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
• Nottingham University Hospitals Trust
• UNISON

Apologies received

• NHS England
• Patients Association

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.

Member of the group asked if the recording of the meeting could be shared.

Minutes and actions from previous meeting

The Check and Challenge members approved the minutes and actions from the last meeting on 16 June 2024.

Members of the group asked if there was still intention to present the Federated Data Platform (FDP) uptake and benefits dashboard and present on FDP ICS engagement, given these topics had to be moved from the June meeting in alignment with pre-election rules. The chair confirmed that the dashboard was being presented at this meeting, and the FDP Programme team confirmed that the FDP ICS engagement agenda item will form part of the August Check and Challenge meeting.

The chair took the members through the FDP Check and Challenge action log. The Chair advised that were currently no outstanding actions, with actions either completed or in progress.

Large-scale public engagement update

The large-scale public engagement representative provided an overview of the research results published in May 2024 and an update on the Large-Scale Public Engagement Programme. As a note, the first cohort of the large-scale public engagement concluded on 19 July 2024, and the large-scale public engagement representative advised that the findings from that cohort can be brought back to the September 2024 FDP Check and Challenge meeting.

A programme of research was undertaken to further develop insight into public and NHS staff audiences, and how these audiences segment. This was done in order to meet NHS England’s duty of transparency, understand how to support people in making informed decisions around data use, and support policy and programme development.

The Large-Scale Public Engagement team ran a comprehensive programme of research with both the public and staff, and the research used both qualitative and quantitative research methods. The large-scale public engagement representative provided an overview of the results from the public research.

Key findings included:

• When asking the public on broad trust in institutions, organisations, and then trust in organisations with patient data, the NHS was one of the most trusted institutions. The level of trust decreased slightly for technology companies who develop apps and services.
• The vast majority of the public worry their patient data might be compromised by cyber attacks, with slightly fewer concerned about human error or the NHS selling their patient data.
• There is high overall awareness of all the different ways the NHS uses patient data, but those definitely knowing it is used for individual care outstrips other uses.
• Comfort with the NHS using patient data is also high across the different purposes, with the highest level of comfort for individual care.

The research split the public into 6 segments which ranged from ‘confident data enthusiasts’ to ‘NHS and privacy sceptics’. When describing the demographic profiles, findings included:

• Those in a ‘positive’ segment tended to be younger, high levels of degree education, and higher socio-economic status with difference in caring responsibilities and use of health services.
• The segment of ‘familiar and unsure’ tended to have a higher number of people with disabilities, low levels of degree education, higher levels of white respondents, and reassured by building on the high trust in the NHS, rather than focus on data or technology.
• The segment of ‘disengaged and data protective’ tended to have; lower levels of degree education, higher levels of ethnic minority group respondents, higher levels of respondents who live in urban areas, and low use of online health services.
• The segment of ‘NHS and privacy sceptics’ tended to have lower levels of degree education, lower consumption of news media, low use of all health services, and low use of online health services.

The large-scale public engagement representative shared the link to the full research findings with the Check and Challenge members and advised that the research has been fundamental to designing the Large-Scale Public Engagement Programme.

The large-scale public engagement ran its core deliberations with 120 people, in which the team used the segmentation from the research to influence the recruitment for the core deliberation group. The team reached out to individuals to take part with the deliberations, with a particular reach out into disengaged and health data protective segments. The team were conscious that not everyone could join the deliberations, so deliberations ran through June and into early July, including inclusive engagement. Following this, the team then ran a number of deliberation surveys with a representative sample of two thousand individuals of which the survey closed on 19 July and the team are now due to validate and analyse these findings.

The first cohort focussed on the overall ‘problem statement’ of ‘what does the health and care system need to do for you to feel confident in how your data is being used’ and touched on topics such as governance and data access committees, the value of data for research, and the data pact. The discussion was also supported with a range of case studies included case studies from the NHS England Federated Data Platform.

In terms of next steps, the Large-Scale Public Engagement Programme team are aiming to publish a report from the first cohort in late August 2024.

The group advised that it would be interesting to be able to see the demographic breakdown for respondents, both for the research finding and engagement, to ensure they are reaching groups such as those from minority ethnic backgrounds. The large-scale public engagement representative agreed to share the breakdown figures with the group and advised that, for the research, the team ensured that it was a representative sample and when conducting the quantitative research the team had a two thousand person sample and then a boost for offline individuals via interviews conducted over the phone. The sample also had a boost with seldom heard audiences, so the team deliberately targeted some of those groups that might not just respond to an online survey. For the Large-Scale Public Engagement Programme, there is a high importance of inclusivity and so there is a really strict criteria to ensure a representative sample was selected. This also included focussed recruitment and inclusive engagement.

The chair advised that, when producing sample information, it might be helpful to further analyse the boost samples as sometimes this can still produce similar characteristics in other areas such as socioeconomic and education status.

The group asked whether the team had any data on engagement with those who may have a particular health condition or disease as this could impact on segmentation. The large-scale public engagement representative advised that for the research the team didn’t specifically ask about rare conditions or diseases but ensured that the research captured a range of people who use health services and have care responsibilities. For the Large-Scale Public Engagement Programme, the deliberations included understanding those who had long-term health conditions and disabilities. The large-scale public engagement representative agreed to share the inclusivity engagement figures with the FDP Check and Challenge Group.

The group queried whether there are any indications on how the findings might shape the future of the project. The large-scale public engagement representative advised that the research continues to underpin the planning for the engagement programme and continues to produce areas of interest such as the movement of people between segments. The results from the findings also support in identifying potential changes to policies and programmes to reassure individuals that their concerns and input are reflected, as well as providing opportunity for further engagement to provide more clarity and help challenge misconceptions. This includes close working with policy and communication teams to ensure that change and response is possible.

The group agreed that this is a fantastic piece of work with many members taking a keen interest to use the findings to support change.

The group queried whether there is anything anecdotal that could be shared on the information received so far on the data pact and the value of data. The large-scale public engagement representative gave indicative thoughts but did encourage the group to wait for the full findings to be released. Indicative thoughts included the response to the data pact being quite mixed in the concept being supported but more development required on the document itself, and the value of data discussion had a lot of support for a lot of the work happening in this space and are reassured by the governance.

The group queried whether the deliberation participants understood that the Federated Data Platform and the Secure Data Environment are 2 different projects which are being run for different purposes. The large-scale public engagement representative reported that findings and deliberations thus far have shown that the public don’t distinguish between, or understand, all the different platforms. However, the public were reassured by the concept of secure data environments. It’s important to note that although the titles of Secure Data Environment and Federated Data Platform were used, the discussions were around data for research and how hospital data can be linked. The large-scale public engagement representation reported that the discussions were very interesting with the overwhelming piece of feedback being how complicated this topic are is and trying to understand why some of it isn’t already happening. the large-scale public engagement representative advised that the public don’t tend to use the acronyms/platform specific titles but care more about the fundamental principles that underpin.

The group queried the impact on communication in the future, with particular note on the differences between platforms and programmes and the need to be clear on where there are key differences such as opt-out applicability. The FDP head of communication and engagement advised that this element is where the FDP public engagement approach will get into this level of detail and understand how the FDP Programme defines, discusses, and communicate in a way that is clear and accessible to support people to make informed decisions.

The FDP head of communications and engagement also advised that the FDP Programme have asked an agency to do an analysis around the segments from the large-scale public engagement so that the FDP Programme builds on the learning.

The large-scale public engagement representative reported to the group that they have been speaking to their supplier about the quantitative research and identifying key lines enquiry such as how does the segment an individual falls into impact their response.  

The group queried whether, on publication, if there is going to be clear caveats and the areas of research is doesn’t cover. Large-scale public engagement representative agreed to take this away to find out.

The chair thanked the large-scale public engagement representative for presenting to the group

Action: Outcome of cohort 1 of the large-scale public engagement to be brough to the September FDP Check and Challenge meeting.

Action: Breakdown of large-scale public engagement sample demographics to be shared with the FDP Check and Challenge members.

Action: large-scale public engagement inclusivity engagement figures to be shared with FDP Check and Challenge members.

Action: Confirm if the large-scale public engagement publication of research includes key caveats and outlines the areas of research it does not cover.

NHS Federated Data Platform Programme update

The FDP assistant director of the programme management office (PMO) provided an overview of key updates to the programme.

The programme is currently in transition phase with trusts transitioning onto the NHS FDP, with 24 trusts now live on the NHS FDP with further sites planned over the coming weeks. In addition, 12 brand new sites have now signed up to the FDP, with further sites planned to sign up over the coming weeks.

The programme has continued with the national product transition, with key products transitioning over to the FDP such as the Performance oversight dashboard. The FDP Programme delivery director advised that privacy notices are being published as products go live.

The programme continues towards the trajectory to 71 sites adopting FDP with a strong demand pipeline in place, and trusts starting to complete onboarding activities.

There are a number of key activities taking place, such as the development of the FDP Solution Exchange and product development whereby the programme is starting to develop and incubate new products, refine existing products that are available on the FDP, and develop an approach to support local sites to develop products which can be scaled up to support organisations across the NHS.

The FDP Programme have soft launched a Centre of Excellence but is a system to ensure that all organisations have the resources, training, and materials required to adopt the FDP and to ensure organisations can get the most out of the FDP.

The FDP Programme are due to hold an Analyst Day event in August in which a large group of analyst from across the NHS will come together to see how the FDP works and to also get hands on experience to ensure they are able to get the most out of the FDP.

The chair queried that with 24 trusts transition and 12 brand new sites signed up, are these figures connected to the target of 46 sites by the end of August 2024. The FDP assistant director of PMO confirmed that the figures are connected, and the target is to transfer all sites that were a pilot site onto the FDP by the end of August 2024, along with the transfer of national products into the FDP. Over the coming months, with the addition of new sites through the programme’s demand pipeline, this will bring the figure to 71 which is the programme’s ‘golden metric’. The FDP assistant director of PMO confirmed that the programme is confident in the ability to achieve the target.  

A member of the group advised that they had had some discussion with a number of organisations who are transitioning onto the FDP, and they have provided very positive feedback on the team, the NHS, and the Palantir team.

Product development

The FDP deputy director for product development provided an overview on how product development is being developed. This included draft detail on the product development lifecycle, product development roadmap for 2024-25, key local products in development, and a national view of incubated and piloting areas.

The chair invited the group to ask any questions.

The group queried if the FDP product development aligns with other NHS initiatives on productivity. The FDP Programme senior responsible officer (SRO) confirmed that the FDP Programme and products align the NHS productivity plan.  

The group asked if there are any plans to have a product for mental health trusts. The FDP deputy director of product development advised that the programme is receiving interest in this area and the FDP Programme Product team is in the process of scoping this area, along with development of ‘proofs of concept’ in areas such as mental health discharge support.

The group asked whether user involvement in product development is in relation to users of the data and technology or patient involvement. The FDP deputy director of product development advised that the term ‘user involvement’ is currently in relation to those who will be using the data and technology but agreed to scope the opportunity to bring patient patients into the product development journey, particularly noting the chair’s example of previous technological initiatives which directly impact on patient experience such as text reminder systems.

A member of the group asked to hear from the FDP Programme regarding reflections on the interaction and interplay between different pilots and products that are now being thought of and tested. This includes the opportunity for learning from moving into a population health management space which could provide a framework and interaction with the other products. The FDP Programme SRO advised that there is development happening on how the programme engages with other trusts and ICSs which the programme can update on at a future meeting.

A member of the group asked if there are any solutions being developed which focusses on reduction of data entry administrative burden. The FDP Programme SRO advised that the programme is in discussions with a number of organisations on more medically orientated foundation models. The advantage of having the FDP is the ability to be model agnostic which could enable the selection of large language model that are tailored to use cases. There are also technological advances in transcribing that the FDP Programme team are sighted on and will explore the opportunity to implement onto the FDP.  

Uptake and benefits-public information

The FDP head of communication and engagement, and the FDP head of benefits presented the proposed approach to developing a public-facing FDP uptake and benefits dashboard.

The FDP head of benefits provided a brief overview and background to benefits in the FDP Programme. The FDP Programme is committed to capturing the outputs and the outcomes of the FDP and the products on the platform. The programme is developing an approach to ensure monitoring of benefits/disbenefits and unintended benefits/disbenefits is robust. This enables the programme to assess level of achievement, and value for money return, as well as provide opportunity to identify areas of improvement.

The FDP Programme does collect benefits information, but it is important to note that the programme is mindful of not adding additional administrative burned to a trust when collecting this. The benefits information being presented today come directly from the products as an aggregated level from trusts. In addition, the programme pro-actively scope and develop case studies which give more granular examples of benefits achieved through the FDP.

The purpose of the Uptake and benefits public dashboard is to shift from reactive to proactive sharing of core metrics, build trust through transparency, reduce burden, and support demand generation.

The FDP head of communications and engagement provided an overview of the proposed approach and content of the Uptake and benefits dashboard. The dashboard will present a monthly snapshot of information about; the update of the FDP across NHS hospital trusts and integrated care boards (ICBs), the update of the nationally commissioned local products by trusts, and the benefits being realised through the use of the FDP nationally commissioned local products.

The FDP head of communications and engagement took the group through a step-by-step guide on how the dashboard will look and how information will be reported.

The FDP head of communications asked the group for any feedback or questions.

The group queried how the programme will make sure that people are being directed to the content. The FDP head of communication and engagement advised that tools such as the FDP bulletin will support reach as well as utilising social channels, both of which the team will be ensuring links to case studies and further information are provided in a layered approach to communications.

Action: FDP Programme team to provide reflections on the interaction and interplay between different pilots and products that are now being thought of and tested in relation to wider products and frameworks across the NHS (ie PHM/mental health).

Action: Circulate the FDP uptake and benefits dashboard proposal to Check and Challenge members.

Any other business and close 

The chair acknowledged the meeting overran and the agenda item on FDP Solution Exchange and Check and Challenge survey results were not presented. The chair asked for the FDP Check and Challenge survey results to be added to the beginning of the agenda for the next meeting. 

The chair also advised that they will be asking the group for someone to cover as chair for the 19 September Check and Challenge meeting.

The chair advised that the FDP Programme team will review the day that this meeting takes place and explore the opportunity to change the day from November 2024.

Action: Check and Challenge survey results to be added to the beginning of the agenda for the September Check and Challenge Group. 

The next meeting is due to take place on Friday 16 August.

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