Data management; national data opt-out programme

The national data opt-out is a service that allows people to opt out of their confidential patient information being used for research and planning, giving patients the opportunity to set their opt-out preference and comes with useful leaflets, posters and other resources for health and care staff to use when informing patients

Introduced May 25, the national data opt-out enables individuals to opt-out from the use of their data for research or planning purposes. This is to bring processes and data storage in line with recommendations from the National Data Guardian in her review of data security, consent and opt-outs.

The service will initially be in beta, while NHS Digital refines the service design for optimal effectiveness, and by 2020 all health and care organisations will be required to apply national data opt-outs where confidential patient information is used for research and planning purposes.

The national data opt-out replaces the previous ‘type 2’ opt-out, which required NHS Digital not to share a patient’s confidential patient information for purposes beyond their individual care. Any patient that had a type 2 opt-out has had it automatically converted to a national data opt-out from May 25, 2018, and has received a letter giving them more information and a leaflet explaining the new national data opt-out.

During the beta phase, which ends this month (October 2018), NHS Digital will continue to collect and convert type 2 opt-outs, and send a letter to these patients explaining that any recently set type 2 opt-out has been automatically converted to a national data opt-out.

The national data opt-out choice can be viewed or changed at any time by using the online service at www.nhs.uk/your-nhs-data-matters.

 Useful links

Patients can find out more and set their opt-out choice at nhs.uk/your-nhs-data-matters.

Health and care staff can download leaflets, posters and other resources to use when informing patients.

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