NHS Digital is developing a new system to support the national data opt-out which will give patients more control over how identifiable health and care information is used. The system will offer patients and the public the opportunity to make an informed choice about whether they wish their personally identifiable data to be used just for their individual care and treatment or also used for research and planning purposes.
National data opt-out programme
A new consent/opt-out model for data sharing to enable people to make an informed decision about how their individual data will be used.
The national data opt-out
Choosing to opt-out
Patients and the public who decide they do not want their personally identifiable data used for planning and research purposes will be able to set their national data opt-out choice online. We will provide a non-digital alternative for patients and the public who can't or don't want to use an online system. Individuals can change their mind anytime. Existing Type 2 opt-outs (the option for a patient to register with their GP, to prevent their identifiable data leaving NHS Digital) will be converted to the new national data opt-out. Patients with type 2 opt-outs will be informed of this change individually.
NHS Digital is developing the system now. Patients and the public will be able to use the system from 25 May 2018. All health and care organisations will be required to uphold patient and public choices by March 2020. The national data opt-out will be introduced alongside the new data protection legislation.
Information for health and care professionals
If you work in health and care, the introduction of the national data opt-out will mean you have two new areas of responsibility. You will need to be aware of the service in case patients ask you about it and in time you will be expected to uphold these preferences and advise patients. In the Resources section below there is an information pack (Pack E1) and readiness checklists, containing information about what organisations need to do now to be ready for the national data opt-out being available from 25 May 2018.
Everyone working in health and care needs to be aware of the national data opt-out so that they can inform and advise patients on where to go for more information about data use and the national data opt-out. The information shared by health and care staff will support patients to make an informed decision about how their personally identifiable data will be used.
Upholding patient preferences
Health and care professionals who send patient identifiable data to other organisations for reasons other than a patient's individual care and treatment will need to know how and when to uphold a patient's preference. More information will be provided on this in due course.
We've prepared presentations that can be edited to be relevant to your local settings, to help you inform the health and care professionals you work with about the national data opt-out.
Pack F Patient journey - coming soon
Organisation readiness checklists
These checklists - one for GP practices and one for other health and care organisations - can help you understand what your organisation should do to be ready for 25th May 2018.
Join the national data opt-out mailing list
Fill in the national data opt out team contact form to be added to our mailing list.
Background to the national data opt-out
The National Data Guardian, Dame Fiona Caldicott, recommended a new opt-out model for data sharing in her Review of data security, consent and opt-outs in 2016. The aim is to allow patients to make an informed decision about how their personal data will be used. It is part of a vision to improve patients' trust and confidence in how data is looked after by the health and social care system. The National Opt-out ties in with other work on data security and making sure data is only used for the benefit of people's health and care.