Agenda

Attendees

1. Welcome and Housekeeping

The Chair welcomed members to the meeting and confirmed quorum. The agenda was outlined, covering a presentation on the NHS Federated Data Platform (FDP) and a panel feedback and reflection session. Members were thanked for their attendance at the final meeting of 2025.

2. Review of previous minutes and declarations of interest

The previous meeting minutes were reviewed. A member requested an amendment to the use of the term “harder to reach” in the minutes, noting this was not language the panel would typically use. The group discussed preferred alternatives, including “underrepresented,” “underserved,” and “seldom-heard voices.” The Secretariat agreed to review the transcript and update the wording accordingly.

A further amendment was requested to the section on artificial intelligence around AI bias. The Chair agreed to revise the language. No other inaccuracies were raised, and the minutes were accepted subject to these amendments.

No declarations of interest were noted.

3. NHS Federated Data Platform – patient group presentation

A member of the NHS England communications and engagement team presented draft slides about the NHS Federated Data Platform (FDP), designed for use with patient participation groups and similar audiences in NHS Trusts.

The presentation covered:

• What the FDP is and how it works, including how it integrates data from multiple NHS systems to improve care coordination, reduce delays, and support more efficient services.
• Real-world examples from NHS trusts, including improvements in discharge times, surgical scheduling, and cancer pathway management. The latest NHS FDP statistics and benefits.
• Security and privacy: patient data is encrypted, access is restricted by role, and the supplier acts only as a data processor under strict NHS instructions, with no ability to access, use, or share NHS data for its own purposes. All decisions about data use are made by NHS England and local NHS organisations. Patients retain the right to see who has accessed their records and to raise concerns.
• Two explainer animations, developed with input from the panel, were referenced as resources available for NHS trusts to use.

Panel feedback included:

• The presentation was well-rounded and clearly written, with accessible language that was appropriate for a non-specialist audience; this was positively noted.
• The presentation was considered too long overall; slides should be condensed.
• Some slides were particularly text-heavy; sections using six summary boxes was highlighted as more effective.
• Greater clarity was requested on which patient records are included or excluded from the FDP, how data flows into the system, and how it interacts with other NHS systems.
• It was suggested that the presentation should acknowledge limitations alongside benefits, rather than presenting only positive outcomes, to avoid appearing one-sided.
• It was suggested that the person who developed the presentation should deliver it, as their familiarity with the material came across positively.
• The presenter was asked to consider framing security and privacy information in a way that reassures audiences without raising concerns where none previously existed.

The presenter thanked the panel for the feedback and agreed to revise the slides, accordingly, including clarifying data inclusion and exclusion and system interoperability.

4. Panel feedback and reflection session

The Secretariat facilitated a structured feedback session to help shape future meetings. Members were invited to reflect on their experience of the panel to date and to suggest improvements. A short survey was also shared for members to complete after the meeting.

Key themes included:

What was working well

• The level of detail in the minutes was valued by members, helping those who could not attend every meeting to stay informed and engaged.
• Presentations that used plain, accessible language and were clearly tailored to a public audience were well-received, with the current session cited as a positive example.
• The panel had generated strong, constructive contributions across its meetings, with members noting that engagement had been genuinely informative.
• The panel’s reputation was growing, with other organisations seeking to establish similar groups.

Areas for improvement

• Members expressed a need for feedback on how their input had been used. It was noted that presenters frequently came to the panel, received feedback, and were not heard from again. The panel asked for a formal process to be put in place so that presenters were asked to report back on what changes were made as a result of panel input.
• The Secretariat agreed to build a feedback loop into existing processes: when minutes are shared following each session, presenters would be asked to confirm what action had been taken on the panel’s feedback, and this information would be reported back to the group either in writing or at a subsequent meeting.
• Some members felt that the format of meetings did not always allow all voices to be heard. The importance of enabling diverse participation, including from those who may face barriers with digital tools, was highlighted.
• Breakout rooms were suggested as a way of encouraging broader participation; it was noted these had not been possible at the current meeting due to an absence.
• Members asked that presentations be structured to invite feedback as patients and members of the public, rather than as technical experts, so that discussions could be more focused and meaningful.
• It was suggested that a standard set of feedback questions could be developed for presenters to use, alongside a glossary of key terms and a summary checklist to support less familiar audiences.
• Guidance for presenters was referenced; the Secretariat noted that a guidance document had already been created and that pre-meeting calls were often held. It was agreed that this guidance would be reviewed in light of the feedback received and that panel members would be invited to contribute to any revision.
• Members highlighted the importance of ensuring that the panel clearly covers both health and care, not just health, and that this should be reflected consistently in how sessions are framed.
• A suggestion was made for senior beneficiaries of NHS data programmes, such as clinical or operational leads, to present to the panel more regularly to demonstrate real-world impact and maintain engagement.

5. Payment update

The Secretariat provided an update on the payment system. Most panel members had now submitted claims using the online system. The Secretariat agreed to follow up with anyone with any ongoing difficulties accessing the claims system.

6. Any other business

A question was raised about whether holding both a Patient Public Voice (PPV) role and a Patient Safety Partner (PSP) role counted as one or two positions. DHSC agreed to take this question away and provide clarification.

The Chair thanked all members for their contributions throughout 2025. The next meeting was confirmed for 27 January 2026 (morning session, starting at 10:00).