The national data opt-out was recommended in the National Data Guardian’s (NDG) Review of Data Security, Consent and Opt-Outs, which was published in July 2016. The Government response to the NDG review: Your Data: Better Security, Better Choice, Better Care, published in July 2017 accepted all the recommendations made by the NDG. The NDG recommended that:
“The National Data Guardian recommends a new consent/opt-out model to give people a clear choice about how their personal confidential data is used for purposes beyond their direct care”. (p6, 1.25)
The national data opt-out is based on the 8 principles set out in the NDG's report:
- You are protected by the law
- Information is essential to good quality care
- Information is essential for other beneficial purposes
- You have the right to opt out
- The opt out will be respected by all organisations that use health and social care information
- Explicit consent will still be possible
- The opt-out will not apply to anonymised data (ICO code)
- The opt out will not apply to exceptional circumstances
One of the key considerations behind the NDG’s review was the need to address patient concerns and confusion about how their confidential patient information (CPI) is used, and to ensure that patients are empowered to have a say in how their data is used. An opt-out model was recommended as a mechanism which would enable patients to have a choice to stop their CPI being used for purposes beyond their individual care and treatment, for example for research and planning.
The NDG’s review also recognised the strong case for sharing CPI including the importance of data sharing for research:
“Information essential for high quality health and care….to improve the safety of care, including through research, to protect public health, and support innovation”. (p6, 1.26)
To ensure this message is understood by patients when they set a preference for sharing their data, the national data opt-out is offered within the wider context and message of “Your NHS Data Matters”, with supporting patient handouts and more details on-line.