Organisational attendees

• 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
• Healthwatch
• Royal College of Surgeons
• NHS Confed
• NHS England
• National Voices
• Nottingham University Hospitals Trust
• Association of Medical Research Charities

Apologies received

• UNISON
• 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.

Minutes and actions from previous meeting

The Check and Challenge members approved the minutes and actions from the last meetings on 18^th October 2024.  

A member of the group advised they would send minor drafting points on the minutes to the FDP Programme Team.

The chair took the group through the open actions.

CAC-A68: The FDP Programme Team confirmed that they had received feedback on the FDP Evaluation approach and questions. The FDP Programme Delivery Director provided an overview of how the feedback has been considered and incorporated into the model, and advised that this evaluation approach would be brought back on a regular basis for the group to receive regular updates.

NHS Federated Data Platform Programme update

The FDP Programme Delivery Director provided an update on the FDP Programme.

There are now 90 Trusts and 27 Systems that have signed up to the FDP, either via an Memorandum of Understanding or a Letter of Intent. The FDP programme team are working with organisations and systems on their delivery plans. The Programme’s first Trust post transition of pilot sites has now gone live with the FDP, with the programme on track to get to 71 organisations by the end of year. Systems are currently working with the FDP programme team on products and use case developments.

A member of the group asked whether there is any particular focus on Surgical Hubs, noting the cross over of objectives on productivity improvements. The FDP Programme Delivery Director and Director advised that although not a specific focus, the is recognition that there is further work in the FDP to do in regards to Surgical hubs and mutual aid. There are sites at the moment who have opted to use the FDP in their elective hubs, so discussions and scoping has commenced on how this is widened.

A member of the group asked at what point does the FDP become mandatory and asked for clarification on the figure used for the objective of the number of Organisations to adopt the FDP (240). The FDP Programme Delivery Director and Director advised that although the FDP is not mandated, NHSE will encourage organisations to implement the FDP, particularly in areas of elective challenges, which is due to be included in the NHS England Annual Planning Guidance. The 240 organisations is Acute Trusts, ICBs, and a proportion of Mental Health and Community Trusts.

A member of the group advised that the trick to unlocking uptake of the FDP is the Population Health Management work.

The FDP Communications and Engagement Lead provided an update on the FDP Programme Communication and Engagement activities.

The FDP page on the NHS England website has undergone an update, due to go live on 18 November, and includes uptake and benefits statistics as well as a newly produced FDP animation video.

The FDP communications and engagement team are currently looking into how the programme makes best use of ambassadors of the programme to support promotion and engagement both internally and externally. The group were asked to reach out to the FDP Programme Team if they would like to be a programme ambassador.

The team are also developing a social media strategy which looks at how the programme utilises key platforms, such as LinkedIn.

The FDP Head of Communications and Engagement presented a high level plan for regional engagement events. This would include working with a select number of people from this group, as well as representatives from Trusts and Systems, to help develop regional stakeholder engagement plans, including key areas of interest, and supporting regions in being able to identify areas of concern of interest that would require further engagement with the public before continuing with FDP development. The group were asked to reach out to the FDP Programme Team if they would like to be part of this Regional Engagement Steering Group.

A member of the group asked for clarification as to whether the engagement plan was aimed at NHS colleagues or patients. The FDP Head of Communications and Engagement clarified that this is aimed at engagement for the public but developed in partnership with Trusts and Systems to enable regional focussed engagement based on robust insights and lessons learned.

A member of the group commented that communication materials may need to be wider than digital resources and include physical resources to enable as much accessibility to information as possible. The FDP Head of Communications and Engagement advised that there are plans in place to produce comprehensive packs of branded materials to hand over to Trusts and ICBs which will be both physical and digital materials. The Group Chair asked whether this would includes options for resources to be available in other languages. The FDP Head of Communications and Engagement agreed to take this as an action to explore further.

Members of the group volunteered to be part of the Regional Engagement Steering Group.

A member of the group advised that they were already involved in a public engagement group in another digital programme, of which the group had a good level of expertise on public engagement and may be a good opportunity for sharing lessons learned. The member of the group also advised on the need of ensuring appropriate alignment and integration with existing engagement groups, particular on Population Health Management to ensure messages are consistent and effort is not duplicated. The member of the group also advised on the importance of enable points of service contact the people come into contact most having the necessary communication resources and details to support promotion, engagement, and education. This included the need to engage with Primary Care Leads at a national level to allow mutual support for communications. The FDP Head of Communications and Engagement agreed to pick up an offline discussion with the member of the group.

A member of the group asked what the plan is for wider engagement to the general public, as opposed to just those who are in healthcare settings. The FDP Head of Communication and Engagement advised that the team are scoping the potential, with NHSE colleagues, for what a wider public engagement plan could look like across NHSE data.

A member of the group asked if the public facing communications campaign about uses of NHS data is something we should all be supporting in spending review evidence. The FDP Programme Director advised that NHSE colleagues and DHSC colleagues are exploring how deliberations can transition from deliberative exercise to forward facing communication campaigns in an attempt to ‘humanise’ communications. The FDP Programme Director confirmed that support in generating evidence to highlight the need for public facing communications would be positive and would help build cases in the context of funding prioritisation.

A member of the group suggested talking to the Engineering & Physical Sciences Research Council as they are working towards increasing digital literacy in public and healthcare workers.

Action: Check and Challenge members to reach out to the FDP Programme Team if they would like to be part of the Regional Engagement Steering Group.

Action: FDP Head of Communication and Engagement to link in with Check and Challenge members who volunteered to be part of the Regional Engagement Steering Group during the meeting.

Action: FDP Head of Communication and Engagement to link in with a member of the Check and Challenge group on public and patient engagement lessons learned and the opportunity to integrate with existing forums.

Action: FDP Head of Communication and Engagement to scope out the potential for FDP communication materials to be available in other languages.

Action: Check and Challenge members to reach out to the FDP Programme Team if they would like to be a formal FDP Ambassador.

Population health management use case

The FDP Population Health Management Use case Lead and Product Owner, along with colleagues from the FDP Population Health Management Use Case Development Team provided an overview of the work to date and shared a demonstration of early indications on how the Use Case could function as a proof of concept.

Population Health Management has been a topic discovered and developed over a number of years, with work taking place in other programmes before the FDP programme was initiated. This includes a number of Population Health Management forums being in place with a range of stakeholder representation. The FDP Population Health Management Use Case developments provides an opportunity to streamline and bring through into the FDP programme in a consisted way.

The Population Health Managed Use Case vision has been developed, as well as the establishment of the Population Health Management Use Case Forum which is an advisory group with a range of representation from Trusts, Systems, Clinicians, Analysts, Information Governance, Data Leads, and Population Health Management subject matter experts.

Currently, the Population Use Case development team are developing options and scoping potential products and capabilities as part of the active discovery and engagement phase. There is a broader FDP systems offer where engagement is taking place with Systems which includes, but is not limited to, scoping Population Health Management opportunities.

It is important that the development of this use case builds on existing work, lessons learned, and systems to identify how the FDP Population Health Management Use Case can meet the needs of systems at scale whilst building on best practice.

Over time the team will be developing and building six modules for the FDP Population Health Management Use Case. These modules are classed as either; strategic commissioning, neighbourhood health models, or demonstrating impact and value. The development of the FDP Population Health Management Use Case follows the same flow as the FDPs product development process in that the Use Case will be built with a selected number of incubator systems to help test and shape the use case, utilising subject matter experts for input and feedback, before undergoing relevant testing and scale ability assessment before being piloted. The plan is for there to be one incubator system in each region.

The team provided a demonstration of a Preventative and Early Diagnosis proof of concept tool. Currently there are a number of national early prevention and diagnosis programmes such as vaccination programmes, screening programmes, and health checks including elements such as the national diabetes audit. At the moment, each of these programmes are slightly silo in understand patient uptake. The FDP Prevention and Early Diagnosis tool aims to enable a person centred view whereby you can see not only which programmes individuals have had but also which they are eligible for. This enables the ability to identify cohorts of individuals who may not have taken up multiple programmes, and support in a targeted approach to encouraging uptake on programmes in a packaged approach.

The proof of concept demonstrated uses synthetic data and was built in four main stages; Home Page to understand and signpost what each page of the app is, Programme Uptake to understand uptake and those yet to have programmes across population segments, Set Objectives to prioritise patient groups, and Cohort Opportunities to investigate the high priority cohorts and estimate operational saving by delivery interventions together and create actions from insights.

A member of the group asked whether there are unintended restrictions by focussing on those cohorts who fall into the category of receiving packages of programmes and therefore risk not offering to cohorts where they may only need 1 programme intervention. The member of the group advised that the team need to consider public and patient engagement and perspective on potential biases that could be created through a ‘machine learning’ approach. The FDP Public Health Management Use Case Team advised that the tool aims at increasing accessibility of NHSE services for patients and the tool being demonstrated is a very early proof of concept, in which clustering algorithm is used, and this type of feedback is very helpful and will be taken back into the team.

A member of the group commented on the breadth of Population Health Management with the need of inclusion of areas such as housing and environment as an advantage of being able to identify cohorts pre-NHS contact. The member of the group advised that patient and public communications will be very important for this tool in describing how decisions are made and how the tool works. The member of the group commented on the need to further understand the connectivity with the FDP which is predominantly secondary care focussed. The FDP Population Health Management Use Case Team advised that the tool being demonstrated is an early proof of concept but the ambition will be for the inclusion of information such as housing and environmental.

A member of the group asked for further clarification on the approach for Information Governance. The FDP Head of IG advised that this is a very complex piece of work but provides opportunity to work alongside Population Health Management colleagues to ensure the data needed to be used for Population Health Management is done so lawfully, after which local organisations can be informed on how the FDP intends to lawfully process data and supported to ensure data continues to be processes lawfully. The FDP Programme are working with the NHSE Director of Privacy and Information Governance, and the NHSE Privacy, Transparency, and Trust Team to ensure any use of data on the platform is done lawfully and consistently. The FDP Head of IG offered to pick up this topic in an existing FDP Information Governance forum for future discussion.

A member of the group outlined their concern on the risk of a tool presenting information in a certain way which would influence interpretation and decision making, which would move away from the ‘human’ element in decision making, and referenced the impact that an increase in GP resource would have. The member of the group emphasised the importance of a tool to still have ‘human control’ and wrapped with policy. The FDP Programme Director agreed that the ‘human in the loop’ is the most crucial part and clarified that the FDP is an assisting tool and not a decision making tool, but recognised the need to ensure training, education, and engagement makes this very clear. The FDP Programme Director advised that increases in GP resource sits within the NHS Workforce Strategy as a separate element of work.

A member of the group asked, from an ICB perspective, what risk management approach should there be for future collective action on data sharing from a GP point of view, as ICBs may be concerned about this. The FDP Programme Director advised that if it is decided to bring GP data into the FDP instance then this will be under the local instance which is based on existing local data sharing agreements or addendums to existing local data sharing agreements between ICBs and their constituent GP Practices. The FDP Head of IG advised that any product that includes data must go through the FDP IG Framework, including the Data Governance Group which is attended by IG professionals from across the NHS, to ensure there is a lawful basis for the data. The member of the group asked for any further information in terms of socialising this information with ICBs who may be concerned. The FDP Head of IG advised that their approach is to engage with ICBs and provide access to IG subject matter expertise as the ethos of the programme has always been to share knowledge and upskill. This includes meeting with organisations to give clear narrative on the Information Governance Framework and approach put in place. The FDP Head of IG agreed on the importance of ensuring engagement is done at the earliest and most appropriate opportunity to ensure a futureproof approach.

A member of the group advised that the communication and messaging on this would need to be carefully considered. The member of the group asked how learning from the previously described FDP Regional Engagement Sessions could be brought into pilots or used at a local level. The FDP Population Health Management Use Case Team advised that engagement is iterative, but the team plan to build in regional engagement and recognise the importance of having a good level of representation and input from stakeholders as the topic of Population Health Management is wide.

Any other business (AOB) and close

The next meeting is due to take place on Friday 13^th December.

The Chair reminded members to sent any requests for agenda items to the FDP Programme Team.

The Chair advised that a Friday is the preferred day for the majority of members to attend this meeting. Meetings going forward will remain on a Friday.

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