Large-scale public engagement - Steering group terms of reference

Background

Public confidence is critical to ensuring the successful delivery of data and digital transformation.

In 2022, £1.5 million was allocated by Data for Research and Development to deliver on Data Saves Lives public engagement commitments until March 2025. To fulfil these commitments, three cohorts of public engagement were carried out across 2024 and 2025. In July 2025 the programme was extended into 2025-26 to deliver a fourth cohort.

NHS England and the Department of Health and Social Care (DHSC) procured an external supplier with the skills, experience and expertise to deliver a comprehensive programme of engagement.

In early February 2024, the contract was signed between NHS England and the successful supplier for the large-scale engagement programme. NHS England are pleased to be partnering with Thinks Insight and Strategy to deliver this work. We have extended the existing contract with Thinks Insight and Strategy to deliver the fourth cohort of engagement too.

This funding was allocated to on a programme of large-scale public engagement, primarily consisting of deliberations, focussed on the development of products committed to in the data strategy and utilise in-progress, high profile data policies and programmes as use cases, as recommended by scoping work.

To ensure a broad range of perspectives and expertise outside of NHSE and DHSC are able to contribute to this programme this expert steering group was established.

This document is the Terms of Reference for the expert steering group. Minutes from the meetings are published on the Transformation Directorate webpages.

Objectives of this work

Objectives include:

• improvement of public confidence in the use of data, in line with the vision outlined in Data Saves Lives and the NHS 10 Year Plan
• improved policy development and success through the creation of robust recommendations that teams can use in future policy development

To deliver these, the programme will need to ensure it is:

• achieving the gold standard of public engagement, following best practice for all methodology
• involving diverse cohorts of participants using the most representative recruitment methods

Role

The role of the steering group is to advise on the design and delivery of the four phases of the programme. The steering group will be asked to review plans during design phases, primarily the structure and content of the three tiers of work. The minutes will reflect where there has been both agreement and any disagreement between members during discussions.

Members are expected to:

• act as a critical friend to the programme, throughout design and delivery - the minutes will reflect any disagreement between members on elements of programme design and delivery
• support DHSC and NHSE to deliver this public engagement programme, in line with the vision in Data Saves Lives and the NHS 10 Year Health Plan
• engage with the pre-reading materials circulated in advance of meetings, and bring diverse views and perspectives to all aspects of programme planning and delivery
• ensure contributions are balanced and constructive - aiming to identify positive actions and outline wider stakeholder benefits, as well as raising issues or concerns
• maintain a secure, open, honest, and collaborative environment
• bring intelligence from their own organisations, where applicable, to support the development and delivery of this programme
• disseminate and promote the project findings through their own networks once delivered

Design input includes:

• help to scope the questions and topics to be explored through engagement with the public, as well as providing guidance in terms of structure, sequencing and achievability
• review and feedback on content, including but not limited to the discussion guides and stimulus material
• providing input and advice on the appropriate specialists needed to attend deliberative events, to provide expertise and a range of perspectives

Output review includes:

• review and feedback on the public reports and summary reports throughout the programme, for each phase of work
• review and feedback on the final synthesis report produced at the end of the programme
• providing advice to support DHSC and NHSE to ensure that outputs speak to our objectives, and are written in such a way that will land with relevant audiences, including accessibility considerations where necessary
• providing initial guidance and direction on taking policy recommendations forwards, recognising that use of findings will build public trust

Independent evaluation includes reviewing the reports of an independent evaluator who observes and assesses the process throughout the life of the programme and will provide a final report. This independent evaluator reports into the steering group to ensure that their assessment is as independent as possible. The independent evaluator will provide an update and reflections during a dedicated agenda item at certain steering group meetings. The final independent evaluation report will reflect the input of the steering group throughout the process.

General overview and advice includes providing overarching oversight and advice on the progress of the programme, including supporting the project team to manage risks to the project. This also requires members to raise any concerns or challenges they have about the programme during the meetings, directly with the Chair, or with the independent evaluator.

Not in scope

The steering group’s role is advisory. It does not have a decision-making function. Whilst the group will be asked to comment and advise on key activities and outputs, decision-making ultimately rests with the DHSC Data and Information Governance Policy Team in the DHSC/NHS England Joint Digital Policy Unit and Thinks Insight and Strategy.

The primary focus of this steering group is to ensure that public engagement is delivered effectively and produces constructive and useful recommendations for policy moving forward. The steering group will need to discuss how best to engage the public on the policies and programmes involved in this work, but detailed discussions on policy development should occur in other forums, such as the Data Strategy Advisory Panel.

Register of interest

The secretariat to the group will maintain a register of interests. The Chair should ascertain, at the beginning of each meeting, the existence of any conflicts of interest relating to matters on the agenda. These will be recorded in minutes accordingly.

Operational arrangements

The meeting will be Chaired by Dr Nicola Byrne, National Data Guardian.

The DHSC Data Policy team and Thinks Insight and Strategy will provide the secretariat, with Thinks minuting the meetings.

The group should report their recommendations and feedback to the chair. The chair will report back on any decisions made related to the work of the group.

The meetings will be scheduled according to the project timeline. The steering group meets at least twice during each design phase for each of the four phases of work, and at least once following the production of outputs from each phase.

An additional 1 hour in advance of meetings will be required outside of the meeting to review documentation and materials.

Members will be expected to attend as many meetings as possible and should ensure that the secretariat is made aware if they are unable to attend. Members are encouraged to nominate a suitable deputy if they cannot attend.

The chair may request additional steers by email from the group outside of the regular meeting times, if there is an urgent need.

The group will be disbanded following the delivery of the final report in Spring 2026.

Other governance forums

This steering group is the main forum for advising on the public deliberation programme.

We currently engage regularly with these forums:

Health Data Patient and Public Engagement and Communications Advisory Panel (PPECAP) is a group consisting of patient and professional representatives, with an interest in patient data. They provide working level advice on discrete engagement design and communications content. The project team will engage PPECAP separately and will be clear where their input has shaped thinking.

Data Strategy Advisory Panel is an independent stakeholder advisory group providing advice, challenge and co-design on data policy. DSAP has provided the programme with a more strategic, external perspective with the benefit of knowledge of the topic areas and history of the data space. We will be using the steering group to shape engagement rather than DSAP from the steering group inception meeting onwards.

Membership