Steering group minutes - September 2024

Date: 11 September 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
Patients Association – Orla Fitzsimmons (deputising on behalf of Rachel Power)
Understanding Patient Data – Nicola Hamilton
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
Communications Manager (NHS Transformation Directorate)
Senior Policy Advisor, JDPU
Thinks Insight
Ursus Consulting

Minutes

Item 1: Apologies, conflict of interest

The chair welcomed members to the meeting.

Apologies were made on behalf of Sam Smith from MedConfidential, Jacob Lant from National Voices, Jenny Westaway from the Office of the National Data Guardian, Chris Carrigan from Use my Data, Rachel Power from Patients Association and Richard Ayres from Care England.

No conflicts of interest were raised by members.

Item 2: Update on the programme

The deputy director for data policy and digital oversight, and the head of data access facilitated this agenda item.

It was confirmed that ministers were happy for the engagement programme to resume following the election period. Cohort 2 will now focus on joining up primary care data and secondary data, with cohort 3 covering the opt out landscape. It was also confirmed that the next steering group meeting will focus on cohort 2 design. There will be a meeting in late October to discuss the cohort 1 report which is currently with members for their review.

One steering group member queried how a subgroup of their organisation could be involved with the programme They also suggested the programme team think more about engaging with patient groups. The team agreed to discuss this separately with the member.

Item 3: Cohort 2 – Objectives and Approach

Thinks Insight facilitated this agenda item.

Thinks displayed an overview of cohort 2. The presentation included the focus of the engagement, potential problem statements and overall structure of each day of tier 1.

Steering Group members gave feedback. Points included that in the problem statements, the team needs to ensure that language is clear and accurate as the public might not be familiar with medical or digital wording. The wording also made the problems sound technical, which was not always the case for this topic.

Steering Group members also questioned how the large-scale public engagement work was linked to the 10-year plan. The team reassured members that both project teams are coordinating with each other. Members also emphasised the broad issues that surrounded the topic of GP data, such as health inequalities and how General Practice worked.

Item 4: Breakout discussion on Workshop 1

Thinks Insight facilitated this agenda item.

Attendees were split into two breakout rooms to hold in-depth discussions on the planned content for workshop 1 of core deliberation.

Comments included:

• The possibility for social care to be included more, especially through a case study that linked GP and social care data. One member suggested that end-of-life care could be a suitable subject for a case study.
• There was a need for the deliberations to describe the types of data to participants, such as coded and free text data.
• Participants will have questions on why the system functions in its current state, and why it hasn’t been updated before. The literature review should look to analyse this.
• The engagement will need to take participants through the current system and the potential solutions, alongside the benefits and concerns they may have. This can include the different ways primary care data can be shared.

Item 5: Breakout discussion on Workshop 2

Thinks Insight facilitated this agenda item.

Attendees were split into two breakout rooms to hold in-depth discussions on the planned content for workshop 2 of core deliberation.

Comments included:

• The current picture with data flows and consented cohorts should be covered.
• There was the potential to include a use case around data for training AI models, several examples and a contact were mentioned.
• There was the potential for the deliberations to show how having a detailed and linked up picture of a person’s health data could be used to solve health inequalities. One Steering Group member offered to source examples of this.
• It was important to show that linking primary and secondary data was already common in other circumstances, such as for research. However, the deliberations should discuss awareness, and what the benefits and concerns are for different patient groups.
• It would be beneficial to get a case study on how data has been used to solve problems (i.e. to help develop a new drug).
• One Steering Group member queried how we could encourage participants to consider the social contract when thinking about linking primary and secondary care data. It could be linked heavily to the case studies.
• The Caldicott principles should be discussed, as patients may be surprised by how their data is used.

Item 6: Breakout discussion on Workshop 3

Thinks Insight facilitated this agenda item.

Attendees were split into two breakout rooms to hold in-depth discussions on the planned content for workshop 3 of core deliberation.

Comments included:

• When considering what the engagement should seek to find out, it would be useful for the engagement to assess the policy landscape, then work out which elements a public steer would be useful for. Another member thought it could be useful for gather public concerns on a national GP data set, whilst another thought tier 1 could end with general recommendations, and specific recommendations for each use case.
• The differences between how this will work nationally and regionally need to be worked out.
• The engagement needs to be embedded in a wider strategy to understand how we can deliver on participants responses.
• It would be useful to get GP views on the subjects’ participants will be discussing.
• The public need to understand who owns healthcare data, this should be made clear at the start of the deliberations but should not consume the whole discussion.
• Two Steering Group members gave examples of where data sharing does not flow well currently, these included between private and public healthcare.

Item 7: AOB

The chair facilitated this agenda item.

The senior policy advisor communicated that the programme team were reflecting on the publication of the final Cohort 1 report. They wished to know how Steering Group members wanted to be referenced.

A variety of preferences were discussed, it was decided that the meeting in late October would be used to finalise how members wished to be referenced.

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