This is an Equality Impact Assessment (EIA) for the national data opt-out service. The national data opt-out applies to the disclosure of confidential patient information for purposes beyond individual care across the health and adult social care system in England. A new system has been developed to support the national data opt-out which gives patients more control over how their confidential patient information is used. A member of the public can set a national data opt-out via a number of channels that include online, digitally assisted and non-digital channels. The system lets patients exercise their right to make an informed choice about whether their confidential patient information is only used for their individual care and treatment or also shared for research and planning purposes. Any person registered on the Personal Demographic Services (PDS), the national system which holds NHS numbers and other demographic details, and who consequently has an NHS number allocated to them can set a national data opt-out.
This EIA for the national data opt-out service has been conducted to demonstrate compliance with the public sector equality duty and to ensure that the service has given due regard to the need to eliminate discrimination, advance equality of opportunity and foster good relations between different people. The assessment was begun at an early stage in order to shape the development of the service and has continued to identify impacts. Findings from the Equality Impact Assessment have been embedded into ongoing work carried out to develop the national data opt-out service, so that key issues could be addressed and mitigating actions taken where necessary.
This document presents the findings of the EIA as the national data opt-out service draws towards the end of a public beta testing phase. It describes the research and engagement that has been conducted, the impacts that have been identified and the mitigating actions that have been put into place and which will also be delivered through future work as the service becomes fully operational. This EIA will be updated at six-monthly intervals until March 2020 when it will be subject to another formal review. In this way, as more feedback is received from users of the service and from those upholding the opt-out, any new impacts can be identified and assessed.