Conclusion and next steps

Key issues include:

• accessibility of the system to allow everyone to set a preference
• the need to reach certain groups whom health and social care may find it difficult to engage
• potential for disadvantages to arise through high rates of opt-out in certain groups
• potential for disadvantage due to digital exclusion
• difficulty for some individuals to verify their identity
• accessibility of communications in order to support people making an informed choice

These issues have been picked up and tackled as the service has been developed, and have been monitored through the public beta phase to ensure that the service is ready to become fully operational. The specifics are listed below.

1. Extensive user research has tested the accessibility of the online system both prior to the launch of the public beta and during the public beta phase. Both accessibility of language and usability has been tested and refined.
2. An accessibility workshop took place in collaboration with the Public and Patient Voice Team in NHS England in October 2017 to ensure our approach to accessibility could be tested with various voluntary sector partners, who have continued to be involved in developing accessible materials which have been tested through the public beta phase.
3. Work on verification of identity explored the reasons why particular groups including older people, asylum seekers, Gypsy Travellers, homeless people, people in custody and carers could struggle to verify their identity as part of the opt-out process, which has led to changes in verification processes such as the nature of the information requested and the development of a non-digital route to set a preference. During the public beta phase authentication approaches have been revised to ensure that the needs of more people are met as the service becomes fully operational.
4. Arrangements and specific communications have been put in place with Defence Medical Services (DMS) to ensure service personnel can access the online service.  The DMS register of patients is not directly linked to PDS so specific arrangements have been made and tested to enable identify verification processes to work for service personnel.  Further work is planned linked to the replacement of the IT system for DMS patients which will further improve the capability for maintaining demographics data on PDS.
5. The provision of different channels to register an opt-out is a key mitigating factor in minimising disadvantage.  Digitally-assisted and non-digital routes for setting preferences have been designed with feedback from this EIA, and these services have been shaped further during feedback from the public beta phase. The EIA has also identified some key groups where a more bespoke approach is needed e.g. prisoners in detained estates.  This approach has been successfully piloted and will be rolled out across detained estates as the service becomes fully operational.  The NHS App provides an additional mechanism for accessing the service that may be preferable for some groups.
6. The public engagement strategy set out how communication needs have been identified for different groups to demonstrate reasonable steps have been taken to meet the needs of all, and an engagement plan was drawn up to ensure that groups who might be more likely to opt out are engaged with, so that the reasons why particular groups may be more likely to opt-out are explored and steps have been taken to mitigate these, so that people are better able to make an informed choice.
7. The communications strategy for the service has been specifically designed to address some of the issue identified in this EIA. A segmentation approach has been developed that seeks to target materials across a wide range of individuals based on their specific needs.  Materials have been designed using a layered approach that is widely accessible and meets a variety of needs in terms of the level of detail and amount of information required. These materials have been evaluated during the public beta phase of the service and will form part of the communications strategy going forward as the service becomes fully operational.
8. The policy development work has focused on minimising disadvantage and has sought stakeholder and user views into key decisions as appropriate e.g. young people were asked about the minimum age, Age UK were asked about the proxies policy etc.  A check and challenge process was employed which sought to capture these issues and bring together a robust evidence base in support of the policy decisions made in developing and deploying the service. 

Key findings from the Equality Impact Assessment have been embedded into ongoing work carried out to establish the national data opt-out service, including the communications strategy, public engagement strategy and further development and testing of the online, digital-assisted and non-digital processes through the public beta phase. However, it is important to note that the EIA will continue to be monitored and reviewed as the service becomes fully operational and the impact on particular groups becomes clearer. This EIA will therefore continue to be reviewed on a six-monthly basis and will be subject to a formal review before the programme ends in March 2020.