National data opt-out - Implementation approach Published February 2018 (Review April 2018)

Important Note This is one of a series of Information Packs that have been put together to provide information on the National Data Opt-out. For the latest information on the programme, including key information for organisations to help them be ready for 25 May 2018, please refer to packs D onwards.

Implemented in two stages Stage 1 - Readying for setting opt-outs Previously undertaken general awareness work with health and care organisations Engagement focus now is on preparing health and care organisations to be ready for the introduction of the national data opt-out and being able to handle queries from patients Stage 2 – Upholding Providing information on how and when to uphold the national data opt-out The requirement for organisations to uphold the national data opt-out will be phased in through to 2020, starting with NHS Digital in May 2018 Stage 1 is about raising awareness of the national data opt-out and how opt-out preferences can be set and changed. The National Data Opt-out Programme are engaging as widely as possible with some circa 57000 organisations across the health and care system. Engagement from January 2018 will be 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 1 - Awareness and setting 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 widespread engagement across the health and care system, so the system is ready for when patients will be able to access the on-line solution from 25 May 2018 Stage 1 is about raising awareness of the national data opt-out and how opt-out preferences can be set and changed. The National Data Opt-out Programme are engaging as widely as possible with some circa 57000 organisations across the health and care system. Engagement from January 2018 will be 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 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. The National Data Opt-out Programme will also 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 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 The national data opt-out will be communicated as part of communicating about data use and sharing in the health and care system to provide greater transparency and understanding A wider benefits of data sharing campaign strategy is being developed and delivery will take place outside of the National Data Opt-out Programme 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 the 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 Guardian review https://www.gov.uk/government/publications/review-of-data-security-consent-and-opt-outs Government response Your Data, Better Security, Better Choice, Better Care National Data Opt-out Programme web pages & to join our mailing list https://digital.nhs.uk/national-data-opt-out Understanding Patient Data - Wellcome Trust https://understandingpatientdata.org.uk 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 via the contact form on our web pages.