Steering group minutes - October 2024

Date: 9 October 2024

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

Chris Carrigan - UseMyData

Philippa Lynch - Local Government Association

Nicola Perrin - Association of Medical Research Charities (AMRC)

Rachel Power - Patients Association

Nicola Hamilton - Understanding Patient Data

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

Andrew Davies - Association of British HealthTech Industries (ABHI)

Sarah Castell - Involve

Matt Hennessey - NHS Greater Manchester

Sam Smith - MedConfidential

Mark Coley - British Medical Association

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

Head of Data Strategy

Communications Manager (NHS Transformation Directorate)

Deputy Head of Communications and Engagement (NHS Transformation Directorate)

Senior Policy Advisor

NHSE SDE Network Delivery Lead

Minutes

Item 1: Apologies, conflict of interest

Dr Nicola Byrne welcomed everyone to the meeting

Apologies were made on behalf of Jacob Lant from National Voices. Mark Coley was welcomed as the representative of the British Medical Association

No conflicts of interests were reported by members.

Item 2: Tier 1 design - overall feedback

Thinks Insight facilitated this agenda item.

Thinks presented an overview of the latest outline of the Tier 1 workshops for Cohort 2 and opened the floor for overall feedback.

Steering Group members raised many questions and observations around how this programme of engagement is adapting to the recent announcements of the 10-year plan, and single patient record. Specific queries involved:

• how explicit the engagement should be about supporting the government’s healthcare announcements.
• the need to pivot this work away from the ambitions of a previous government, and towards the new government. Otherwise, it could look unaligned.
• the need to align this work with the 10-year plan. The project team answered that they were linked with the 10-year plan, and in discussions about the alignment of both workstreams.
• the potential for Cohort 2 of engagement to look at two specific areas. These could be public support and co-design of a single patient record, and the use of the GP health record for secondary purposes.
• the need to ensure alignment with the programmes of regional engagement. The project team responded that they were very closely linked with the engagement leads from each region to ensure this was the case, and a co-design workshop was planned for the coming weeks.

Specific points to include in the Tier 1 workshops included:

• consent, as participants need to know exactly what they can and can’t do with the GP health record.
• who participants would be comfortable seeing their whole healthcare record, and what secondary uses they would be comfortable with.
• data controllership, the current system and why it may need to change.
• background information on information governance.
• potential risks and concerns.
• ensuring the case studies go beyond direct care.

Item 3: Tier 1 design - problem statements

Thinks Insight facilitated this agenda item.

Thinks outlined the draft problem statement for Cohort 2. Steering Group members were asked for their feedback.

There was a significant amount of feedback, points made included:

• the need for the language to be centred in reality, rather than giving participants the incorrect impression of what NHSE can do.
• the engagement should consider the needs of different actors in the NHS, including clinicians and researchers.
• the research should be clear with participants about the levels of identifiability in NHS data, and how this relates to risk.
• the public should be engaged upon holistic care and benefits to patients, as individual care is the priority. So, the problem statement should be more focused on the public.
• the public need to be educated on the legislation surrounding health and social care data, and the impacts change might have on that particular aspect.
• participants should be clear on which design elements of the single patient record they can influence.

Item 4: Tier 1 design - case studies

Thinks Insight facilitated this agenda item.

Steering Group members were introduced to the criteria for case studies. Attendees were split into two breakout rooms to discuss the case studies, before coming back to the main room to feedback.

Many comments were based around the language used in the case studies, and the need to ensure that the case studies were grounded in factually correct experiences of the NHS. Some members thought the case studies should show more examples of how data can be linked for other purposes (such as research, consented cohorts, clinical trial invitations or planning).

Several members commented that the case studies would need to be representative of the government’s current healthcare aims and political context, which could be difficult as announcements are made quickly.

Some members were keen to show the various types of data available to be linked, and the current landscape of decision making in relation to the GP health record, including GP practices joining data sharing schemes. However, the legal challenges would need to be featured to show how GPs must comply with legal requirements.

Item 5: Tier 1 design - speakers

Thinks Insight facilitated this agenda item.

Attendees were talked through a slide which showed the suggested speakers for workshops 1 and 2. Members were asked for their feedback on the suggestions, especially if it would ensure representation of the spectrum of perspectives. Key points included:

• the need to get speakers from the GP profession that represent a variety of perspectives, including GPs sceptical about proposals for change.
• there should be some external speakers who are not linked with NHSE or DHSC, and potential conflicts of interest should be declared. Thinks responded that the project team would make any conflicts clear to participants.
• the perspectives of patients and the public should be conveyed to participants.

Item 6: AOB and close

Dr Nicola Byrne facilitated this agenda item.

The communications manager gave an updated on the final report for Cohort 1. NHSE and DHSC confirmed their aim to publish the report in around October or November.

There was also an update on the discussion guides and stimulus packs for Cohort 2 Tier 1, and a reminder of the timelines for feedback.

The chair thanked all attendees for their contributions and closed the meeting.