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.
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.”
Type 2 Opt-Out
Before 25th May 2018, GP practices would record a patient’s preferences to opt out of having their personal confidential data being used for research or planning via a Type 2 Opt-Out. As of October 2018, all patients who had a Type 2 Opt-Out applied to their GP record had their preference transferred to the National Data Opt-Out. The list of patients with a Type 2 Opt-Out was transferred from the GP practices control to a database which is held by NHS Digital. Practices no longer hold a list of these patients.
Patients can now record their preferences via NHS App and on the ‘Your Data Matters’ website.
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.
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.
In order to register a Type 1 Opt-Out please complete and return the attached form to the surgery:
The National Data Opt-Out – NDOO
The National Data Opt-Out replaced the Type 2 Opt-Out Programme in May 2018. All patients who do not wish to have their personal confidential data used for planning or research will be excluded from these uses. Patients with an NDOO applied will still have their data extracted from the GP practice, but it will not be used for planning or research purposes.
NHS Digital collect personal confidential data from GP practices and secondary care providers to instruct planning and research. All data collected is pseudonymised before sharing with Integrated Care Boards or other organisations.
Summary Care Record Opt-Out
The NDOO and Type 1 Opt-outs are not the same as opting out of having details uploaded to the SPINE which is the Summary Care Record (SCR) Opt Out. If patients wish to opt out of having a summary care record, they will need to complete a different opt-out. Further information on the SCR is available on the NHS Digital website.