Action notes - Thursday 9 November 2023
Published 6 December 2023
Date: Thursday 9 November 2023
Time: 9.30am to 11am
Location: MS Teams dial in
Agenda
| Agenda item | Owner | |
|---|---|---|
| 09:30 | Introductions and declaration of interest | Nicola Hamilton (CHAIR) |
| 09:35 | Formal review of last minutes | Nicola Hamilton (CHAIR) |
| 09:40 | FDP Programme Overview | FDP Programme Director, Head of Communication (FDP) |
| 10:00 | Break | All |
| 10:15 |
Continued - A discussion regarding plans for large-scale PPIE including the topics to be covered, methods of engagement, and process for engaging with the group ahead of PPIE activity |
DHSC Stakeholder and Public Engagement Lead |
| 10:45 | Terms of reference final review | DHSC Stakeholder and Public Engagement Lead |
| 10:55 | Any other business | Nicola Hamilton (CHAIR) |
Attendees
| Attendees | Organisation/department |
|---|---|
|
Nicola Hamilton (CHAIR) |
Understanding Patient Data |
| Eileen Phillips | National Data Guardian |
| Matt Howard-Murray |
Association of Medical Research Charities / Cancer Research UK |
| Lay member | Independent member |
| Lay member | Independent member |
| Lay member | Independent member |
| Lay member | Independent member |
| Lay member | Independent member |
|
Head of Communication and Engagement FDP |
NHS England |
| Stakeholder and Public Engagement Lead | DHSC |
| PMO Communications FDP (note taker) |
NHS North of England CSU |
| Apologies | Organisation/department |
|---|---|
| Lay member | Independent member |
| Lay member | Independent member |
| Head of Communication and Engagement (GPDPR) |
NHS England |
| Communications Manager |
NHS England |
| Delivery Lead |
NHS England |
Agenda items/minutes/action notes
Introductions and declaration of interest
Panel members were welcomed to the meeting by the Chair, who also ran through the agenda.
No declaration of interests declared.
Formal noting of previous meeting's action notes
The action notes from 26 October 2023 meeting were approved for publication.
FDP Programme Overview
The Head of Communications for the Federated Data Platform (FDP) presented the panel with an overview of the FDP Programme:
- The NHS uses data every day to manage patient care and plan services. Historically, it’s been held in different systems that don’t speak to each other creating burden for staff and delays to patient care.
- The federated data platform is software that will sit across existing systems and connect them.
- The FDP is not a data collection. It simply allows for better use of existing sets of NHS data that clinicians use when providing routine care.
- The federation aspect means that every trust, and ICB will have access to their own version of the data platform, which they will have complete control over.
- Each NHS organisation will be the data controller for their federated platform and will make decisions about how their local data is used.
- The federated data platform will remove the need to cross reference spreadsheets and paper-based records improve our ability to keep patient information safe.
- NHS England has run a fair and transparent procurement process, supported by over 30 individuals with a wide range of backgrounds.
- The software supplier will not hold or have access to NHS data for any purpose other than as explicitly directed by the NHS.
The panel suggested recording a patient to talk through the process in simple terms which could be used alongside the case studies. It was agreed this would be explore as an idea.
A discussion regarding plans for large-scale PPIE
The panel were informed that once the supplier has been awarded, there will be a better understanding of the methods of engagement required.
A draft version of the data pact is currently being worked on with focus groups with Patients' Association. It will be published after deliberations have been completed.
A transparency statement is also being worked on and will be presented at public engagement sessions. This will be discussed and further deliberated on to result in a final version.
Standards for public engagement is important as the public will inform us of when we should be engaging.
The panel were informed that the large scale public deliberation will include high level principles and options for reforming the National Data Opt Out (NDOO).
The panel had a discussion and the DHSC Stakeholder and Public Engagement Lead will take all comments and suggestions on board.
Terms of reference final review
The revised Terms of Reference (ToR) for the group were presented and the panel requested 2 small changes. The NHS team agreed to update the ToR and publish on the new webpages.
Any other business
The panel requested the following agenda items for the next meeting:
- An update on new members
- FDP programme update
- GPDPR programme update
- Review the expanded length of meeting