TBC's opt-out policies

National Data Opt-Out

Your health records contain a type of data called confidential patient information. This data can be used to help with research and planning.

You can choose to stop your confidential patient information being used for research and planning. You can also make a choice for someone else like your children under the age of 13.

Your choice will only apply to the health and care system in England. This does not apply to health or care services accessed in Scotland, Wales or Northern Ireland.

Any person registered on PDS (and consequently with an NHS number allocated to them) is able to set a national data opt-out. This covers the majority of patients who have received health or care services in England and, therefore, have data about them in the health and care system in England.

A child is able to set their own opt-out from age 13 which aligns with the minimum age at which children can give their consent to participate in digital services as set out in data protection legislation.  This is not based on any test of competence. Children under 13 and those who lack capacity are not able to set an opt-out themselves.  In these cases, individuals who have a formal, legal relationship to act on behalf of them (i.e. somebody who has parental responsibility, a lasting power of attorney or court appointed deputy) are able to set an opt-out on their behalf by proxy.  Special arrangements are also in place to ensure that those detained in prisons and secure settings and those where their record is marked as “sensitive” are able to set an opt-out if they wish to.

The national data opt-out applies to data that originates within the health and adult social care system in England. The following organisations are considered to be part of the health and adult social care system in England and must consider whether they are required to apply the national data opt-out:

• Department of Health and Social Care and other national bodies e.g. NHS England
• NHS and Local Authorities providing health and adult social care services in England; and
• other organisations or persons who provide health or adult social care services in England under contracts agreed with NHS and Local Authorities

This definition is aligned to the Health and Social Care Act Section 250 which is the definition of organisations required to have regard to published information standards. Such organisations need to assess whether any of their data disclosures require the opt-out to be applied – some organisations may not have any data uses that are in scope.

For the avoidance of doubt confidential patient information generated or processed in the following organisations and services must consider national data opt-outs when processing data for purposes beyond individual care in line with the wider policy:

• health service providers including NHS foundation trusts and trusts, mental health and community trusts, ambulance trusts, primary care providers including GPs, dentists, ophthalmic services and pharmacists
• private providers including Any Qualified Providers (AQPs) who provide health and adult social care services which are funded or under contract with a public body, for example NHS England, CCG or local authority)
• Defence Medical Services (DMS)
• Healthcare services provided across the secure and detained estate (e.g. prison healthcare)
• public health including local authority public health functions and public health providers, for example school nursing
• adult social care services including care that is arranged or provided by local authorities and adult social care providers (i.e. where this is regulated by the Care Quality Commission (CQC)) (see below for Children’s Social Care), and
• any other organisation who handles and discloses health and adult social care information as a data controller including commissioners, for example Clinical Commissioning Groups (CCGs) or national bodies, for example Department of Health and Social Care, NHS Digital, NHS England, Public Health England (PHE), Health Education England, National Institute for Health and Care Excellence, Medicines and Healthcare Products Regulatory Agency, Care Quality Commission (CQC), NHS Improvement, , NHS Business Services Authority (NHS BSA), NHS Shared Business Services (NHS SBS), NHS Resolution, NHS Blood and Transplant, Human Fertilisation and Embryology Authority, Human Tissue Authority, Health Research Authority, NHS Counter Fraud Authority and Healthcare Safety Investigation Branch.

Statement

Your confidential patient information can be used for improving health, care and services, including:

• planning to improve health and care services
• research to find a cure for serious illnesses

Your decision will not affect your individual care and you can change your mind anytime you like.

I allow my confidential patient information to be used for research and planning

https://www.nhs.uk/your-nhs-data-matters/