Steering group minutes - August 2025

Date: 18 August 2025

Time: 10:00-12:00

Location: MS Teams

Chair: Dr Nicola Byrne, National Data Guardian

Attendees

ABPI – James Squires

BMA – Mark Coley

Care England – Richard Ayres

Local Government Association –Philippa Lynch

Med Confidential – Sam Smith

RCGP – Alice Lambert

Understanding Patient Data – Anna Steere

Health Data Public Panel – lay members

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

Head of Data Strategy, JDPU

Public Engagement Design Lead, JDPU

Senior Policy Lead, JDPU

Senior Policy Lead - Opt-out, JDPU

Senior Policy Advisor - Public Engagement, JDPU

Senior Policy Advisor, JDPU

Minutes

Item 1: Apologies, conflict of interest, Terms of Reference

Dr Nicola Byrne welcomed members to the meeting.

Apologies were made for Nicola Perrin (AMRC). Three new members were welcomed to the Steering Group, they were Public and Patient Voice Partners who sat on the Health Data Patient Panel.

The chair drew attention to the updated Terms of Reference which had been sent by the secretariat. Members were invited to raise any comments either in this meeting or over email, they would be signed off at the September meeting. The chair highlighted the new terms of reference had a clear procedure for members to raise any concerns about the engagement work, rather than raising these in other forums.

No conflicts of interest were raised by members.

Item 2: Cohort 3 report

Thinks Insight and Strategy facilitated this agenda item.

Thinks Insight gave an overview of the methodology and analysis used to come up with the final recommendations. Members were talked through changes to the Cohort 3 report since they had reviewed a previous draft.

Feedback from stakeholders prompted Thinks to revisit the data from Cohort 3, especially from Tier 2 inclusive engagement. Re-analysis had led to changes to the report to draw out Tier 2 recommendations, these included:

• The addition of an overall insights section, separate from the recommendations,
• More detail on tier 2 views regarding removing the opt out for planning and improving services, and
• More emphasis on how the public should be informed about opt out.

Questions and feedback from steering group members included:

• A query if a divergence of views seemed to reflect differing levels of information across the tiers? Thinks explained that this did seem to be the case as with tier 3 there were a lot more answers in the ‘I don't know’ or ‘neutral’ category.
• DHSC confirmed that the Cohort 3 report had not been amended following the government announcement of the health data research service.

Item 3: Cohort 4 context

The Head of Data Strategy facilitated this agenda item.

Members were presented with the historical and policy context surrounding linking of health and non-health data in England, as well as some detail around ambitions in this space.

Members were also talked through some preparatory work that had been conducted with a qualitative research agency to ensure the public engagement was successful. Small scale engagement had been carried out to inform how the public would be engaged upon this topic, recommendations had been related to design, topics and prompts for the public.

Questions and feedback from steering group members:

• A request for clarification around the use of identifiable and de-identified data. Current plans were for identifiable data to be linked, then de-identified.
• One member recommended going back through previous research and reports to learn from previous government failures on data linking. DHSC would also have to consider how the opt-out would interact with data from other departments.
• Several members emphasised the need to measure the impact of data linking, and acceptability of different use cases, including more controversial ones.
• The importance of governance was raised, especially following the recent Foresight AI case regarding the use of AI and health data.

Item 4: Cohort 4 overview

The Public Engagement Design Lead facilitated this agenda item.

Members were presented with an overview of how Cohort 4 could be designed, including changes to be made to the methodology. Points included:

• An overview of the locations selected for Cohort 4 Tier 1.
• The draft problem statement and policy questions which would underpin Cohort 4 fieldwork.
• The Tier 3 Quantitative Survey would now take place before the Tier 1 Core Deliberations and Tier 2 Inclusive Engagement, to give an indication of baseline knowledge about the subject.
• There would be a larger gap between the penultimate and final Tier 1 workshop. This would allow Tier 2 views to feed into the final recommendations to be deliberated on.

Questions and comments from Steering Group members included:

• A concern that the large gap during Tier 1 fieldwork may result in a large attrition rate. The project team were not concerned as participants were provided with incentives to ensure attendance continued.
• The project team should ensure that the Tier 2 views were fully incorporated into the recommendations from Cohort 4, a suggestion was made that some Tier 2 participants could join the final Tier 1 workshop to deliberate on recommendations.
• Several amendments were suggested for the problem statement, including wording changes and the addition of context for participants. The project team would use this feedback to work up a new statement and share it back with members for further suggestions.
• DHSC should consider what is a proportionate level of linkage, including risks and minimum datasets required for each potential use.
• The engagement should focus on new types of data linking, and not cover where changes would mainly be digitalising an existing process.

It would be useful to get experts who work in the wider data and privacy area to talk to participants about these uses, including international comparisons and uses of data that was not limited to health.

Item 5: Tier 2 audiences

The Public Engagement Design Lead facilitated this agenda item.

The DHSC project team explained their desire to supplement the audiences engaged within Tier 2 with some additional audiences who could be particularly impacted (or have particular concerns) with linked data. To add additional audiences, others would need to be deprioritised.

Members were asked if they agreed with the suggested approach, and for suggestions of audiences which might be particularly relevant. A few suggestions were made, but it was concluded that members could consider this outside of the meeting. The project team would distribute a proposed list of Tier 2 audiences, and members could reply with any suggestions.

Item 7 - AOB

No AOB were raised by members.

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