Patient and Public Engagement and Communications Advisory Panel – minutes and action notes: 21 November 2024

Date: 21 November 2024
Time: 9:30am to 11:00am
Location: MS Teams

Agenda

­­­TimeAgenda itemOwner
9:30amIntroductions Review of previous minutes and declaration of interestPublic Involvement Lead (Chair)
9:35amPublic Engagement – Cohort 2 Tier 1 Initial FindingsDHSC
10:20amBreak 
10:30amImproving data transparency and accessibly of key performance areas within elective.Assistant Director of Elective Recovery Performance
10:55amExplainer of desktop exercise.FDP Communication Team
11:00amAny other BusinessHead of Understanding Patient Data

Invitees

  • Head of UPD: Understanding Patient Data
  • Public Involvement Lead: Association of Medical Research Charities/Cancer Research UK (CHAIR)
  • Senior Policy Advisor: DHSC
  • Project Support Officer: AGEM
  • FDP Communications: NHSE
  • Panel Member: Lay member
  • Panel Member: Lay member
  • Panel Member: Lay member
  • Panel Member: Lay member
  • Panel Member: Lay member
  • Panel Member: Lay member
  • Panel Member: Lay member

Apologies

  • FDP Communications Lead: NHS England

Meeting notes

Agenda item 1 – Introductions

The chair welcomed members to the meeting and ran through the agenda.

No conflicts of interest were raised by members.

Agenda item 2 – Public engagement – cohort 2 tier 1 initial findings

The Senior Policy Advisor gave a presentation about the Cohort 2 Tier 1 Initial Findings. The panel had been heavily involved in the development of the materials for the deliberations, so it was fitting to return with initial findings. These were based on limited analysis and are subject to change qualification and verification.

The panel were advised that the presentation would be redacted from meeting minutes due to the information not yet being released to the public.

Agenda item 3 – Improving data transparency and accessibly of key performance areas within elective

Assistant Director of Elective Recovery Performance introduced her area of work, and the priority areas being focused on. The presentation focused on the publication of waiting list data and how they could improve the transparency of the data, with a specific focus on how it is presented, accessed and used.

The panel was given an explanation of the consultant led referral to treatment waiting times, what was included in these statistics and what was currently published. The presentation also highlighted the ‘My Planned Care’ site, which aimed to support patients who were waiting for care.

The panel were asked for opinions on how the data could be presented in a more informative and interactive way.

Questions and feedback:

  • When does the waiting time start for patients? It starts from the point of referral from the GP.
  • The word ‘pathway’ is confusing for patients, referrals might be a more appropriate word as it’s the terminology a GP uses with patients. ‘Pathway’ sounds more like a systems way of looking at this and not an individual’s experience of referral for treatment.
  • ‘Consultant led’ was confusing to patients, it could be changed to be clearer.
  • One panel member gave a personal example of where the waiting list had been confusing for them, especially on when the waiting list begins.
  • ‘Waiting time starts at referral’ could be more explicit about who makes the referral e.g. ‘Waiting time starts when GP refers the patient to hospital.’
  • The waiting time to a first appointment is very important to patients, not just the wait time to the beginning of treatment.
  • From a communications perspective a diagram of a timeline to show the start point to end point (including mid points of referral, diagnosis etc) may be useful to a patient to clarify.
  • One panel members expressed that they were not aware of the ‘My Planned Care’ website.
  • ‘New periods’ is a confusing term – maybe new referrals?
  • One member expressed frustration with a recent experience where a lack of communication and scheduling had negatively impacted them.
  • If there was a media briefing or explainer sent to journalists, could this be re-formatted or distributed to the public. As this would be useful for patients to see.
  • The team could engage with the public to understand the user priorities, and build comms based on these.
  • Spreadsheet format is difficult for the public to digest, a graphic format is much easier.
  • Could there be a dashboard with graphics? This is how other programmes present data and is easier as patients don’t have to download a spreadsheet.
  • The websites and presentation should be tested from an accessibility perspective.
  • The dashboard from the National Data Opt-out was presented as a dashboard which is more accessible.
  • One member suggested that the Assistant Director of Elective Recovery Performance came back to a future meeting with potential options for members to feedback on.

The map on ‘My Planned Care’ was very useful. However, it was based on trust, not hospital name. This terminology was confusing for patients.

Agenda item 4 – Explainer of desktop exercise

FDP Communications gave a brief explainer of the desktop exercise to review how easy the new webpages were for the public.

There would be five webpages that members would have to find. Members were asked to spend no longer than an hour on the task, and given a deadline to send their feedback to the secretariat.

Agenda item 5 – Any other business

No participants raised any other business.