NATIONAL DATA OPT OUT PROGRAMME
NHS Digital is developing a national data opt-out system to give patients the opportunity to make an informed choice about whether they wish for their personal identifiable information to be used for research and planning purposes. The national data opt-out will not apply to, or affect the necessary usages of data for the patient’s individual care and treatment.
The national data opt-out is introduced on 25 May 2018, providing a facility for individuals to opt-out from the use of their data for research or planning purposes. This is provided in line with the recommendations of the National Data Guardian in her Review of Data Security, Consent and Opt-Outs. The service will initially be in beta, while we ensure the service design is optimal.
Individual preferences will be collected from 25 May and by 2020 all health and care organisations are required to have applied these preferences in all research and planning situations in which confidential patient information is used. NHS Digital will apply these preferences with immediate effect.
The national data opt-out will replace the previous ‘type 2’ opt-out, which required NHS Digital to refrain from sharing a patient’s confidential patient information for purposes beyond their direct care. Any person with an existing type 2 opt-out will have it automatically converted to a national data opt-out from 25 May 2018 and will shortly receive a letter giving them more information and a leaflet explaining the new national data opt-out. We will continue to collect and convert type 2 opt-outs during the beta phase.
What is the opt-out?
The opt-out system will allow patients to directly express an opt-out preference of their personal identifiable information being used for:
- research purposes – such as finding ways to improve treatments; and
- planning purposes – such as data use to improve delivery of health services.
The national data opt-out choice can be viewed or changed at any time by using the online service at NHS.uk - Your NHS Data Matters.