Patient and Public Engagement and Communications Advisory Panel – minutes and action notes: 6 June 2024

Date: 6 June 2024
Time: 9:30am to 11:30am
Location: MS Teams

Agenda

Time Agenda item Owner 
9:30amIntroductions
Review of previous minutes and declaration of interest 
Head of UPD (Chair)
9:35amUser and Organisation Validation (Data for R&D Programme) Senior Policy Officer  
10:05am Break  All 
10:15am NHS FDP Programme updates  FDP Head of Communications 
10:25am NHS FDP Explainer Animation Business Development
10:55am Any other Business Head of UPD (Chair)

Invitees

  • Head of Understanding Patient Data: Understanding Patient Data (Chair)
  • Public Involvement Lead: Association of Medical Research Charities / Cancer Research UK
  • FDP Head of Communications: NHS England
  • Senior Data Policy Advisory – Stakeholder and Public Engagement: DHSC
  • Lay member: Independent member
  • Representative: National Data Guardian
  • Lay member: Independent member
  • Lay member: Independent member
  • Lay member: Independent member
  • Lay member: Independent member
  • Project Manager: NHS England
  • Senior Policy Officer: NHS England
  • Business Development: Palantir

Apologies

  • Lay member : Independent member 
  • Stakeholder and Public Engagement Lead:  DHSC

Agenda item 1 – Introductions

Panel members were welcomed to the meeting by the Chair and went through the agenda.

Review of previous meeting’s action notes and declaration of interest

The action notes from the previous meeting were approved.

No conflict of interests was raised. 

The panel was informed that large scale public engagement won’t be discussed at the panel until post-election.

Agenda item 2 – User and Organisation Validation (Data for R&D Programme) 

Senior Policy Officer briefed the panel on the SDE Policy User Organisation – NHS Research Secure Data Environment Network.

Key discussions:

The key tenets and the validation policy around NHS Research Secure Data Environment Network is to design a single approach of validating users and organizations that want to engage with our network. It will take around 6 – 9 months for the policy to be drafted and tested amongst the internal network and ensure that external customers compliers with the process and policy.

Formal go live is expected to be April – May next year, users and organisations will need to register themselves using an electronic process and will be validated before they can raise requests for access to data. 

The process will ensure that users are checked against the organisation they work for, and organisations are validated and must be compatible with NHSE values to access data.

Data access requests will be raised against the organisation name, the organisation will complete a basic electronic registration, sign a contract and, some checks from our commercial team will be carried out to ensure the organisation meets the set criteria. Validation is important but does not guarantee users or organisation access to data. For example, any user’s or organisation subject to international sanctions will not be given access to our data.

There will be clear guidelines on how to work with users and organisations that are compatible with NHS principles.

Feedback from PPECAP panel:

  • Emphasis on the need to have a comprehensive list of users and organisations subject to international sanctions.
  • Consult with the legal team and establish a clear legal process to avoid any form of litigation.
  • Review the background information provided by multinational companies before engaging with them.
  • The task of validating and checking the request, the users and the organisation is complicated. There is a need to organise regular training for the resources executing the role.
  • Very brief information on how people’s data are protected should be published with relevant advice from experts.
  • Organisations that want to access NHS data will need to be transparent and provide clarity around how much the organisation makes from the data and the percentage that will be given back to NHS

Action:

Senior Policy Officer to consult with the SDE Team to provide information and clarity around data protection that will be published online.

Agenda item 3 – NHS FDP Programme updates  

The transition of national NHS FDP products, local pilot sites and local products is well underway, with the first of the pilot sites transitioning to the NHS FDP in May 2024. Transition will continue through the summer ensuring the right support is in place to ensure a positive experience for trusts and NHS FDP users. Feedback will be gathered along the way and that feedback will help to refine the process for future transitions.

As local products and national products transition to the NHS FDP, privacy notices are published on the NHS England website.

Agenda item 4 – NHS FDP Explainer Animation 

The presentation was a continuation the panel had previously provided feedback on, and the agency prepared this presentation base on that feedback.

The style of the animation, the characters, the general timing of the images were shared for consideration by the panel.  

Feedback from PPECAP panel:

  • Images to be shape and colours must provide greater contrast for accessibility.
  • Consider the proportions of the images used e.g. heads are disproportionately smaller compared to the rest of their body.
  • The position of the image should picture the GP seated opposite the patient, in a position that is slightly more engaging.
  • The image should be very simple with standard format and not distracting.
  • The visual style reflects diversity and inclusivity.
  • The diversity of characters was welcomed and preferred to having a blue (or other neutral colour). The panel felt it is important that the animation reflects society.   
  • The animation should be noticeably clear, self-explanatory, understandable, and straight to the point.
  • Adding voice over in the video will help explain any elements in the animation.
  • Use a straightforward design to present the diverse types of data that are in different location across many trusts (representation of how one system can integrate with various data sources)

Action:

Business Development The panel’s feedback will be used to progress the development of the storyboard and presented back to the panel at a future meeting.

Agenda item 5 – Any other business (AOB)

Lay members were reminded to submit their timesheet on time before the end of the week, 7 June 2024.

The PPECAP meeting scheduled for the 20 is likely to be cancelled and reconvened for the 4 of July 2024 meeting.

Items for the next meeting – next iteration of the NHS FDP animation.

Future meetings on the large-scale public engagement activity will be scheduled for discussion later.

No other business was raised.