Steering group minutes - March 2024

Date: 27 March 2024

Time: 10:00-12:00

Location: MS Teams

Chair: Dr Nicola Byrne, National Data Guardian

Attendees

ABHI – Andrew Davies
ABPI – James Squires
AMRC – Nicola Perrin
Involve – Sarah Castell
Local Government Association – Philippa Lynch
National Data Guardian Panel- Jenny Westaway
Patients Association – Rachel Power
Understanding Patient Data – Nicola Hamilton
URSUS Consulting – Anna Macgillivray, Hilary Livesey
Thinks Insight and Strategy
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)
Stakeholder and Public Engagement Lead, JDPU

Actions

Action 1: DHSC to amend Terms of Reference according to feedback and recirculate.

Action 2: One Steering Group member was happy to have further discussions on case studies around benefits/value/commercial models.

Action 3: Another Steering Group member to connect the project team with speakers from the University of Manchester on their work around data and trust.

Action 4: The project team to consider how much input the independent evaluator should have with engagement with seldom heard groups.

Minutes

Item 1: Introductions, apologies and conflicts of interest

Dr Nicola Byrne, National Data Guardian, welcomed members to the first meeting of the Steering Group for Large-Scale Public Engagement.

Apologies were made on behalf of Jacob Lant (National Voices) and Louis Holmes (Care England).

No conflicts of interest were raised by members.

Item 2: Scene setting and terms of reference, DHSC

The Stakeholder and Public Engagement Lead facilitated this item.

They started by providing a background to the large-scale engagement programme:

• The Data Saves Lives Strategy was published in June 2022 Chapter 1 commitments were focused on building public trust.
• £2 million of funding was allocated to deliver large scale public engagement, which will cover trust products and in-progress, high-profile data policies and programmes.
• This was announced in September 2023 and will be concluded by March 2025.

They then described the rationale behind assembling this steering group. The engagement team have previously engaged with Patient and Public Engagement and Communications Advisory Panel, and Data Strategy Advisory Panel (DSAP), however we wanted to build a Steering Group to provide specific, informed, timely, independent advice to support delivery of this engagement programme.

The Steering Group will meet at least twice ahead of each cohort and once following the delivery of each cohort. The role of members would include:

• reviewing and feedback on content and design, attending event as an expert/specialist
• reviewing reports and outputs, ensuring they align with organisation and intended language for example
• an independent evaluator will report into the steering group - providing oversight and advice on the progress of the programme

The steering group is to be an 'independent and critical friend' to the programme.

Steering group members gave useful feedback on draft Terms of Reference.

Action 1: DHSC to amend Terms of Reference according to feedback and recirculate.

Item 3: Design process

Thinks Insight and Strategy facilitated this item.

Thinks presented an overview of the planned engagement design. It was explained that the chosen methodology and overall structure of the whole project would consist of 3 cohorts over 3 tiers. The tiers were summarised as:

1. Core deliberation, 120 people, 4 locations, 3 sessions
2. Inclusive engagement, 100 people, meet them where they are, 1 session
3. Polling, 1000 people nationally representative sample

Steering Group members emphasised the importance of inclusive engagement across Tier 1 and Tier 2. There was interest from the group in seeing the proposed approach in more detail.

Questions from members focused on how outcomes of this work will influence policy, and how they will be measurable. DHSC emphasised that the project team is working closely with policy leads in departments to ensure the design process and engagement programme leads to outputs that are useful, meaningful and actionable.

Item 4: Intended outputs

Thinks Insight and Strategy described the different intended outputs across the three tiers of engagement and how they were complementary and additive to derive informed qualitative and quantitative outputs.

The Steering Group acknowledged the challenge of ensuring these deliberations build on existing knowledge rather than duplicating it and suggested bringing existing principles and draft documents (e.g., data pact) into the conversation. The engagement should try to reach as much specificity as possible with the public to ensure outputs are actionable for DHSC and NHSE.

One Steering Group member highlighted that the Welsh Government was conducting deliberations on how comfortable people would be with recruitment processes for research that access patient data without prior consent. Thinks Insight responded that the project team is aware of the project.

Action 2: One Steering Group member was happy to have further discussions on case studies around benefits/value/commercial models.

Action 3: Another Steering Group member to connect the project team with speakers from the University of Manchester on their work around data and trust.

Item 5: Discussion on key questions

Thinks Insight facilitated this discussion.

The project team highlighted their intent to use this discussion to hear key elements that the Steering Group thought the engagement should cover with the public. Example topics included:

• priority topics to cover with the public
• what should be include in engagement
• potential outputs
• any specific case studies, content or experts to be included

Steering Group members highlighted previous healthcare engagement with the public as these could be useful to learn from. They also queried how specific the final outputs would be at the end of the engagement programme.

Item 6: Future Steering Group involvement, DHSC

The Stakeholder and Public Engagement Lead facilitated this item.

The discussion outlined where the Steering Group will be involved in the future, and what they would have influence over. There would be regular meetings over the course of the engagement, the group would have sight of design and content materials as they were being developed, and could provide feedback.

There would be a session on specific policy areas, before the next steering group session.

Item 7: Independent evaluation, Thinks and Ursus Consulting

Thinks Insight facilitated this item.

The ways of working between the independent evaluator, Thinks and DHSC were still to be defined, but the overall aim will be to deliver genuine independent oversight. There was agreement that the evaluator did not need to be embedded into programme team.

The evaluator would be attending the Steering Group with some input, and would observe as many events as possible, alongside getting participant feedback.

Action 4: The project team to consider how much input the independent evaluator should have with engagement with seldom heard groups.

Item 8: Wrap up and AOB

Dr Nicola Byrne facilitated this item.

It was explained that the next Steering Group session would involve Thinks team sharing draft discussion guide to get the group’s thoughts on.

One Steering Group member requested any materials for sharing more widely share with the group’s organisations. DHSC replied that they would circulate public facing material.