National data opt-out - Implementation approach Published September 2017 (Review November 2017)

The Implementation Stages Stage 1 – Raising awareness about the national data opt-out and how preferences can be recorded and changed Stage 2 – Providing information on how and when to uphold the national data opt-out (for those organisations that share personal identifiable information for purposes beyond an individuals care) Implementation will be approached in two stages Stage 1 will be the priority activity for March 2018 Stage 2 work to engage with organisations so they understand and are prepared for being able to apply national data opt-outs to data they share for purposes beyond the individual’s care and treatment will start in early March 2018 and run through to March 2020. This is in line with the approach communicated in the Government response that the requirement for organisations to uphold national data opt-outs will be phased in through to March 2020 NHS Digital will be the first organisation ready to support the national data opt-out  in March 2018 Other organisations will be readied for upholding in a phased approach to give them time to prepare Phasing will be based on organisation types as this will provide a coherent way to explain to patients how their national data opt-out will be applied

Stage 1 - Awareness and setting Implementing a private on-line solution from September 2017 to enable testing of the digital and non digital solutions, processes and supporting materials for the setting of a national data opt-out Raising awareness across all health and social care organisations to enable understanding of the national data opt-out what it means, when it applies; and how it can be set and unset Undertaking wide spread engagement across the health and care system, so the system is ready for when all patients will be able to access the on-line solution using NHS.UK from March 2018 Stage 1 is about raising awareness of the national data opt-out and how opt-out preferences can be set and changed Private Beta testing will be conducted between the period September 2017 to January 2018, this will test the national online solution developed for the setting and changing of national data opt-out preferences along with testing the Call Centre route for setting and changing national data opt-out preferences for those patients that do not have access or do not wish to use the online solution The National Data Opt-out Programme will engage as widely as possible with some circa 57000 organisations across the health and care system in the period from September 2017 through to March 2018 The engagement will be mainly to ready the health and care service to enable conversations between patients and health and care professional about national data opt-outs, data sharing and the ways in which patients can set and change their opt-out preferences along with signposting to where more resources and materials will be available

Stage 2 - Upholding the national data opt-out Developing technical solutions to enable national data opt-outs to be upheld based on further work with health and care organisations to understand their needs Developing materials to enable health and care organisations to be aware of the need to consider and understand when to apply national data opt-outs Raising awareness across all health and care organisations of the technical solution(s) available to enable national data opt-outs to be upheld Assisting health and care organisations in determining which technical solution(s) to use, how to implement them and how to use them The National Data Opt-out Programme will engage with health and care organisations to help them understand when a national data opt-out needs to be applied, and how a national data opt-out can be applied before sharing data for purposes beyond the individual’s care and treatment

Engagement Engagement on implementation will be based on: Communicating with organisational leaders to ask for their support in leading and taking ownership for ensuring national data opt-out awareness is promoted and understood within their organisation Promoting specific communications with health and care professionals as part of the wider communications around understanding data sharing Providing communications that can feed into organisations at all levels using local and regional networks, aimed at both health and care professionals and administration staff. The focus will be on proving a basic understanding of the national data opt-out and where to find and access additional materials GP practices will be regarded as a priority as most patients: are likely to come into contact with them; and/or will treat them as a first port of call if they have concerns or further questions The National Data Opt-out Programme will work to engage at all levels within organisations through utilising any existing networks, regular communication channels such as bulletins and any regular local/regional meetings As well the National Data Opt-out Programme will look to identify where specific meetings or other possible forums such as Webinars need to be put in place to meet any local/regional demands

Materials to support the national data opt-out Will take similar approach to Patient Online providing a range of communication, information and guidance resources online for access by both patients and those working in the health and care service The national data opt-out will be communicated alongside communications on understanding data sharing in the health and care system and the benefits (and risks) this creates The work on a data sharing campaign strategy and development is taking place outside of the National Data Opt-out Programme Information materials will be made available with the expectation they can be adapted and tailored to suit local needs and be available through local channels as well as being hosted and available through national websites Will concentrate on developing content that can be used in a range of materials and this will be focused on the national data opt-out 3 layers of content will be made available: Level 1 simple easy read information – these will be made available Level 2 more detailed explanations and answers to more complex questions for those that want fuller understanding – these materials will be hosted and available from a national website but could be taken and made available through local channels as well Level 3 technical guidance and answers to very specific questions – these materials will be hosted and available from a national website These products and materials will communicate the opt-out and help raise awareness across the health and care system and help patients and the workforce to understand: How an opt-out can be recorded When an opt-out will be applied How an opt-out can be applied The intent is to provide information on data sharing and benefits rather than promote the national data opt-out though ensuring it is clearly referenced through these materials and for those that want to know more they are able to easily identify and access where more information is held The National Data Opt-out Programme are also looking at what can be done in parallel to support messaging and approaches to communicating on General Data Protection Regulations We expect communication materials to point out to other key supporting resources such as “Understanding Patient Data” which has case studies on data sharing and information on “Supporting Conversations” with patients and is supported by the Wellcome Trust The Royal College of General Practitioners are also being commissioned to develop supporting implementation materials

Getting the message right – a wider dialogue “Understanding Patient Data” Why: To support better conversations about uses of health and care information Aim: demystify the language that surrounds data sharing and make it more accessible to patients Task: Developed a vocabulary for key words/phrases; developing a comprehensive bank of case studies; and mapping where data goes to support public understanding Launched: 6 April 2017 Following the publication of the NDG review Wellcome Trust started developing an independent initiative on the use of patient data https://understandingpatientdata.org.uk/ , its aim is to encourage more effective communication about how patient data is used.  Understanding Patient Data was set up to support conversations with the public, patients and healthcare professionals about health and care data. It provides objective evidence about: how and why data can be used for care and research what’s allowed and what’s not allowed what options patients have how personal information is safeguarded.

More information National Data Opt-out Programme web pages https://digital.nhs.uk/national-data-opt-out Understanding Patient Data - Wellcome Trust https://understandingpatientdata.org.uk National data opt-out enquiries & requests to join mailing list to keep in touch newoptoutenquiries@nhs.net To be kept informed of further developments about the national data opt-out including news of any events taking place and any new or updated materials being made available please subscribe to our mailing list by contacting us at: newoptoutenquiries@nhs.net