3. Setting an opt-out

The national data opt-out is based on a single question that covers all uses of data beyond individual care.  Individuals are provided with information about the national data opt-out to enable them to make an informed decision and are required to verify their identity prior to being presented with the opt-out question:

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

This question was developed and tested with the public to ensure that they understood the choice being made. 

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.

An Equality Impact Assessment (EIA) has been undertaken to ensure that no groups are disadvantaged by the national data opt-out. This is published on the national data opt-out programme webpages.

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.
• 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, (parents and legal guardians) 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 non-digital channel.

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

In some circumstances individuals may be allocated a new NHS number. The rules of how any existing national data opt-outs are applied to the new NHS number and in relation to other changes of circumstances are outlined in Appendix 4: Changes to NHS number.