Steering group minutes - March 2025

Date: 5 March 2025

Time: 10:00-12:00

Location: MS Teams

Chair: Dr Nicola Byrne, National Data Guardian

Attendees

Phillipa Lynch - Local Government Association

Dr Mark Coley - British Medical Association

Matt Hennessey - NHS Greater Manchester

James Squires - Association of the British Pharmaceutical Industry

Richard Ayres - Care England

Dr Tom Nichols - Royal College of General Practitioners

Sam Smith - MedConfidential

Anna Steere - Understanding Patient Data

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

Head of Data Strategy, JDPU

Deputy Head of Communications and Engagement,
NHS Transformation Directorate

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 apologies

The chair welcomed members to the meeting.

Apologies were made on behalf of Jenny Westaway (Office of the National Data Guardian), Andrew Davies (ABHI), Rachel Power (Patients Association), Nicola Perrin (AMRC), Sarah Castell (Involve) and Imran Khan (RCGP). Dr Tom Nichols was welcomed as a deputy for Imran Khan.

No conflicts of interest were raised by members.

Item 2: Cohort 3 update

Thinks Insight facilitated this agenda item.

Members were given a short recap of Cohort 3. The first two workshops had taken place for Tier 1, both online and in person. The final three workshops would take place over the next few weeks and would move from information provision to recommendation forming.

No questions were raised by members.

Item 3: Overall reflections on Cohort 2 report

Thinks Insight facilitated this agenda item.

Members had been sent the first draft of the Cohort 2 report to review the previous week. This agenda item gave them an opportunity to raise any questions or comments that sat outside the agenda items later in the meeting.

Questions and comments from Steering Group members included:

• The difference in findings from each tier of engagement was fascinating.
• Due to the ongoing changes within the NHS in England, when the reports from this programme are published, it should be made clear what the context was when the public were being engaged.
• There would be challenges with implementing some of the recommendations from Cohort 2, as not all were compatible with current IT systems.
• One member emphasised the importance of trust in healthcare. There were significant consequences if trust was damaged at all.

Item 4: Deep dive on a single patient record

Thinks Insight facilitated this agenda item.

Steering Group members were presented with an overview of key findings on the single patient record from Cohort 2. The presentation included participants initial views on a single patient record, conditions for this record, conclusions from each tier of engagement, and how those developed into the recommendations found in the draft report.

Questions and comments from Steering Group members included:

• It was important to remember that the GP health record was one of several records that existed in the health and care system, this should be considered when framing the recommendations.
• The report needed to be clearer on how much detail participants were given on the single patient record. Thinks Insight clarified that as the public was engaged at an early point in development, participants were asked to think about key recommendations for design.
• Some Steering Group members shared literature that they believed was relevant to the findings on a single patient record.

Members discussed regional and national work that was linked to the findings from the report. They also considered how the recommendations could fit with the current system of GP health.

Item 5: Deep dive on GP data for secondary purposes

Thinks Insight facilitated this agenda item.

Steering Group members were presented with the findings on the secondary uses of GP data. The presentation initially discussed views on the sensitivity of GP health record data and participants’ reactions to the using this data for secondary uses. It then summarised the conclusions and recommendations on this topic.

Questions and comments from Steering Group members included:

• The report could be more detailed regarding what worried participants about using GP health record data for secondary uses.
• There was a request for the report to explain the scope of the discussion, as there were different ways of interpreting the term "secondary uses".
• The report should accurately reflect what the guest speakers presented to participants during sessions on secondary uses of data.
• The report should be checked to ensure it was very clear on what was covered by the terms used, especially regarding the terms "decision making" and "controllership".

Item 6 – Report publication next steps

The Deputy Head of Communications and Engagement facilitated this agenda item.

It was confirmed that the Cohort 1 report was planned to be published soon. The publishing delays had been due to internal processes, there were no concerns about the content of the report.

There would be some social media posts to publicise this event, but Steering Group members would be alerted when a full plan was in place.

Item 7 - AOB and closing

The chair facilitated this agenda item.

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