National Data Opt-Out

The national data opt-out implements the opt-out model proposed by the National Data Guardian (NDG), as accepted by the Government and directed by the Department of Health and Social Care. The National Data Guardian’s Review of Data Security, Consent and Opt-Outs (NDG Review) proposed that:
“There should be a new consent/opt-out model to allow people to opt-out of their personal confidential data being used for purposes beyond their direct care”. The NDG’s review carefully considered the scope of the model including its limitation to purposes beyond individual care only and for it to be an opt-out rather than consent model:
“The Review was persuaded that the best balance between meeting these expectations and providing a choice to those who have concerns is achieved by providing an opt-out model. The review concluded that people should be made aware of the use of their data and the benefits; an opt-out model allows data to be used whilst allowing those who have concerns to opt out”.
The review also acknowledged that “Whilst patients have a right under the NHS Constitution to request that their personal confidential data is not used beyond their direct care, there is currently no easy way for them to do that”. The national data opt-out provides a single central mechanism which gives effect to this right.
The Government undertook a public consultation before publishing its response to the NDG review which accepted all the recommendations made by the NDG.

Further information on the use of health records for research and planning can be found by clicking on this link

A number of different channels are available for the public to set a national data opt-out. These are:
• a digital (online) channel accessed via the national data opt-out service.
• for those who need support to set their national data opt-out preference online a digitally-assisted channel is provided that enables members of the public to set a national data opt-out with assistance from NHS Digital staff via the national helpline. The phone number is 0300 303 5678 – Monday to Friday, 9am to 5pm (excluding bank holidays).
• a non-digital (paper based) channel accessed by the national helpline or through forms which can be printed from the webpages, and
• via the NHS App.

There are some points that apply to specific groups with respect to setting a national data opt-out:
• Individuals aged 13 or over are able to set a national data opt-out via the digital, digitally-assisted and non-digital channels.
• Those with parental responsibility are able to set a national data opt-out on behalf of a child under the age of 13 via the non-digital channel only. There is a specific form that allows a choice to be set for up to 6 children at once. Any national data opt-out that has been set by a person with parental responsibility for a child under the age of 13 will remain in place unless and until it is proactively changed.
• Those who have a formal proxy relationship to make decisions on behalf of another adult (either a lasting power of attorney or a court appointed deputy) are able to set a national data opt-out on behalf of that person via the non-digital channel only.
• Individuals in the secure and detained estate (e.g. prisons) are able to set a national data opt-out through the healthcare professionals working in these settings.
• Individuals who have agreed with their GP for their records to be marked as sensitive will be offered the choice to set a national data opt-out through the established processes to set (or remove) a sensitive flag.
• A national data opt-out cannot be set for a deceased patient unless they have explicitly stated this in a last will or testament. This can only be done via the nondigital channel.

A national data opt-out is stored against a person’s individual record on the NHS Digital Spine against their NHS number.