Agenda

Invitees

• Chair: Understanding Patient Data
• Privacy Specialist Office of the National Data Guardian: National Data Guardian
• FDP Comms: NHS England
• Senior Policy Advisor: DHSC
• 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
• Representative: Palantir

Apologies

• Deputy Chair: Association of Medical Research Charities/Cancer Research UK
• Representative: National Data Guardian
• Lay member: Independent member

Meeting notes

Agenda item 1 – Introductions

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

*redacted* was deputizing on behalf of *redacted* from the National Data Guardian.

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

Agenda item 2 – Updated NHS FDP explainer animation storyboard

*redacted* presented the first version of the NHS Federated Data Platform (FDP) Public Explainer Animation video to the panel. The panel commented on numerous drafts of the animation storyboard in previous PPECAP meetings.

The animation was generally received very well. Certain parts of the animation were repeated for in-depth discussion. Points raised by the panel for review were:

• Ensuring the voiceover matched what was being shown on screen.
• Slowing down certain parts of the animation – this was especially important for those with a visual impairment.
• Ensuring that the script made sense without the video – again important for those with visual impairment. A request to change the word ‘theatres’ to ‘operating theatres’ to be clear to a non-NHS audience.
• The colour scheme may cause potential issues for those with a visual impairment.
• For the final scene, it was not obvious that the patients were leaving hospital. PPECAP members suggested various options for resolving this, including walking down a corridor or patients being at home following hospital treatment.
• The NHS logo should be depicted throughout the animation, especially on hospitals.
• One member questioned if the animation would go through accessibility checks. The team confirmed the video would go through NHS central comms accessibility checks. There were also other options for accessibility, including subtitles, a plain text version and a listening option.
• It would be beneficial to have a link or landing slide for the public to follow if they wanted more information.
• One member questioned if there would be a shortened version of the animation for people who don’t have time to watch the whole animation.

*redacted* talked through a variety of options to resolve the comments PPECAP members had raised.

PPECAP members were asked if they thought the animation would explain the NHS FDP to someone who had not previously been aware of it. Panel members thought it would. Feedback was that it was a thorough summary of the NHS FDP and signposted where the public could go for more information.

Agenda item 3 – Powered by Data

The Associate Director of Comms gave an update on the Powered by Data campaign, covering the work that had gone on since the previous presentation to PPECAP.

The Associate Director of Comms presented the campaign performance from burst two which had been done with Biobank. The video had been streamed 4.5 million times, with 661,000 people watching the whole video, there had been 5000 reactions to the video with 400 shares

One member asked how Biobank contributed to the Parkinsons video. The Associate Director of Comms explained that they had contributed to the research, not the video itself.

The Associate Director of Comms explained Data for Research and Development had supported a separate campaign for Prostate Cancer Progress initiative. They released a video with Stephen Fry on NHS channels and hoped to be able to share this on social media in the future. The number of people signing up to the initiative had doubled which was a fantastic result. PPECAP panel members were shown the video that had been created.

The Associate Director of Comms presented videos that had been produced at North Tees Hospital. The video covered how the NHS FDP was helping people leave hospital quicker. The video featured a real patient’s story.

One video had been in colour, and other in black and white. The version in colour had been more engaging to members and could be seen as more positive. The Associate Director of Comms explained that this is done due to costs but would look at reproducing the whole video in colour.

The chair asked if panel members thought the elements of the video relating to data had come across enough. One panel member commented that they had not thought much about data following the video. The Associate Director of Comms explained that most people who accessed it would have seen previous pages that were more detailed about data, so they would have that knowledge about data use.

The next steps would be for this work continuing, with the backing of PPECAP members. PPECAP members appreciated the programme and confirmed their support.

The Associate Director of Comms would come back to the panel with the final results of the campaign and for their comments on future ideas for videos.

The Associate Director of Comms thanked panel members for their involvement in the production of these videos.

Agenda item 4 – Any other business

The Chair highlighted changes to who would chair the meeting in future months. Privacy Specialist Office of the National Data Guardian will chair the next meeting and Association of Medical Research Charities / Cancer Research UK will chair the meeting until December 2024. 

Changes to the terms of reference

The secretariat talked panel members through the draft changes to the group’s terms of reference. These had been widened to ensure more NHS data programmes had the benefit of PPECAP knowledge.

Timesheets and payments

The secretariat explained that they wanted to move from legacy NHS digital payment systems to the NHS England payment system. This would be quicker and easier for members with additional HR support for any problems.

A member of the patient and public voice team would be attending the next meeting to talk through the changes.

The chair closed the meeting.

The next PPECAP meeting is Thursday 26 September 2024.