Steering group minutes - July 2024

Date: 24 July 2024

Time: 10:00-12:00

Location: MS Teams

Chair: Dr Nicola Byrne, National Data Guardian

Attendees

ABPI – James Squires
Local Government Association – Marie Horton (deputising for Philippa Lynch)
AMRC – Nicola Perrin
Care England – Richard Ayres
Involve – Sarah Castell
National Data Guardian Panel Member – Jenny Westaway
RCGP – Adrian Hayter
Med Confidential – Sam Smith
Understanding Patient Data – Nicola Hamilton
Ursus Consulting – Anna MacGillivray
Use My Data – Chris Carrigan
Louise Greenrod, Deputy Director - Data Policy and Digital Oversight, Joint Digital Policy Unit (JDPU), NHS England Transformation Directorate
Head of Data Access and Public Engagement, JDPU
Communications Manager (NHS Transformation Directorate)
Deputy Head of Communications and Engagement (NHS Transformation Directorate)
Senior Policy Advisor, JDPU
NHSE SDE Network Delivery Lead

Minutes

Item 1: Apologies, conflict of interest

The Chair welcomed members to the meeting.

Apologies were made on behalf of Phillipa Lynch (Local Government Association), Marie Horton was welcomed as her deputy.

No conflicts of interest were raised by members.

Item 2: Clearing minutes

The senior policy advisor facilitated this agenda item.

It was explained to members that DHSC and NHSE were committed to publishing the terms of reference and minutes for the Steering Group. As the pre-election period had concluded this was now possible. Revised minutes had been circulated prior to the meeting with formatting and minor textual changes.

Steering Group members were given an opportunity to raise any further issues with the minutes, if none were raised by the deadline they would be considered cleared for publication. No changes were recommended in the meeting.

Item 3: Cohort 1 report

Thinks Insight facilitated this item.

Thinks presented an overview of Cohort 1. This included a reminder of the methodology, sample, a summary of findings on trust, governance, the value of data, and the data pact, followed by a Q&A. As relevant experts, Steering Group members were asked to provide feedback on the findings. Specifically, on the quality of analysis, context setting and implications for the programme and policy development.

Members were given an opportunity to comment on the slides presented. To note: this was the first opportunity for members to review the findings, it was conducted through a high-level presentation so members could not comment on the quality of analysis. The project team committed to sharing the draft report with members for a full review in the coming weeks.

There were comments and queries from members on a variety of topics, some of these would be taken away by Thinks to inform the final report. Points made included:

1. Whether the percentages when discussing preferences were based on binary options, and what counted as a majority vote. Thinks confirmed they were based on binary options, and a majority counted as over 50% of those in the room.
2. Members complemented the graphics used in the presentation slides.
3. If there was causation or correlation between negative attitudes and negative experiences of service use. Alongside, what participants counted as a ‘scary event’ that would undermine trust in data use and what existing assumptions participants had about data ownership.
4. Members were curious regarding how much information participants had been provided with to inform the decision making.
5. A specific point was made about communicating the existence of the data pact, and what it means to the public.
6. Several points were made about the need to be careful with what language was used in the final report. Alternative wording was suggested by other members to make the final report clear.
7. It was not clear which sentences came from a participant and which were a conclusion from Cohort 1. Thinks Insight committed to ensuring this was clearer in the final report.
8. Was there a decision made to use the phrases ‘public good’ and ‘public benefit’, or were these used interchangeably? Historically, public benefit has been used over public good as it resonated more with members of the public in previous pieces of work by members of the Steering Group. But, for this presentation the terms had been used interchangeably.

Item 4: Communications update

The Deputy Head of Comms and Engagement facilitated this item.

The agenda item presented the plan for publishing the Cohort 1 report, including details on what would be published and a commitment to keep members updated with dates for sharing. We are planning social media posts and Steering Group members were welcome to share on their own channels.

Members raised questions regarding publication dates, transparency, guidance for publication, and the implications of the report for primary care providers. Members were told there was no confirmed date for publication, but they would be updated when this was available. Internal discussions were ongoing with regards to what would be published, whether this would be an executive summary or the full report.

Item 5: Independent evaluator feedback

The independent evaluator facilitated this item.

The evaluator gave an overview of their role within the public engagement. They acted as a ‘critical friend’ and asked questions to help the project; they were a neutral party who reported into the National Data Guardian and a partner from Thinks (removed from the process) regularly.

The evaluator presented feedback on what had gone well, and what could be improved from each tier of Cohort 1. They provided a summative evaluation that was based on the transcripts and notes from the events, alongside informal and formal feedback from participants.

The evaluator highlighted the diverse mix of participants, design process and facilitation of sessions as elements of engagement that went well. Whereas an overreliance on Wi-Fi to link locations and intense scheduling were aspects that could be improved upon in future cohorts.

The National Data Guardian asked if the slides could be shared after the meeting, the evaluator confirmed they could be.

Item 6: Future of the public engagement programme

The Head of Data Access and Public Engagement facilitated this item.

The progress of the programme so far and the future of the programme was discussed. The team explained that Ministers would be engaged to brief them on the programme and receive steers moving forwards.

One Steering Group member highlighted a recent white paper from DEMOS that supported continuation of the programme. This would be shared with members.

Item 7: Wrap up and AOB

No AOB were raised by members.

Dr Nicola Byrne concluded the meeting.