National data opt-out: equality impact assessment

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.

The Health and Social Care Act 2012 introduced explicit legal duties to give regard to the need to reduce health inequalities in both access to health care and health outcomes. The Equality Act 2010 requires public authorities, in the exercise of their functions, to have due regard to the need to eliminate discrimination, advance equality of opportunity and foster good relations between different people with protected characteristics. An EIA is conducted both to demonstrate compliance with the public sector equality duty and to ensure that the need to reduce health inequalities is given due regard.

This EIA is particularly focused on:

1. ensuring there is equality of opportunity to register a national data opt-out;
2. assessing any equality risks from differential national data opt-out rates, including whether there might be high rates of national data opt-outs within particular groups and any potential impact this could have;
3. ensuring that individuals are able to make an informed choice;
4. identifying any specific policy decisions that may impact upon particular groups with protected characteristics.

The Equality and Health Inequalities Unit and the Patient and Public Voice team in NHS England have helped to identify key stakeholders, with whom the programme has engaged and worked with to consider the impact of key policy decisions on particular groups with protected characteristics and those who face health inequalities.  Key evidence, sourced through literature reviews and stakeholder engagement, has also been considered as part of this Equality Impact Assessment. An accessibility workshop was also held in October 2017, with invitees including representatives from key groups in relation to the list of groups with protected characteristics or facing health inequalities. A full list of organisations engaged with, and key literature consulted, is included within Appendix 2.

The channels by which patients can set their national data opt-out preference are described briefly below. This provides the context for assessing the potential impacts/barriers of accessing the service for certain groups.

Patients can access the national data opt-out service online, using a smartphone, tablet or personal computer.  In order to ensure verification of identity, the online system requires that the patient has a mobile phone or email address that is registered on PDS. The patient is asked to input their name, date of birth, and either their NHS number or postcode to verify their identity and the patient is sent an authentication “one-time passcode” via their mobile phone or email

Patients who cannot, or do not want to, opt-out using an online service can use a digitally-assisted route by calling the national contact centre. Through this route, they may be supported to use the online system above or may have an opt-out set for them by the contact centre staff. In both cases they are still required to verify their identity and authenticate via a one-time passcode to a PDS-registered mobile or email

A non-digital route is also available, where patients can set an opt-out through a paper-based process via the national contact centre. This enables patients who have neither a mobile phone nor an email address to register their preference.  Patients submit a form with information including their NHS number to the national contact centre. If they are unable to provide an NHS number, patients can submit copies of documents confirming their name and address in order to verify their identity. The non-digital route also provides a route for formal proxies, including those with parental responsibility for a child under the age of 13, to register an opt-out on behalf of another person(s).

Testing has commenced on an NHS App which will also allow the setting of national data opt-outs.  Users of the app will need to undergo identify verification in order to set up an “NHS Login”: this includes submitting a copy of a photo identity document, such as a driving licence, along with their name, postcode and date of birth. They’ll also be asked to submit a short video of themselves. Once the information has been checked, then the NHS Login will enable access to a range of healthcare apps and websites, including the NHS App for the national data opt-out.  Once set up and logged into the NHS App there are no additional checks needed for registering or changing their national data opt-out preference.  The NHS App is due to be launched early in 2019.