Organisational attendees

• National Voices
• Office of the National Data Guardian
• Association of Medical Research Charities
• Healthwatch
• Understanding Patient Data
• Academy of Medical Royal Colleges
• NHS Frimley Integrated Care Board
• Information Commissioner’s Office
• NHS England
• Department of Health and Social Care
• Academy of Medical Royal Colleges
• Royal College of General Practitioners
• NHS Confederation
• Patients Association
• Nottingham University Hospitals Trust

Apologies received

• UNISON

Open Actions and decisions recorded

Meeting notes

Welcome and introductions

The chair welcomed all members to the call and noted any apologies.

Introductions of new members took place as well as noting any conflicts/declarations of interests.

The chair advised the group that, due to an administration error, the papers for the meeting were not sent out in advance.

Minutes and actions from previous meeting

Due to the delay in paper circulation the group agreed for the FDP Check and Challenge minutes, from 19 April 2024, to be review offline and any comments or concerns to be provided by Friday 24 May 2024.

The chair took the members through the FDP Check and Challenge action log. Particular actions noted:

• Action CAC-A36: The chair asked for the FDP Check and Challenge minutes for the April 24 and May 24 meeting to be published ahead of the upcoming NHS ConfedExpo.
• Action CAC-A30: The Large-Scale Public Engagement team advised that the discussion outcomes for the deliberation including opt-outs could be brought forward to provide an update to the group in September 24. The Large-Scale Public Engagement team advised that they have a steering group as part of their governance structure in which products for deliberations are being taken to and offered to share information on the steering group to assure FDP Check and Challenge members in the representation and responsibility of the steering group. The chair queried whether discussion materials can be shared with FDP Check and Challenge members ahead of deliberation sessions. The Large-Scale Public Engagement team advised that the approach of bringing back the outputs of the Large-Scale Public Engagement Programme into the FDP Check and Challenge Group is the right approach.

Action: April 2024 FDP Check and Challenge minutes to be reviewed and comments provided by Friday 24 May 2024.   

Action: Update action CAC-A30 to bring deadline forward to September 2024.

Action: Large-Scale Public Engagement team to share details on the Steering Group within their programme governance structure and involved in deliberation sessions.

NHS Federated Data Platform (FDP) programme and NHS Privacy Enhancing Technology update

The NHS FDP Programme delivery director provided an update to the group on the NHS FDP Programme.

The NHS FDP Programme continues to focus on transition of existing products and local pilot organisations, onto FDP tenants. On the 10 May 2024, the programme celebrated the first 2 sites to go live with the FDP local instance. Transition is due to complete in June 2024 and then the programme will focus on working with new sites to adopt nationally commissioned local products that are suitable for adoption.

Further national FDP products have transitioned, this has included underlying infrastructure and the national data model which will enable the programme to build products on top of which the team are working through relevant information governance publications. The programme continues to work towards a target of 71 in December 2024, and continues to drive forward a strong demand pipeline into 2025.

The group questioned whether there are any plans to capture the benefits of the transitions. The FDP head of communications and engagement outlined that there are plans in place to publish the benefits on a regular basis. The FDP Programme delivery director advised that some sites have already been utilising the products of which the programme tracks every action that happens in the system and how that impacts elements such as waiting lists, theatre utilisation, and compare this to baseline metrics. The FDP head of communications and engagement outlined that work is currently underway with the FDP Programme Benefits team to develop a benefits dashboard which will be published on the NHS England website. The dashboard will have aggregated data against each product to highlight the benefits being realised. This will be updated on a monthly cadence and will look to move towards more granular information in due course.

The group queried how the FDP Programme is aligned to the Get It Right First Time (GIRFT) Programme given its similarities in objectives. The FDP Programme director advised that they have been working with the chair of the GIRFT Programme to ensure improvement programmes align. The FDP programme director outlined that the GIRFT Programme own the FDP care coordination suite inpatient product from a policy perspective, which ensures a collaborative approach between the 2 programmes.

The FDP head of communications and engagement reported on key communication and engagement activities. The FDP programme has been working closely with the Patient Public Engagement and Comms Advisory Panel (PPECAP) on developing the privacy notice templates to ensure it is accessible to public audiences. Feedback from PPECAP has been integrated into the templates and is being used to inform future iterations of the privacy notices. Last month, the FDP Programme had a session with Tech UK to start a conversation on how the programme fosters a multi-vendor landscape for product development.

The FDP Programme Communication and Engagement team has been working closely with the Large-Scale Public Engagement team to feed in examples of FDP case studies to help facilitate deliberation discussions. It was reported that this was well received and helped provoke useful conversations.

An event was held for chief clinical information officer (CXIO) NHS leaders which was an opportunity to learn more about the FDP and understand the technology and functionality behind it. The FDP head of communications and engagement reported that it was a good opportunity to engage with colleagues across the system and understand the impact of the FDP. This included identifying organisations who have offered their support in developing case studies for the public domain.

The FDP head of communications and engagement outlined that the key activities planned for the next month include:

• Privacy enhancing technology (PET) ‘easy-to-read’ guidance workshop to take place to create the most accessible form of information on PET.
• Development of 3 case studies and 2 videos to provide further information on the FDP for the public domain.
• Publication of the FDP benefits dashboard.
• Supporting a visit from the HSJ to an organisation to understand the impact of the OPTICA discharge product.
• FDP Programme presence at the NHS ConfedExpo event, with speaker events and a stall to support engagement with colleagues across the NHS.
• FDP Programme attendance to the Caldicott Council event to provide an update on the FDP Programme.

The FDP head of communications reported no escalations regarding social media but did highlight the current spread of misinformation across social media channels regarding opt-out which is not related to FDP and has not been identified as being within FDP context.

Action: To share meeting presentation pack with Check and Challenge members.

Privacy enhancing technology (PET) public explainer feedback

The FDP head of communications and engagement presented an overview of the development of the PET easy-to-read guidance.

The aim of the guidance is to provide information on PET that can be easily ingested by the public domain as there is recognition that privacy and confidentiality are main drivers that impact how people feel about the use of data across the NHS.

There are a number of reasons why a PET easy-to-read guide is being developed, which include:

• privacy by design is at the heart of the NHS FDP
• PET is software that helps protect patient information
• NHS PET is one of the ways that we can reassure the public (and stakeholders) that their data is used in a safe and secure way, and only where there is a legal basis to do so
• we’re committed to being transparent and providing meaningful and accessible information
• there will be phased implementation of NHS PET so we need to clearly explain how it is used now, and how it will be used in the future

The FDP head of communications an engagement described the multi-layer approach to accessible PET content which flows from the FDP privacy notice to PET as part of FDP, plain English explainer web page, and then the official easy-read guide to PET. The 2 pieces of live work at the moment is the development of the plain English explainer. Feedback on both initiatives will be brought to the FDP Check and Challenge Group for comments.

The head of communications and engagement presented a selection of comments and feedback received to date. The head of communications and engagement reported that the general feedback was the quality of the documents which is a testament to the FDP Programme working with the PPECAP panel for a number of months to get a good understanding of how to pitch the information at the correct level. Feedback from the PPECAP has been incorporated into the content.

The FDP head of communications shared the drafted easy-to-read contents with the FDP Check and Challenge members. The information will be circulated to FDP Check and Challenge members with an ask to send any comments to the FDP Programme team by Friday 24 May.

The group asked for more detail on the co-production workshop for the PET easy-to-read guidance. The FDP head of communications and engagement advised that the workshop will focus on 2 outputs; content that will be published and a guide with imagery. The workshop includes attendance from the same group that worked on the Federated Data Platform and Associated Services (FDP-AS) easy-to-read guidance and the process of the workshop is to go through the proposed content line by line and unpick each in intricate detail. The process enables good insight into the messages intending to be sent and what is received.

The group queried the language used in the proposed content and asked if the wording could be ‘there are sets of tools which help protect data depending upon how much data needs to be harmonised and anonymised’. The FDP head of communications and engagement advised that within the PET tool there are a number of treatments that can be applied for different purposes. The FDP head of communications and engagement outlined that wording on the tools and treatments is not currently included in the proposed narrative, but the PPECAP were provided with an overview on PET which included examples of a range of tools and types of things they do. This element needs a lot of distilling to be publicly consumable, but it will talk to the points raised and the intention is to do develop a supporting diagram for this.

Action: Check and Challenge members to send any comments on the PET easy-to-read guide content to the FDP Programme team by Friday 24 May.

Action: FDP Programme team to take on feedback for PET easy to read guidance, including consideration of tool and treatment terminology.

NHS FDP public engagement proposal

The FDP head of communications and engagement presented the FDP public engagement proposal to Check and Challenge members for review and feedback.

The head of communications and engagement provided an overview of the proposal. The FDP head of communication and engagement advised that the FDP public engagement proposal has also incorporated feedback from the public engagement portal, to help identify themes to cover in engagement events, which included key themes of interest in privacy and confidentiality, patient choice and opt-out, benefits, and security.

The FDP head of communication and engagement outlined that the approach to FDP public engagement will focus on collaborating closely with regions to enable a whole picture on how insight comes together but also to allow regional views to reflect a more localised footprint. Engagement with be deliberative and the FDP Programme will collaborate with local teams in terms of how this will be developed. Engagement will be a mix of face-to-face sessions and virtual and will be nationally representative and will include people who have registered via the Public Engagement Portal.

The FDP head of communication and engagement advised that procurement for this piece of work is due to take place in June 2024. Delivery is currently planned to begin in August 2024 and run through to October, with insights and reporting provided in November 2024. During delivery, ongoing views and reports will be developed on a monthly basis.

The FDP head of communication and engagement asked the group for feedback on overall approach, themes for exploration, seldom heard groups, and thoughts on who to involve in the events.

The group queried what mechanism had been identified for communication with seldom heard groups and advised that previous research indicates that ‘who’ you have delivering the message is as important as the message itself. The group also advised instances where local trusted clinicians were the best group for reaching those groups and people and emphasised the importance of using trusted voices in communities.

The group discussed the possibility of local GPs supporting the delivery of messages and fed back that members had been informed that GPs are being asked questions about the FDP from local patients. The challenge was posed on how could the FDP Programme educate GPs and clinicians individually so that they can share communication in a succinct way and the potential for collaboration with charities on supporting large-scale communications.

Members of the group asked if there is a particular strategy developed to target GPs and offered support in engaging with key organisations. The FDP head of communication and engagement advised that, to date, GPs have been involved in discussions but have not been directly targeted as the national instance of FDP doesn’t include a direct feed of GP data. The FDP head of communication and engagement welcomed further discussions on GP engagement.

Members reminded the group that GPs are contract holders and will be the decision makers on what information is displayed or shared in waiting rooms. Members queried whether there will be appetite from GPs to support sharing of information on the FDP.

The group asked if the engagement sessions would include discussions on Palantir’s role in the programme as members of the group felt that this may be a concern in the public. It was advised that elements of this have been explored as part of the Large-Scale Public Engagement Programme with a key theme being on how the NHS works with a number of external organisations, of which the FDP Programme provided a case study to facilitate discussion. The FDP head of communications advised that engagement discussions won’t have a theme to explore Palantir directly, but Palantir representatives will attend and be visible as part of this approach.

Members of the group queried the approach to including Palantir within public engagement discussions and suggested it may constrain the ability to have discussions and voice concerns regarding the supplier. The FDP head of communication and engagement agreed to discuss this further with the FDP Programme team and explore the best approach to addressing this feedback.

Action: Check and Challenge members to review the FDP public engagement proposal and provide feedback to the FDP Programme team.

Action: FDP head of communication and engagement to link in with identified members to explore GP engagement opportunities further.

Action: FDP Programme team to consider supplier presence in public engagement activities.

Any other business and close

The chair asked the group for any further business.

Members of the group provided feedback on the minutes of the FDP Check and Challenge Group meeting and reported that the tone of the minutes didn’t fully capture the challenge and critical feedback that has continued to be inputted into key aspects of the programme. The group agreed it is important to reflect where positive and robust discussions have taken place, but this needs to be balanced.

Action: FDP Programme team to review feedback on meeting minutes. 

The next meeting is due to take place on Friday 14 June.

The chair thanked all for their attendance and closed the meeting.