Organisational attendees

• National Voices
• Office of the National Data Guardian
• 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
• NHS England
• Patients Association

Apologies received

• Healthwatch
• Association of Medical Research Charities
• Nottingham University Hospitals Trust
• UNISON
• Royal College of Surgeons

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.

Minutes and actions from previous meeting

The Check and Challenge members approved the minutes and actions from the last meetings on 17 July 2024.

The chair took the group through the open actions.

The chair advised that the Federated Data Platform (FDP) Programme team would provide an overview of the approach to integrated care system (ICS) engagement in this meeting, but a further presentation will be provided in a future meeting given the number of apologies received for this session.  

NHS Federated Data Platform Programme update

The FDP programme delivery director provided an update to the group.

The programme now has 73 sites confirmed to join the FDP via the signature of a memorandum of understanding. These sites are moving forward through the onboarding process and will be supported as they progress into delivery planning to ensure local needs are met. The programme continues to work with trusts and integrated care boards (ICBs) to develop a longer-term pipeline as the programme looks to future ambitions.

The programme continues to support sites to transition onto the FDP, of which 33 sites have now successfully transitioned. Final sites are currently being supported with an expectation that core sites will complete transition in August 2024, followed by incubator sites completing in September 2024. National products continue to transition to the FDP. This week the FDP went live with vaccination local site products which will enable the programme to onboard sites ready for the autumn booster campaign for Covid-19.

The programme team continue to work with local sites and systems to further develop and refine core products that are currently available to ensure functionality still aligns to local needs. In addition, the programme team are also working with local organisations on what local products and services need to go into our product pipeline, details of which the programme will look to share with this group in the next couple of months.

The FDP programme delivery director advised that members will have seen recent media outlet articles on the FDP letters sent to trusts and systems from Vin Diwakar and Emily Lawson. While implementation is not being mandated, all trusts and ICBS are being asked to provide plans for how they will maximise the benefits of the FDP for their patients within the next 2 years. Demand is high so the programme is asking trusts to sign up so that a schedule can be developed into the overall delivery timeline.

A member of the group advised that although helpful to receive an update and clarification, it is felt that there is a level of anxiety in trusts and systems and potential communications which indicate a ‘comply or explain’ approach. The member of the group described that careful consideration needs to be taken in the approach to ensuring the most effective way of take up, engagement, delivery, and transformation is achieved. The member of the group flagged concern on the potential to misstep and create anxiety within the system. The FDP programme delivery director thanked the member of the group for their comments and agreed to discuss further in an offline discussion in ways in which communication can be improved. The chair suggested that there may be benefit in increased transparency about the uptake trajectory which would help explain that this exercise has been a focus on demand planning and not a focus or concern on meeting trajectory targets. A member of the group added that organisations are also reference comments from the Secretary of State about the pace of adoptions, so there is a need in being able to align messaging and tone.

The FDP head of communications and engagement agreed to share the letter with members of the group.

The FDP programme delivery director outlined that the team continue to receive feedback from this group and play it into the programme.

The FDP head of communications and engagement provided an update on the FDP uptake and benefits report. A high-level view of the FDP uptake and benefits report was presented to the group which was an updated version of a report shared with the group in a previous meeting. The programme team anticipate that the report will be published at the end of August 2024.  The programme team are reaching out to trusts to ensure they are supported in understanding the figures and methodology of the report. The publication will be shared with this group once published. Previously the report was due to be updated monthly, but this has now changed to quarterly to align with existing report schedules.

The chair asked if there are any supporting materials to help explain the benefits and uptake information in terms of what it means in simple terms, and what it means using appropriate examples and case studies. The FDP head of communications and engagement advised that the web page will be much more detailed that the high-level version presented in this session, the full version will include definitions on data used, case studies to show what this means in ‘real terms’ as well as softer intelligence to help build context. Once the report is published, the programme team are very happy to receive feedback and are open to further developing and refining.

A member of the group asked if the programme is tracking any benefits around health inequalities in relation to use cases. The chair advised that generally across the NHS reporting on health inequalities often doesn’t feature because demographic data isn’t universally captured. The chair requested that, based on feedback from the programme, it may be useful to have a focussed discussion on health inequalities as an agenda item for this group and invite health inequality colleagues. The FDP head of communication and engagement agreed to link in with the FDP benefits lead and feedback to the group.

The FDP head of communication and engagement provided an update on communication and engagement activities in the programme. Over the last month the programme has published the FDP information governance framework and FDP product privacy notices. The programme has also been completing the next cycle of quarterly stakeholder engagement meetings with Royal Colleges and organsiations within this group, as a regular touch point to provide updates on the FDP and to take feedback and hear views, insights, questions, and concerns, and explore opportunities. The programme has also launched the Centre of Excellence and Solution Exchange content, publication of which is the first step of the Solution Exchange which will focus on providing a product catalogue to existing trusts and will be used as a vehicle to support local innovation. The FDP programme bulletin third edition is due to be published in September 2024.

The FDP information governance lead provided an update to the group on key information governance activities. Transition is completed for all products that were previously on the National Data Platform, with documentation for all going through and being approved by the Data Governance Group and further approvals in the NHS England Privacy Transformation and Trust Directorate, before being released to the system. A 2-day workshop has been held with the FDP Information Governance team and the NHS England Privacy Transformation and Trust Directorate to start exploring what ‘business as usual’ will look like moving forwards. In addition, the team are planning to develop a handbook to support the Information governance framework and templated documents and will develop a reference guide for anyone joining the programme to describe how information governance is implemented across the programme. The team are now looking to reviewing all of the data processing impact assessments approved in April 2024 of which the team have been meeting on a regular basis with the National Data Guardian, Information Commissioner’s Office who have provided feedback on how the templates can be improved. A system information governance group and external information governance group have also been supporting this piece of work and offering feedback and suggestions on improvements. Feedback will also be captured from trusts as the FDP head of information governance has been meeting with trusts who are interested in joining the programme to discuss information governance, of which feedback is being captured and fed into this review process. The FDP information governance framework and overarching FDP data protection impact assessment has been published online and the team are in the process of publishing privacy notices and data protection impact assessments for all products.

The chair asked if the FDP Programme team could provide a brief update on the engagement with ICSs.

The FDP head of communication and engagement advised that several one-to-one sessions are taking place with ICSs, which have been led by the FDP deputy director of demand and delivery. In addition, a session is being coordinated for December 2024 which will be part of an NHS England Senior Leads Forum in which the FDP will be discussed, and opportunities further explored. The FDP deputy director of demand and delivery advised that a multifaceted approach is currently being taken with system engagement. The team have been engaging with systems and discussions have been taking place with chief clinical information officers to understand their needs and to test how the FDP can support their organisations and how best to operationalise the FDP for a system. These conversations take on a number of perspectives including data and interoperability, data quality, reporting, and information governance. These discussions continue to take place to enable the programme to gain insight into how an FDP system offer can benefit organisations. An ICB forum is also being established to bring these discussions into a central forum and allows the programme team to test thinking and receive feedback. It’s important to note that the FDP system offer will be a collaborative and co-creative iterative process. In addition, the programme has held ‘hackathons’ with 2 ICBs to focus on key elements such as ingesting data and use cases of interest, such as population health management.

The chair asked the FDP deputy director of demand and delivery how those discussions have been received by ICBs. The FDP deputy director of demand and delivery advised that it is a variable landscape and will depend on what ICBs have in place locally in regard to the uptake of FDP in trusts as well as digital maturity.

The group queried if more could be done to communicate on lessons learnt as a mechanism to build trust and understanding. The FDP head of communications and engagement advised that discussions on elements that could be improved, and open and honest discussions are pulled out through the programme’s engagement forums which is then fed back into the programme as learning. The FDP deputy director of demand and delivery advised that the forums in place have historically been for trusts who are currently part of the FDP but are being expanded to organisations who are interested in the FDP so they can join and listen to convos and ask questions from other trust representatives to share learning and experiences. The FDP head of communication and engagement agreed to take an action on exploring further ways in which this could be communicated, including the use of case studies and blogs to demonstrate lessons learnt and how improvements have benefitted the programme. A member of the group advised that in speaking with organisations they have fed back that the opportunity for shared learning spaces has been valuable.

A member of the group asked for an update on the role of KPMG in supporting the system engagement for FDP. The FDP deputy director of demand and delivery advised that KPMG’s support has including enabling the programme to continue to have meaningful conversations with organisations and enable the programme to engage at scale. The FDP head of communications and engagement reassured the group that in terms of strategic direction the programme is an NHS England led programme and so NHS England set the strategic direction but will have support in place to deliver.

A member of the group queried if it would be helpful for the programme to look at the ICB digital maturity assessments. The member of the group advised that there are variable degrees of understanding across ICBs and ‘resistance’ with the goals of the FDP might be symptom of their digital maturity. The member of group emphasised the importance of ensuring the tone of FDP delivery and engagement model is a partnered construct as opposed to a national delivery approach. The FDP deputy director of demand and delivery supported this and added there is also a need to ensure that each discussion which demonstrates different needs is brought centrally and clear expectations are set on what the FDP can do at the beginning of this journey and how it will develop in partnership with trusts and systems. The chair added it would be helpful to show this collaboration in communication materials.

Action: The FDP letter sent from Vin Diwakar and Emily Lawson on 26 July to be shared with members.

Action: FDP Programme team to arrange offline discussion with check and challenge members to discuss system engagement and communications.

Action: The FDP head of communication and engagement to link in with the FDP benefits lead regarding health inequality tracking and feedback to the group.

Action: The FDP head of communication and engagement to explore further ways in which lessons learnt could be communicated, including the use of case studies and blogs to demonstrate lessons learnt and how improvements have benefitted the programme.

The Patients Association – Foundry Platform

A representative from the Patients Association provided an overview on the work they have been doing on the Foundry Platform.

Over the last few months, the Patients Association have been working with Palantir to get patient insight on their Foundry Software. The Patients Association brought together 10 patients from a diverse range of background and held 2 focus group discussions. The Patients Association worked with Palantir to develop a range of information they felt patients want to know about Foundry and this was used to facilitate the first focus group discussion, with then refinement and additions made the document on the back of the first focus group discussion, ready for the second focus group discussion. Where the group discussed the FDP, the team took information from existing publications.

In regard to outputs of the project, the Patients Association aim to provide 3 key outcomes:

1. Development of a guide on all issues patients raised and the response provided.
2. Development of a summary document to sit alongside that covers all issues raised in detail.
3. Producing a video which gives a top line summary on what the focus groups discussed and what patients felt was most important to them.

In terms of the final report, this provides an overview on what Foundry is and what it does. The latter part of the report then addresses the issues patients raised such as accessibility, security, administration, and examples of where it currently works and further opportunities.

There were some issues patients raised couldn’t be include as a guide to foundry, but it is important to ensure they are recognised, and so the team will be developing blogs on some of the wider issues discussed.

In regard to timings, the team are expecting the video and documentation to be published in September 2024, but this is indicative. The Patients Association representative agreed to share the publications once published.  

The Patients Association representative thanked their colleagues and the FDP head of communications and engagement for their support.

A member of the group asked whether the topic of controversy and concerns regarding Palantir came up in discussions. The Patients Association representative advised that these topics were not raised during the recruitment of patients or during the focus group discussions.

A member of the group asked whether information had been given to the group about Palantir and their activities beyond the FDP in advance of the focus group discussions. The Patients Association representative advised that the team did provide a background document with information about Palantir, other organisations they have worked with domestically as well as internationally, and gave information on presence in the UK.

The Patients Association representative advised that Palantir reported a positive experience of the project and were proactive in putting information together to support questions from patients that weren’t anticipated.

Action: The Patients Association to share a link to the publication of the Foundry Software Project once published.  

Any other business and close

A member of the group asked if there is a public statement on whether the recent CrowdStrike incident affected the FDP and if there is a risk this type of incident would therefore cause significant impact on the NHS. The FDP head of communication and engagement agreed to provide a statement from the programme on this.

The next meeting is due to take place on Friday 20 September 2024.

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

Action: The FDP Programme to provide a statement on whether the recent CrowdStrike incident affected the FDP.