Steering group minutes - September 2025

Date: 8 September 2025

Time: 10:00-12:00

Location: MS Teams

Chair: Dr Nicola Byrne, National Data Guardian

Attendees

Dr Nicola Byrne (Chair) - National Data Guardian

Jenny Westaway - National Data Guardian Panel Member

Richard Ayres- Care England

Anna Steere - Understanding Patient Data

Chris Carrigan – Use My Data

James Squires - Association of the British Pharmaceutical Industry (ABPI)

Sam Smith - MedConfidential

Mark Coley - British Medical Association

Alice Lambert – Royal College of General Practitioners (RCGP)

Louise Greenrod, Deputy Director - Data Policy and Digital Oversight, Joint Digital Policy Unit (JDPU), NHS England Transformation Directorate

Head of Data Strategy, JDPU

Head of Data Access and Public Engagement, JDPU

Public Engagement Strategy and Project Management Lead, JDPU

Public Engagement Design Lead, JDPU

Senior Policy Advisor - Public Engagement, JDPU

Data Policy Lead, JDPU

Senior Policy Advisor – Data Policy, JDPU

Thinks Insight

Ursus Consulting

Minutes

Item 1: Welcome and introductions

The chair welcomed members to the meeting.

Apologies were made on behalf of Nicola Perrin (AMRC) and Philippa Lynch (Local Government Association)

The chair gave members the opportunity to comment on the updated terms of reference. No comments were made so the new terms of reference were confirmed.

No conflicts of interest were raised by members.

Item 2 - Final review of exam and policy questions

Thinks Insight and Strategy facilitated this agenda item.

Members were presented with a final draft of the exam and policy questions to be used for cohort 4. These had been developed following their previous feedback.

Questions and feedback from Steering Group members included:

• Minor amendments to the wording in order to make it more accessible for participants.
• Suggestions regarding which information about data linking would be most important for participants, including safeguards and technological detail.
• A suggestion regarding which use cases might be best to draw out opinions about the different purposes of data linking, including where it could be contentious.

Item 3 – Tier 1 Outline

Thinks Insight and Strategy facilitated this agenda item.

Members were presented with the outline structure of the Tier 1 workshops. This included final dates, times, format and suggested sessions for each workshop. The outline had been developed following Steering Group feedback on a previous draft.

No questions or comments were raised by Steering Group members.

Item 4 – Case Studies

Thinks Insight and Strategy facilitated this agenda item.

Members were presented with initial plans for the use of case studies within cohort 4, and a short summary of each. Scoping work had been combined with the findings from the preliminary engagement work conducted by Define. Members were moved into breakout rooms to give detailed feedback on the case studies.

Questions and feedback from Steering Group members included:

• Support for contentious case studies to be framed carefully to avoid participants going off topic.
• The case studies should aim to draw out which actors are most trusted by the public in the context of data linking.
• Each use case should clearly display the public benefit of linking data.
• Several members suggested additional topics that would be interesting to investigate through case studies. These included re-identification, and where there is an obvious public benefit.
• The case studies should draw out participant views about re-identification and individual interventions, including when this is acceptable or controversial.

Item 5 – Tier 3 Survey

Thinks Insight and Strategy facilitated this agenda item.

For Cohort 4, the survey would take place before Tiers 1 and 2 to gather baseline views on data linking, and inform the design of other tiers.

Members were talked through the draft Tier 3 Quantitative Survey, then moved into breakout rooms to feedback in detail.

Questions and feedback from Steering Group members included:

• Support for the case studies to encompass a range of scenarios, included more nuanced cases. This can test acceptability and demonstrate the public’s priorities.
• A suggestion that the project team should ensure the case studies included in the survey can be translated into real life scenarios and keep a focus on health data.
• A recommendation that survey participants were encouraged to take breaks after each section, this would support the survey’s accessibility.
• A suggestion to be cautious about any use cases that might impact children’s data.
• The survey should be very clear regarding what data could be linked and for what purposes as this can sometimes be complex.

Item 6 - AOB and closing

The chair facilitated this agenda item.

The chair thanked members for their contributions and closed the meeting.