Action notes - Thursday 23 November 2023

Date: Thursday 23 November

Time: 9.30am to 11am

Location: MS Teams dial in

Agenda items/minutes/action notes

Introductions

Panel members were welcomed to the meeting by the Chair, who also ran through the agenda.

Formal noting of previous meeting's action notes

Due to technical difficulties, panel members did not receive the action notes of the previous meeting. The panel have agreed to review the action notes individually, for approval by Wednesday 30 November.

Federated data platform programme update

The Head of Communication and Engagement for the Federated Data Platform (FDP) provided a programme update to the panel following the announcement of the contract award. In addition to the procurement of the platform itself, the programme has procured privacy enhancing technology through a separate supplier to provide an added layer of data security. It was noted that throughout the process, it was important for the FDP programme to maintain transparency and engage with patients.

Panel members raised some concerns following the announcement of the contract award, specifically around how patient data will be processed and the ability to opt out. Panel members were informed that opt outs do not apply to the current use cases of the FDP, but that each use case will be individually assessed and opt outs will always be respected where they apply. Links to public FAQs, which include information about how opt-outs apply, were shared with the panel.
An FDP engagement portal has been established to provide a way for the public to leave feedback about any aspect of the FDP programme, ask questions not covered by the public information, as well as register to take part in FDP specific engagement activity. Feedback coming through from the engagement portal will be used to inform future engagement with patients and the system.

Panel members recognised the challenges in communicating the FDP to patients, noting that the benefits for patients needed to be highlighted strongly in order to instill confidence among the public. The Head of Communication and Engagement confirmed that showcasing patient benefits, through case studies is a focus of future communication, and reminded the panel that a number of case studies have already been published.It was noted that collaboration with Integrated Care Boards (ICBs) and the awarded supplier was essential in developing consistent messaging that will help to build and maintain confidence.
Panel members were informed that patient engagement has been integral to the programme, and will continue to be an important aspect of its success. Panel members asked what the next steps were for the programme. The programme is currently working with the supplier on transitioning pilot sites onto new technology as well as preparing for implementation, onboarding of new FDP sites and decommissioning old technology.

GPDPR programme update

The Programme Manager for GPDPR provided an update to the panel on technical developments for potentially accessing GP data.

Panel members were provided with an overview of the journey the team has been on, including the role of the patient panel in shaping the design. It was recognised that it remains important to balance the technical solution with clear information governance and assurances around patient choice.

It was noted that there needs to be greater clarity around the connections and use cases across FDP, OpenSAFELY and GP data.

Panel members agreed that a follow up session is required to explore this topic in more depth.

Action: Panel members requested a briefing paper and another discussion at a future patient panel meeting.

Any other business

The Chair invited input from attendees regarding content of the PPECAP meeting or any other business. No points were raised.