Organisational attendees

Understanding Patient Data
Information Commissioner’s Office
Department of Health and Social Care
Royal College of General Practitioners
Association of Medical Research Charities
NHS Confederation
NHS England
Patients Association
British Medical Association
National Voices
Office of the National Data Guardian
UNISON

Apologies received

NHS Frimley Integrated Care Board
Academy of Medical Royal Colleges
Healthwatch
Royal College of Surgeons
Nottingham University Hospitals Trust

Open actions

Meeting notes

Welcome and introductions

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

Introductions of presenters took place, and no conflicts/declarations of interests raised.

Minutes and actions from previous meeting

The group approved the March 2025 minutes.

The Chair took the group through the open actions.

The Federated Data Platform (FDP) Senior Responsible Officer (SRO) provided updates against key actions.

• 10 Year Plan: The FDP SRO advised that the team are going through several checks and departmental deep dives with ministers to review the plan. There is a view that the use of the FDP should be maximised. The Chair asked when the 10 Year Plan would be published. The FDP SRO advised it is anticipated to be June 2025. A member of the group asked if there would be further opportunity for stakeholders to review and provide input into the plan. The FDP SRO advised that following the deep dive process there will be another stage of stakeholder engagement.
• National Data Library: The FDP SRO advised that initial discussions have commenced, with recent announcements on Health Data Research Service being circulated. The Welcome Trust have confirmed committed funding with a further discussion underway on ringfencing to create a multiyear view on what can be used to fund dedicated data assets for research. Data will be retained in the NHS and retained in the NHS infrastructure.
• Data Use and Access Bill: The Department of Health and Social Care (DHSC) representative provided an update to the group. The team are currently awaiting Royal Ascent by the end of May 2025. No foreseen implications for FDP. In line with DHSC objectives, this closes the circle on information standards with the ability to apply mandatory information standards that builds on the Heath and Care Act. Following relevant approvals of regulations and mandatory information standards, these will be introduced via a phased approach, likely in Autumn 2025.

NHS Federated Data Platform Programme update

The Director of Data Management and Transformation, NHS England, provided an update of the programme to the group.

The FDP Programme surpassed the end of year target, with a total of 73 trusts (72 acutes) live with at least 1 product and realising benefits. As of 22 April 2025, a total of 110 acute trusts have formally signed up to implement the FDP via a memorandum of understanding and the relevant information governance (IG) documentation with ongoing support provided including the use of the Centre of Excellence. Work is ongoing to make more products ‘generally available’ such as Cancer 360, Shared Patient Tracking List, and System Coordination Centre products.

The programme has set their 2025/2026 objectives including 85% of acute trusts and 50% of integrated care boards being live and realising benefits with at least 1 FDP product, and the expansion of the FDP into mental health and community organisations. The programme will also be focusing on providing retrofits of products to existing FDP organisations, with new products or product enhancements being made more generally available. In terms of the FDP Solution Exchange there will also be a focus on developing a commercial strategy for the FDP Solution Exchange and 3^rd party product availability.

As the programme moves into post March 2026, the programme will be focusing on the further building of capabilities such as automated reporting, reducing the burden on the frontline for data collections, connection data architecture and integration of operational data, and seeing the Solution Exchange enabling thriving innovations.

The Chair asked for further clarification on the delivery targets and challenged how much of a stretch target they were given current sign-up rates the programme has achieved. The Director of Data Management and Transformation advised that there are currently 73 trusts live with the FDP and the target for the year is to achieve 115 trusts. Although there are currently 110 trusts gained up to the FDP, each will be required to be onboarded and supported through to delivery which takes approximately 12 weeks. In addition, the programme are aiming to have additional community and mental health trusts live with the FDP. The targets set are in line with resource and funding allocation to deliver against.

A member asked for further information on the Single Analytical Environment including which data sources and direction are in mind to fulfil this function. The Director of Data Management and Transformation advised that the Single Analytical Environment uses data that has already been processed within NHS England. The FDP Head of IG confirmed that existing directions remain in place, with the Single Analytical Environment using data for the same reasons and under the same directions. For every product, there is a robust IG process to ensure that directions are reviewed to be assured that data is being utilised in the way the directions dictate.

Information governance update

The FDP Head of Information Governance and NHS England Deputy Director of Data Collection and Delivery took the group through an overview of the National data integration tenancy.

NHS England needs to collect, process and manage national data, including personal identifiable data, in accordance with its statutory duties; currently there are too many platforms and products underpinning these activities.

Navigating and using multiple collection mechanisms increases burden for our users (data providers) and running and maintaining the platforms and products is time consuming and inefficient for our internal teams.

As part of its statutory duties, NHS England is the ‘national safe haven for data’ and currently collects, processes and manages over 400 national data collections, including personal identifiable data.

This data is then used, in accordance with the relevant legal basis, for analytics, insights and research within NHS England and within the wider system.

The technical landscape currently underpinning these collection, processing and management activities is a combination of platforms and products from a range of previous organisations (former NHS England and Improvement, NHS Digital, Health Education England).

There are over 25 separate collection mechanisms and over 6 different processing and management platforms which is a burden for providers to use and navigate and for NHS England to run and maintain.

The National data integration tenant (NDIT) will be the secure national safe haven for data collection, processing and management for NHS England, including for the processing of identifiable data. This means:

• NDIT will provide a simple and clear uniformed route for data collection management and processing for NHS England
• NDIT is a separate, secure ‘national safe haven for data’ that collects and processes data prior to it being pseudonymised (for identifiable data) and transferred onto other systems, including NHS England’s national Federated Data Platform (FDP) instance
• NDIT is part of the FDP infrastructure, underpinned by Palantir Foundry
• NHS England are the data controllers and/or processors of all data currently expected to be collected and processed in NDIT, in accordance with existing directions and information governance
• over time, NDIT will replace other NHS England data collection, processing and management platforms and products, becoming the single ‘national safe haven for data’

The NHS England Deputy Director of Data Collection and Delivery advised that there are several benefits, including enabling the movement towards:

• granular, event-orientated data versus grouped or summarised data sources
• regular, small data transfers versus infrequent large batch transfers
• minimising the number of times we copy data, by utilising federation techniques for accessing data where appropriate
• improving data quality and validation by applying it closer to the original source data
• alignment with the canonical data model

The NHS England Deputy Director of Data Collection and Delivery advised that the NDIT is in mobilistaion phase with a focus on key collection areas such as virtual ward, cancer waiting times, and local costing collection.

A member of the group asked for further clarification and to check their understanding that NDIT is a rationalisation of multiple collections. The member of the group queried if it would result in different data being collected and processed and if there is a need for new data protection impact assessments to be created. The FDP Head of IG advised that NDIT is a core capability of the FDP, and the data is already being collected, has a lawful basis, and is already being processed in the same way within NHS England, NDIT provides an opportunity to move it into a different infrastructure. As it is in FDP, NDIT will follow the FDP information governance framework and associated documentation and processes. The FDP Head of IG advised that the NDIT data protection impact assessment (DPIA) allows data to land in NDIT but if there was an ask to move that data and process it then an additional DPIA would be required to detail the processing of the data. This would be the case if an FDP product wanted to process NDIT data, a DPIA would be required to be developed and approved. The FDP Head of Information Governance clarified that the NDIT DPIA outlines which data is landing in NDIT, but any new data sets would require the DPIA to be updated.

A member of the group asked whether by moving the data, will it be more accessible to people. The FDP Head of IG advised that the ability will be to reduce access as this process will reduce multiple system access into 1 system to have a common pool of data.

A member of the group asked if an infographic of how NDIT will operate can be shared. The FDP Head of IG agreed to provide this.

A member of the group challenged the ability for subject access request to maintain the provision of human interaction given the potential risk in releasing medical data and challenged who the data controller will be. The NHS England Deputy Director of Data Collection and Delivery advised that access to data will not be granted on NDIT, and data will pass through privacy enhancing technology into an FDP analytical environment which will be a single set of data but will be partitioned depending on the governance of that data. The FDP Head of IG advised that, for any subject access requests, these will continue to be handled in line with the policy which requires ‘human interaction’. The FDP Head of IG emphasise that NDIT is not an artificial intelligence tool but a repository in the FDP.

A member of the group challenge how NDIT will fit in with wider elements such as single health and care records, GP data, and registries. The member advised it would be helpful to understand how NDIT fits into other discussions that are taking place regarding data in the NHS. The FDP SRO outlined that this element is still being worked through with key initiatives such as Single Patient Record will focus in the future on how data can be collected tougher.

The FDP Head of IG advised that given timing they will not be able to cover the IG element of NDIT but agreed to bring this back to the next meeting.

Action: Head of IG to bring NDIT back to the next meeting to discuss IG elements.

Action: Infographic of NDIT to be developed and shared with the group.

FDP public feedback analysis and communications recommendations

The FDP Lead Senior Communications and Engagement Manager provided an overview to the group on the analysis of the public engagement portal submissions, outlined several recommendation areas identified, and how they are being addressed in the FDP communication and engagement strategy.

Key themes from the analysis were categorised into the following themes:

Transparency

The recommendations included the need to create clear, accessible materials explaining exactly how patient data is protected, develop case studies showing tangible benefits of the NHS FDP, and provide detailed information about opt-out processes or reasons behind lack of opportunity to opt out. The FDP Lead Senior Communications and Engagement Manager provided several ways the programme is addressing these recommendations, including:

• the public facing webpages and information have been co-produced with our patient panel this includes text, imagery, animations, written and video case studies and easy read explainers
• the programme will continue to co-develop public facing information with the patient panel and explore new formats for the information
• the programme has several case studies available on the NHS England website and are constantly working to develop more
• information on opt-outs is available on the NHS England website and work is underway with NHS England and DHSC to develop further public facing communications and campaigns to support public education on the use of data within the NHS

Stakeholder engagement

The recommendations included the need to continue to develop targeted communications for different stakeholder groups and investigate potential for hard copy leaflets with high level information on data protection in the NHS. The FDP Lead Senior Communications and Engagement Manager provided several ways the programme is addressing these recommendations:

• the programme has a number of governance groups in place which covers a wide range of stakeholders. This allows the programme to receive feedback and support the development of targeted and tailored communications
• in addition, there are a number of ‘touch points’ with key stakeholders and workforce groups
• where possible messaging is tailored based on the audience. In addition, a taskforce has been established to look at how the programme can further message to specific groups and roles across organisations

Trust building

The recommendations included the need to focus on explaining the procurement process and safeguards in place, highlight NHS control over data and system governance, and demonstrate value for money through concrete examples. Although this recommendation is based on historic data, the FDP Lead Senior Communications and Engagement Manager provided several ways the programme has addressed these recommendations:

• the NHS England website was updated throughout the procurement with the latest information
• a large amount of information is available on the FDP website regarding security, privacy, and information governance, with further work being carried out to bring these elements into key messaging. This includes the scoping of further animation videos of which a video focused on security is due to be published by Autumn 2025
• the programme continue to publish case studies which will continue to focus on benefits being realised.

The Chair asked whether any public engagement plans will take the learning from wider deliberatives on the use of patient data. The FDP Lead Senior Communications and Engagement Manager advised that the FDP are liaising with DHSC and the Large-Scale Public Engagement team to ensure that duplication is avoided, and instead further engagement will compliment activities carried out to date.

A member of the group advised that there was a motion at the UK Local Medical Committee Conference regarding data controllership of data records, highlighting that this is still a key topic. The member of the group queried when engagement on this matter would take place. The FDP Lead Senior Communications and Engagement Manager advised that this was currently being scoped as the team needs to ensure alignment of engagement with wider programmes within NHS England.

FDP community offer

Due to time constraints, the FDP Transforming Operational Delivery (TOD) representative provided a brief overview on the FDP community offer development and agreed to attend a future meeting to cover the intended content for this meeting.

The FDP Transforming Operational Delivery workstream focuses on identifying where the FDP can bring value to serviced users and patients. The workstream aims to establish a consistent approach to understanding how the FDP can bring value to our frontline staff. To do this, a series of steps have been taken in engaging with a range of teams and organisations to understand national strategic priorities, local strategic priorities, and clinical/operational/digital ‘pain points. This has included the delivery of a workshop with community organisations to further scope and identify potential products and solutions that the FDP could provide. The TOD team has also set up a regular forum to allow continued engagement and to receive regular feedback from key stakeholders.

Currently the team have identified potential products that community organisations may be interested in, of which these will go through the robust FDP product development framework.

Action: FDP community offer to be brought back to a future meeting.

Any other business and close

The Chair advised that the proposed revised Terms of reference have been shared with the group. The Chair asked if all members could review and provide any feedback or comments by Friday 9 May. This will be brought back to the next meeting for final sign off.

A member of the group asked whether there will be a response from NHS England to the most recent Data and Analytical Officer Network (CDAON) letter and if there is any information that could be shared with their organisation to support any further response requests.

Action: All Check and Challenge members to review the proposed revised Terms of reference and provide comments by Friday 9 May.

Action: The Director of Data Management and Transformation, NHS England, to reach out to the member of Check and Challenge regarding the response to the CDAON Letter.