Patient and Public Engagement and Communications Advisory Panel – minutes and action notes: 1 August 2024

Date: 1 August 2024
Time: 9:30am to 10:30am
Location: MS Teams

Agenda

­­­TimeAgenda itemOwner
9:30amIntroductions Review of previous minutes and declaration of interestHead of UPD (Chair)
9:35amNHS FDP Programme UpdateLead Senior Communications and Engagement Manager 
10:00amLarge-Scale Public Engagement UpdateSenior Data Policy Advisory – Stakeholder and Public Engagement 
10:25amAny other BusinessHead of UPD (Chair)

Invitees

  • Head of UPD: Understanding Patient Data (CHAIR)
  • Senior Data Policy Advisory – Stakeholder and Public Engagement: DHSC
  • Stakeholder and Public Engagement Lead: DHSC
  • Representative: National Data Guardian
  • Representative; National Data Guardian
  • Lay member: Independent member
  • Lay member: Independent member
  • Lay member: Independent member
  • Lay member: Independent member
  • Lay member: Independent member
  • Lay member: Independent member
  • Lay member: Independent member
  • Lay member: Independent member
  • FDP Head of Communications: NHS England

Apologies

  • Public Involvement Lead: Association of Medical Research Charities/Cancer Research UK
  • Project Manager: NHS England

Upcoming agenda items

  • To be confirmed

Meeting notes

Agenda item 1 – Introductions

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

Independent member was welcomed as a new meeting attendee.

Review of previous minutes and declaration of interest – No revisions to minutes or declarations of interest.

Agenda item 2 – NHS FDP – Programme update

Lead Senior Communications and Engagement Manager provided an update on the NHS FDP programme.

The NHS FDP Solutions Exchange Programme was highlighted as an early version went live on 31 July. Lead Senior Communications and Engagement Manager explained that the Solution Exchange will act as a front door to products available on NHS. The ambition is to help scale and share local solutions so that Trusts did not have to always develop their own solutions. Solutions can be developed once and shared meaning that all NHS trusts could benefit from them.

A version of NHS FDP Solutions Exchange materials will be brought to a later PPECAP meeting for feedback from members.

The team were also in the process of developing easy-read guides for PET and a procurement proposal for NHS FDP specific public engagement; these will also be brought to PPECAP once ready.

Agenda item 3 – Large scale public engagement update

Stakeholder and Public Engagement Lead presented an update on the programme of Large-Scale Public Engagement.

The agenda item included a reminder of the methodology, overview of Cohort 1, initial findings on each topic engaged upon, implications for policy development and feedback from the independent evaluator.

Questions and comments from members:

  • Were the overall findings positive? There was a mix, many participants were positive across all tiers, and their views changed following the deliberative process. However, some participants voiced negative opinions on the topics. All views were useful for informing policy development.
  • Did the researchers find that the seldom heard audiences in Tier 2 were more negative? Not particularly, however some of the participants were more cautious about sharing their data due to negative experiences with NHS services in the past, or the fear that sharing the data would cause negative treatment.
  • One member appreciated the detailed work in this area, and effort that had been put into it. The findings look like they will be really useful for policy development.
    Stakeholder and Public Engagement Lead offered to deliver a session at a future meeting to discuss the detailed findings from the engagement once they were available.

Agenda item 4 – any other business (AOB)

One attendee asked the panel if they were confident with the difference between FDP and SDEs? They were terms discussed a lot at PPECAP meetings, and as the work moves quickly the meanings can alter.

  • Members commented that they were only aware because of attendance of PPECAP. However, gaps between discussion of the topics at PPECAP mean the knowledge isn’t consolidated.
  • One member referenced an experience of working with colleagues on SDEs, otherwise they wouldn’t know what these were.
  • Lead Senior Communications and Engagement Manager set out the difference between the two, referencing information for operational purposes, and information for research. It was an aim of NHSE to have a page with FAQs to outline the differences.
  • It was highlighted that use of acronyms are an issue for lay members across NHS programmes. It was suggested that a graphic, or FAQ slide would be helpful.

One member questioned if they needed to do training due to an expiry of some display screen equipment. Lead Senior Communications and Engagement Manager would pick this up with the relevant people.

Another member asked if PPECAP would be meeting in August? There would be a meeting on 15th August, but details regarding the other one would be confirmed.

Stakeholder and Public Engagement Lead asked that all timesheets were sent to her, as temporary secretariat for PPECAP.

The chair closed the meeting.

Action: Secretariat to consider developing a FAQ slide for PPECAP.

Action: PPECAP meeting in late-August to be confirmed by secretariat.