Attendees

• Chair – representing Understanding Patient Data Presenter representing NHS England
• 3 members of the Secretariat Presenter representing DHSC
• 6 PPV Partners Representative from Cancer UK
• Representative from National Care Forum Representative from Office of the National Data Guardian
• Representative from NHS FDP Communications

Date of next meeting 30 June 2026, 4pm to 6pm

Introductions

The Chair opened the meeting and welcomed attendees. As this was their first meeting as Chair, a round of introductions were held so members could introduce themselves. Members were also invited to add further detail about their interests and experience to the chat.

The minutes from the previous meeting held on 28 April 2026 were agreed subject to changing an inconsistency in how individuals were named in the minutes.

No declarations of interest were noted.

New process for minutes

A new approach to the minutes from this meeting were presented. Going forward, there would be a single set of ratified and published minutes, replacing the previous two-version system. The updated format would record attendees, themes of discussion and any actions arising, but would not identify individuals or attribute comments to named people. This approach aligned with practice adopted by similar panels across NHS England and DHSC.

It was noted that this change would take effect from this meeting and that the secretariat would work with the group to ensure the format met members’ expectations. The change was partly driven by the need to manage resources efficiently during a period of organisational change.

Update from last meeting

This item arose from previous meetings in which members had requested an opportunity to discuss the supplier of the NHS Federated Data Platform’s role in the NHS, including a suggestion that the supplier be invited to address the panel.

The Communications Lead from the NHS Federated Data Platform (NHS FDP) explained the supplier remained a compliant and contracted provider of the NHS FDP, decisions about their future role would be taken by ministers and it would not be an appropriate topic for this group to take a position on. Inviting the supplier to the panel would therefore not be taken forward on that basis.

However, they acknowledged that many of the concerns raised by members related to broader issues of data access, security and public trust — areas the group could meaningfully contribute to. The proposal was to bring existing public-facing messaging on these themes to the group for review and refresh.

Discussion from members covered:

• Members accepted that the contracting decision itself was beyond the group’s remit but felt that public trust concerns around the supplier were live, ongoing and increasingly prominent. Several members reported regularly encountering supplier related anxieties in other PPIE forums.
• It was suggested that the most effective approach was not to avoid the subject, but to acknowledge public concerns openly and explain clearly how risks were being mitigated. Actively recognising a concern and setting out the response to it.
• Members noted that the benefits of the NHS FDP needed to be communicated more clearly and consistently. Success stories from hospitals already using the platform were seen as a powerful way to build public confidence.
• One member shared that in conversations with patients, awareness of the supplier as a concern was relatively limited, suggesting that the most vocal opposition may not reflect the majority view. However, the potential for the issue to grow was acknowledged.
• One member drew a parallel with the rollout of the NHS capacity tracker, where working directly with providers and communicating transparently about changes had helped to overcome early resistance. A similar reactive communications approach could be useful for the NHS FDP.
• A member of the secretariat noted that work was ongoing to find better ways to display NHS FDP benefits publicly and hoped to bring something to a future meeting for co-production with the group.

Action: The lead for NHS FDP Communications agreed to feedback discussions to the leadership team with consideration to bringing existing public-facing messaging to the group for review and refresh.

Data access – public comms – feedback

A revised version of the Data Access Request Service web pages was presented to the panel, which had been updated in response to feedback from the previous meeting. Key changes included:

• A clearer explanation of what health data is, drawing on wording used by regional Secure Data Environments.
• More examples to illustrate how data is used in research and NHS service planning.
• A description of who could access data, including academics, NHS organisations and some commercial bodies, with reassurance that access must be for public benefit.
• Information on data security placed higher up the page, in response to feedback that this was a priority concern for the public.
• A move away from dense text towards a more visual and accessible format, including the use of images.

Feedback from the group included:

• Keeping language simple, avoid being text heavy and to follow the 5 safes framework as a structure.
• There was a brief discussion regarding the need for clarity relating to the operational costs of processing and releasing data.

The presenter confirmed that the publication timeline was flexible and that further revisions could be made before the pages went live. They offered to share a revised draft with the group or with individual members, The Office of the National Data Guardian offered to review from a communications perspective.

GP engagement

An update on a new engagement programme with focus on frontline GPs and practice managers was presented to the panel. The programme aimed to gather direct insight from a wide range of GPs.

The programme comprised the following stages:

• A short survey (approximately 15 questions) targeting around 500 GPs, to be sent out imminently
• A foundation event in June to launch the engagement programme
• A series of deliberative workshops exploring trade-offs and safeguards around GP data use, structured around three lenses: individual patient care, NHS service planning, and research
• A sense-making summit to consolidate findings and develop policy recommendations
• Closing-the-loop events to share findings with participants

The overarching question for the deliberations was what safeguards GPs would need in place to be comfortable with unified data access across health and social care.

Feedback from the group included:

• Members highlighted the importance of giving GPs genuine space to voice concerns, noting this was key to producing findings that could drive real change.
• Concern was raised about the current context of industrial relations between GPs and the government, and the risk that this could affect engagement and trust. The secretariat confirmed that the team was working closely with DHSC colleagues leading those conversations to ensure the programme was appropriately sensitive.
• It was suggested that GPs were experiencing a transfer of responsibilities without a corresponding transfer of resources, which could affect willingness to engage. Whoever led the engagement would need to work hard to build trust with this audience.

Any other business

The Chair noted there were no items raised under any other business.

Reminders:

• The next meeting of the panel will take place on 30 June, 4pm to 6pm
• The deadline for submitting expenses is 5pm on Sunday 7 June

The Chair closed the meeting and thanked all members for a productive discussion.

Minutes produced by the secretariat. This is the authoritative published record of the meeting. Individual contributions are not attributed to named individuals.