National Data Opt-out Programme
The national data opt-out and why it's needed
The National Data Guardian (NDG) review of data security and consent proposed 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 review was published in July 2016 and recommended the development and implementation across the health and care system of a simple national opt-out which can be easily understood and accessed by individuals.
Subject to the government response to the NDG review, we're proposing to develop a national data opt-out, for patients to opt out of sharing their personal information for reasons other than their individual care and treatment. The national data opt-out will begin to go live on-line and in a non-digital version later this year.
The national data opt-out won't apply to people's individual care and treatment.
Our aim is to make sure health and care professionals have the information, tools and materials they need to help their patients make an informed decision about how their individual data will be used.
We'll also make sure that patients know how to access the national data opt-out and that it's transparent how their preferences are being applied across the health and care system.
The national data opt-out is part of a wider vision that aims to build patients' trust and confidence in how health and care services look after patient data and use it for the benefit of health and care, as well as assuring data security, across the health and care system.
How the opt-out will work
There will be online digital options available to patients to set their opt-out preference and patients who cannot or do not want to opt out online will be offered a non-digital alternative.
The patient's opt-out preference will be stored in a central repository and systems will be made available so that it can be securely accessed and applied when personal information is being shared between organisations for purposes beyond an individual's care and treatment.
What healthcare professionals need to know
All health and care professionals need to be aware of the national data opt-out and either be able to provide or direct patients to where they can find out more information. Anyone responsible for providing data to another organisation for purposes beyond the individual's care and treatment will also need to know how to uphold a patient's opt-out.
For example, if you're a GP, your patients may ask you questions about the opt-out. Over time you'll find a range of materials on this page aimed at supporting you to uphold the opt-out and for you to download to communicate the new opt-out to your patients. These materials will be available in a variety of formats.
When the opt-out is happening
The national data opt-out will be introduced in a phased way, starting with the ability for patients to register their opt-out preferences later this year. The ability for the health and care system to be able to uphold those opt-out preferences is expected to start with NHS Digital and be achieved incrementally by all health and care providers through to 2020.
Where to find information about the opt-out
We'll be developing a range of products and materials in collaboration with health and care professionals and making these available over time on this page. We'll also be sending communications as the work develops and progresses. These materials will be designed to support you in explaining the opt-out to patients and upholding it within your own organisation.