data Opt-out).
The National Opt Out
It is a service that enables the public to register to opt out of their confidential patient information being used for purposes beyond their individual care and treatment. It was introduced for the health and social care system in England on 25 May 2018. The public can change their national data opt-out choice at any time via www.nhs.uk/your-nhs-data-matters or by calling NHS Digital contact centre on 0300 3035678 or via the NHS App.
National data opt-outs apply to a disclosure when an organisation e.g. a research body confirms they have approval from the Confidentiality Advisory Group (CAG) for the disclosure of confidential patient information held by another organisation responsible for the data (the data controller), such as an NHS Trust or GP practice.
The CAG approval is also known as a section 251 approval and refers to section 251 of the National Health Service Act 2006 and its current Regulations, the Health Service (Control of Patient Information) Regulations 2002. The NHS Act 2006 and the Regulations enable the common law duty of confidentiality to be temporarily lifted so that confidential patient information can be disclosed without the data controller being in breach of the common law duty of confidentiality.
In practice, this means that the organisation responsible for the information (the data controller) can, if they wish, disclose the information to the data applicant (e.g. research body) with section 251 approval without being in breach of the common law duty of confidentiality.
National data opt-outs do not apply where:
- information being disclosed is anonymised in accordance with the Information Commissioner’s Office anonymisation code of practice
- the individual has given their consent for their information to be used for a particular purpose, (e.g. a specific research study).
- there is an overriding public interest in the disclosure, (i.e. the public interest in disclosing the data overrides the public interest in maintaining confidentiality), also referred to as the ‘public interest test’.
- there is a legal requirement that sets aside the common law duty of confidentiality or the information is required by a court order
A good example is that for COVID-19 pandemic response there is no right to op-out in which is covered by point 3:-
Patients cannot opt out of receiving COVID related texts, which is explained in the nHSD notice which states:-
What if I have opted-out of my data being used (national data opt-out)?
The national data opt-out does not apply to disclosure of confidential patient information if it is being used to protect public health, for example to:
- diagnose communicable diseases
- control or prevent their spread
- deliver and monitor vaccination programmes
- manage risks of infection from food or water supplies or the environment
Read a full explanation of the lawful basis of such disclosures in 6.2:Communicable diseases and risks to public health in the operational policy guidance document.
As such we can only give assurance that if the Type 1 and National Opt out have been applied by the patient we will respect that in terms of adding the opt-out (type 1) code to the record and this will at system level block inappropriate sharing from the GP system with the limitations above, and if she has applied for the national opt-out NHDS and the hSCIC will not extract data unless:-
- information being disclosed is anonymised in accordance with the Information Commissioner’s Office anonymisation code of practice
- the individual has given their consent for their information to be used for a particular purpose, (e.g. a specific research study).
- there is an overriding public interest in the disclosure, (i.e. the public interest in disclosing the data overrides the public interest in maintaining confidentiality), also referred to as the ‘public interest test’.
- there is a legal requirement that sets aside the common law duty of confidentiality or the information is required by a court order
That is the only assurance we can give.
Opt Out Form
Click here to download the opt out form