Agenda
Time | Agenda item | Owner | Organisation |
---|---|---|---|
9:30am | Introductions | Chair | National Data Guardian |
9:35am | Patient association – a guide to Palantir’s Foundry | Chief Executive) | The Patients Association |
10:05am | Break | ||
10:20am | PPV Partner Involvement Team | Senior Participation Manager | NHS England |
11:00am | Secure Data Environments and Research for R&D | Senior Communications Business Partner and Senior Policy, Strategy and Engagement Advisor in Data for R&D | NHS England |
11:25am | Any other Business | Chair | National Data Guardian |
Invitees
- Chair: National Data Guardian (Chair)
- Senior Policy Advisor: DHSC
- Panel Member: Lay member
- Panel Member: Lay member
- Panel Member: Lay member
- FDP Communication Lead: NHS England
- Project Manager: NHS England
- Panel Member: Lay member
- Chief Executive of The Patients Association: The Patients Association
- Senior Participation Manager: NHS England
- Senior Communications Business Partner: NHS England
- Project Support Officer: NHS England
Apologies
- Panel Member: Lay member
Meeting notes
Agenda item 1 – Introductions
Panel members were welcomed to the meeting by the Chair, who ran through the agenda.
No conflicts of interest were raised by members.
Agenda item 2 – Patient association – a guide to Palantir’s Foundry
The Chief Executive introduced the Patients Association and the work they had been doing with DHSC and NHSE more generally, alongside their collaboration with Palantir and members of the public to produce a guide to explain how the NHS will use Palantir’s Foundry software.
The Chief Executive explained the methodology and sample of patients used for this piece of work. For this specific work, the sample was made up of people interested in the use of data in health and social care.
Patients involved in developing the guide had considered the information that Palantir had provided, what they wanted to know, and what topics they wanted to have more information about (including security and healthcare inequalities). This was an in depth and iterative process, from which resulted a full guide, a summary guide and an animation to inform people about the NHS’s planned use of Foundry.
Agenda item 3 – Patient and Public Voice Partner Involvement team
The Senior Participation Manager introduced themselves, the Equalities and Involvement team and their scope of responsibilities.
The Senior Participation Manager set out that there was a separate team that was involved in the logistics and support (e.g. looking at how partners are paid). The team lead would come to a future PPECAP meeting.
The role of patient and public voice (PPV) partners was summarised, and the rationale given for involving them in NHSE work. Senior Participation Manager explained the history behind the policies for PPV partners, and rationale for recent changes.
There was going to be one PPV partner policy for NHSE which would include all sorts of partners and types of engagement. The changes would include a simplified renumeration system.
PPECAP group members made comments and asked questions:
- One member came in to say that previous calls for PPV partners did not include specific samples based on race or ethnicity.
- The previous process had been very lengthy and complex. This could be exclusionary as it was based on people’s ability to fill out long forms and pass interviews.
- The current process for paying PPECAP members means that, for payment purposes only, they are classified as casual employees of NHSE. When the Senior Participation Manager mentioned that NHS staff cannot sit on PPV groups, PPECAP members became concerned that this meant they would not be able to sit on other committees as PPV partners. However, the situation with PPECAP members is simply a quirk of the renumeration system, and there are some legacy system issues that needed to be updated; Senior Participation Manager agreed that some situations need to be considered on a case-by-case basis.
- A panel member asked whether once the policy had been updated, whether it would stay stable for a long period of time? One PPECAP member said they’d experienced many changes since joining in 2020, and it was very stressful. It was explained that no further changes were anticipated, and the policy would be reviewed after 5 years.
- It was raised that the new EASY payment system that PPECAP members use to get paid for their time was not very simple to use, and some members had chosen to go back to using a manual system. Senior Participation Manager explained that the system was very transparent, and they’d worked on it based on PPV partner feedback that they needed more clarity when claiming a payment.
- The travel element of the role risked excluding people and meant people were limited from applying for the role. There should be more meetings across other regions and specific locations were suggested.
- PPV partners felt most valued when it was made clear that their voices were listened to, and they were not just engaged with as a tick box exercise.
- It helped when there was a feedback loop so people could see how their input was acted upon. NHSE were trying to improve this through an updated policy and making sure the feedback loop was functioning through a ‘you said we did’ process.
Senior Participation Manager explained the updates to the PPV partner policy, including who could and couldn’t be a partner. This would ensure there was a diversity of views and mitigate exclusion.
It was explained that PPV partners will now be paid through payroll. PPECAP members were told that a HR colleague will come to a future meeting to talk through the new payment systems and answer people’s questions.
NHS England had commissioned an outside organisation called Starting Point to support PPV partners to mitigate any digital exclusion to PPV partners experienced. They are also looking to commission a change advisory board to support potential PPV partners who might need initial support when applying to be involved. There was also a network for PPV partners which Senior Participation Manager would provide more information on.
Action:
Senior Participation Manager to send over the support offer for PPV members and contact details for members to use if they required support.
Agenda item 4 – Secure data environments and research for research and development
Senior Communications Business Partner and Senior Policy, Strategy and Engagement Advisor in Data for R&D introduced themselves and their work. Their presentation focused on the comms and engagement under the Data for Research and Development Programme.
The presentation set out:
- The programme background
- The mandate for change and mission for the programme
- The importance of comms and public engagement at both a national and regional level
- How the programme would improve research both nationally and regionally
There was a specific description of the work on comms and engagement. This included the Powered by Data campaign, content targeting researchers on social media, testimonials and articles online (including LinkedIn and X).
Questions and comments from members included:
- Postage delays are causing issues for research, as participants don’t know where they are with applications. (This was a general comment, and not related to the work of this programme.)
- The programme was asked if it was working with the Health Research Authority (HRA). They explained they are working closely with the HRA and met with them a lot, this would be included in future slides.
Senior Communications Business Partner and Senior Policy, Strategy and Engagement Advisor in Data for R&D shared the following link and email address:
Website link: digital.nhs.uk/data-and-information/research-powered-by-data
Email Address: data.healthresearch@nhs.net. Contact email address for more updates about the Data for Research and Development programme
Agenda item 5 – Any other business (AOB)
DHSC gave an update on the future of NHS England’s large-scale public engagement programme, which has been approved to recommence by the new government administration.
Timesheets and payments
The PMO Team informed the panel that ‘guidance documents and step by step process to register on EASY System’ will be circulated immediately after the meeting.
The panel members were reminded that the deadline for payroll for September timesheets is 3rd October 2024.
The new Project Support Officer was welcomed to the meeting. The new Project Support Officer will be taking over from the previous Support, providing secretariat for PPEP from October 2024. Project Manager was thanked for his time supporting PPECAP and its members and wished well for his new role.
The chair closed the meeting.
The next PPECAP meeting is Thursday 10 October 2024.