Organisational attendees

• National Voices
• Office of the National Data Guardian
• Association of Medical Research Charities
• Nottingham University Hospitals Trust
• Healthwatch
• Understanding Patient Data
• Royal College of Surgeons
• Academy of Medical Royal Colleges
• Patients Association
• NHS Frimley Integrated Care Board
• North West London Integrated Care System
• UNISON
• BMA
• NHS England
• Department of Health and Social Care
• Academy of Medical Royal Colleges

Apologies received

• RCGP
• Information Commissioner’s Office

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 from previous meeting

The minutes were approved by the group for publication.

A request was made for the actions to be reviewed to reincorporate an ask for additional opt-out guidance.

Action: Actions to be reviewed to identify further development of opt-out guidance.

Large scale public engagement

DHSC colleagues presented an overview of the wide scale public engagement planned for data for the next financial year.

Over the last year the team have been conducting research into public attitudes towards data. This is a foundational piece of work to ensure understanding of perspectives and attitudes when conducting engagement. The research was designed and delivered in collaboration with the Data Strategy Advisory Panel.

The large-scale public engagement aligns with the commitment to undertake in depth engagement, as part of the published “Data Saves Lives” strategy (2022).

The large scale public engagement programme has received up to £2vmillion to deliver public engagement until March 2025. An external supplier has been procured, with recruitment of representatives of the public due to start. The large scale public engagement programme are in the design phase and are working closely with multiple internal stakeholders to utilise a large range of expertise, as well as developing national and regional approaches to engagement.

The large scale public engagement programme is anticipating the delivery of three national deliberations, complimented by focus groups and quantitative surveys. These activities together will form one cohort of engagement, of which the programme expects to deliver three cohorts of engagement over the programme. The first deliberation is due to take place in April 2024.

Key topics of the engagement will include; the data pact, the transparency statement, and standards for public engagement (as stated in the “Data Saves Lives” publication (2022). Engagement will also include topics such as; the reform of the opt out system, governance of secure data environments, commercial models and commercial principles, contextualised uses of data, expectation of involvement in strategic NHS decision making, and the linkage between NHS and non NHS data.

Findings from the large scale public engagement will be published in periodic reports between each phase of the engagement, with the final report due in March 2025. An initial literature review will be completed to ensure duplication is avoided and a foundation is built to build upon.

The programme will be evaluated by an independent evaluator, of which procurement for a supplier has recently commenced.

The programme structure includes two advisory groups; The Health Data Public and Patient Engagement and Communications Advisory Panel, and the Data Strategy Advisory Panel.

The large scale public engagement team agreed to bring regular updates to the group, and also outlined the intention to utilise and support key programmes such as the Federated Data Platform via feeding back on the key topics to support understanding and learning of the publics’ perspective.

The group discussed the balance of engagement scope and scope of public influence, particularly in regards to elements such as regulatory and technical requirements. The large scale public engagement programme are taking elements such as this into consideration as part of the design process for engagement.

The group asked if the large scale public engagement programme would look to engage with independent organisations, particularly as part of the design phase. The large scale public engagement leads confirmed that, now the procurement is completed, they will be looking to broaden out engagement to ensure a variety of voices are brought into the design and deliberations. This includes engagement with established patient access groups.

The group recognised that the large scale public engagement will not be engaging specifically about the Federated Data Platforms programme, but queried how the Federated Data Platforms programme will engage with the public. The response to this question was covered in the FDP-AS and PET update agenda item.

The group suggested that it would be helpful to understand what the outputs, and possible recommendations, of this engagement will be and how will they be communicated on a regular basis from the start. The large-scale public engagement team agreed to take this away and build into their design process.

The group emphasised the importance of steering groups to support deliberations. The large scale public engagement team confirmed this consideration will be built into the design phase.

The group highlighted the dynamic of interdependencies and cross cutting themes and discussion areas of the three deliberations, with recognition that deliberation groups may require repeated discussion areas.

The group highlighted to importance of feeding back to the Federated Data Platforms programme on key topics such as opt out which will require careful consideration in design. A member of the large scale public engagement programme shared their contact details with the group in case further questions or discussions were required regarding opt out engagement. The Head of Communications confirmed that close collaboration has commenced and agreement for appropriate sharing of outputs and alignment to support programme direction.

The Chair outlined the importance of conducting and reporting the research to be set within the context of discussions that have taken place to date. The Chair emphasised the need for close monitoring of the recruitment of participants to ensure a genuinely diverse range of people are recruited.
The Chair thanked DHSC colleagues for their presentation and updates.

Action: Further update on the large scale public engagement, including outputs of the initial research, to be brought back to a future meeting.

FDP-AS and PET update

The Federated Data Platforms (FDP) Programme Director provided an general update to the group.
Platform enablement has continued, and activities are a long way through in terms of the development of the 13 core capabilities into the platform. Work is also taking place to ensure templates for the national and local instances of FDP are ready for deployment. The programme has been working with Cyber Security teams to ensure cyber assurance processes are in place and signed off. This includes clinical safety teams as well. The Technical Design Authority have been overseeing product development, templatization, and testing.

Platform enablement is due to be completed on Wednesday 13th March 2024, after which the programme will move into transition. The transition phase of the programme will see the move of existing tenants onto the new FDP tenant, of which work is already underway to ensure tenants are prepared for this movement and understand what this will mean for their organisation.

Work has commenced to develop a new FDP product function, and to ensure that the end-to-end process for developing products from ideation to commissioning is clearly set out.

The programme is currently preparing for the Government Major Projects Portfolio (GMPP) Gateway 4 review which will be carried out by the Infrastructure and Projects Authority (IPA) at the beginning of March 2024.

The Head of Communications provided an overview of the current findings from the FDP Public Engagement Portal.

The FDP Public Engagement Portal was launched to enable stakeholders to receive quick responses or sign posting to information regarding the programme, as well as submitting feedback or registering interest for engagement initiatives.

Since the FDP Public Engagement portal was launched, 418 unique users have visited, of which 96 expressed an interest in taking part in future engagement activity. 44 questions have been asked and answered, and 15 people have submitted feedback since the portal was launched.

Sentiment analysis was conducted on the feedback. Key themes of feedback to date includes data privacy and security, lack of trust, procurement, lack of patient choice, scepticism regarding claimed benefits, and justification for some intended uses of data.

The Head of Communications provided an overview to indicative demographics of the 96 individuals who expressed an interest to be involved in engagement and had opted to disclose this information. The indicative summary showed a good range of Gender, Age, and views on use of health data by NHS. However, less diversity was observed for ethnicity, health conditions, and caring responsibilities. In terms of the proposed next steps of engagement, a key element will be to ensure wise engagement to achieve appropriate representation.

The group queried whether the were any correlations within the data, particularly between those identifying as having a health condition and those who were less concerned about their data being shared. The Head of Communications agreed to review the data to identify if this is a correlation, but referenced previous research has already identified this link.

The Head of Communications outlined the proposed next steps to undertake a number of local engagement events for the public to hear about FDP and, through discussion, capture insight into areas of interest and expectation to develop national and local communication plans, and provide evidence to ensure the programme can meet their commitment to working in an open and transparent manner, meeting the expectations of the public.

The FDP Senior Responsible Officer advised the group that any input into the development of these next steps would be welcomed.

The group commented on the portal being a position mechanism for setting expectation on how the programme intends to engage with the public and supported further promotion of the portal.
The Head of Communications confirmed that the sampling for engagement will include consideration on how to extend its’ reach into different parts of the community to ensure true representation.

The group asked how the FDP programme distinguishes its offer from other local and national initiatives being communicated, and if there are plans to have joined up communication and engagement. The FDP programme SRO outlined that work is underway to align and have joined up approaches where appropriate, as well as looking for opportunities to display key learnings at a national and local level through a range of initiatives such as case studies and blogs.

NHS Confed lead to get in touch with Head of Communications to discuss engagement plans for trusts and ICBs.

Action: Head of Communications to analyse FDP Public Engagement Portal to identify correlation between identifying as having a health condition and level of concern in data being shared.

Action: NHS Confed representative to contact Head of Communications to discuss engagement for Trusts and ICBs.

Information governance update

The Director of Privacy and Information Governance presented a brief update to the group on key information following the circulation of the FDP Memorandum of Understanding and the FDP IG Framework.

NHS England will have an instance of the FDP with products in it. Trusts and ICBs will have separate instances of the platform with products in it. The products are not the same and in all cases across national and local, and it is important to note that the instances are separate.

There are currently five initial use cases that have been approved for the FDP; supply chain, elective recovery, vaccines and immunisation, care coordination, and population health. Going forward, any new products will sit within one of the five use cases.

ICBs and Trusts who will be using local instances of FDP will be required to complete relevant data processing agreements, supported by the Memorandum of Understanding and contract.
The IG framework sets out how the programme will conduct IG across the national and local instances of FDP, and to ensure IG is being done consistently, transparently, and to a high standard.

There will be two overarching Data Protection Impact Assessment (DPIA), one which relates to the Federated Data Platform and one which relates to Privacy Enhancing Technology (PET). Separate from the overarching DPIAs, there are national and local product DPIAs. For every product used on the platform, there will be a DPIA. There will also be two ontology DPIAs which relates to the data ontology that underpins product functionality. There will also be annexes to the Data Processing Agreement for each of the product.

The FDP Privacy Notice and Transparency Information approach was presented to the group. The approach is based on NHSE user research and is a 4 level structured approach from FDP Transparency Information for Public (Level 1) to FDP Product Privacy Notices (Level 4). For every product, there will be a privacy notice for that product.

The Director of Privacy and Information Governance opened the discussion to the members.
The group reflected that the documentation uses a lot of technical language and having supplementary materials to support engagement if helpful.

The Director of Privacy and Information Governance outlined the data controller arrangements to be put in place. Within the IG framework the Trust/ICB is referred to as the ‘FDP user organisation’.

The group queried whether all DPIAs will be published and what is the process if organisations feel that the risks haven’t been mitigated. The Director of Privacy and Information Governance confirmed the intention to publish the DPIAs, with a principle in the IG Framework which sets out that DPIAs should be published by local organisations as well as national.

In terms of engagement, a deep dive workshop has been arranged with colleagues from the National Data Guardian (NDG) and the Information Commissioner’s Office (ICO), with separate regular engagement ongoing. Part of the deep dive will be to demonstrate the reality of how data flow is managed in the system, which will support creating context in which to set the DPIAs.

The FDP information Governance Lead outlined the establishment of two Information Governance Groups which have been regularly meeting over the last 18 months. One group is the System IG Group which is attended by IG professionals across the NHS. The second group is a Specialist External IG Group which is attended by NDG, ICO colleagues, as well as other external stakeholders. Both groups have consistently been collaborated with to design, develop and review FDP IG documentation.

The group noted the importance of having adequate time to review and provide feedback on draft documentation.

The group recognised the circulation of the documentation as an important step froward, and helpful to see the information shared.

Action: The slides from the presentation to be shared with the Group.

Any other business and close

The next meeting is due to take place on Friday 15 March 2024.

Agreement to include system and regional wide engagement within the FDP Pilot overview agenda item for a future meeting.

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