Steering group minutes - January 2025

Date: 15 January 2025

Time: 10:00-12:00

Location: MS Teams

Chair: Dr Nicola Byrne, National Data Guardian

Attendees

Jenny Westaway - National Data Guardian Panel Member

Jacob Lant - National Voices

Chris Carrigan - UseMyData

Philippa Lynch - Local Government Association

Nicola Perrin - Association of Medical Research Charities (AMRC)

Rachel Power - Patients Association

Emma Morgan- Understanding Patient Data

Andrew Davies - Association of British HealthTech Industries (ABHI)

Sarah Castell - Involve

Dr Imran Khan - Royal College of General Practitioners

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, 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 apologies

The chair welcomed members to the meeting.

Apologies were made on behalf of Richard Ayres (Care England), Matt Hennessy (NHS Greater Manchester) and James Squires (ABPI). Emma Morgan was welcomed to the meeting as the temporary representative of Understanding Patient Data.

No conflicts of interest were raised by members.

Item 2: Reflection on previous feedback

Thinks Insight facilitated this agenda item.

Steering Group members were talked through examples of where their previous feedback had been actioned during the design of cohort 3. Specifically:

• The problem statement was amended to acknowledge the complex nature of opt out, and to reframe the benefits as wider than had been previously presented.
• Discussion to introduce the topic of health and care data would take place earlier.
• The inclusion of framing around balancing individual choice and wider benefits.
• Ensuring that participants were clear on the scope of the deliberations.

No questions were raised by members.

Item 3: Tier 1 - Discussion guides and overall flow

Thinks Insight facilitated this agenda item.

Steering group members were talked through the overall flow of the workshops in tier 1 and the first draft of the discussion guides. Steering Group members were split into two breakout rooms to discuss the flow and ordering of discussion points. Feedback included:

• The sessions should be dynamic to keep participants engaged.
• There should be opportunities from the beginning for participants to share their opinions.
• Participants should be able to talk about issues relating to trust, and the current situation with the NHSE.
• Wider context around health and social care data should be introduced before the topic of opt out.
• The project team should consider how they present the various complex points into the topic without it being overbearing.

Item 4: Provision of participant information

Thinks Insight facilitated this agenda item.

Members were presented with all the information that would be given to participants during the first three workshops. The information would include context of the health and social care system, the opt out landscape, data uses and case studies.

Members were split into breakout rooms to discuss the levels of information, when complexity would be introduced, and which perspectives should be presented.

Feedback included:

• Participants should be provided with a history of the opt out,
• The design team should explain the opt out in a visual and imaginative way,
• Participants should discuss wider uses of data to contextualise the discussion,
• Identification of data should be covered early in the deliberations,
• There should be a balance in perspectives covered, and space made for alternative views, and
• The deliberations should discuss the various mechanisms for opt out.

Item 5: Participant deliberation

Thinks Insight facilitated this agenda item.

Members were introduced to the draft sub-questions, and cross-cutting issues that would be deliberated by participants. The breakout rooms discussed whether these were the right questions to explore, what could be added or removed, and which should be prioritised.

Feedback included:

• Members were generally comfortable with the themes that would be discussed with participants.
• Participants should be fully aware of the wider context around opt out, this will ensure all recommendations are grounded in reality.
• Granularity was an important theme to discuss, especially for deliberation on uses and users. Participants will have views about who can access data.
• It would be useful for participants to consider what opting back in could look like.

Item 6: Recommendation forming

Thinks Insight facilitated this agenda item.

Steering Group members were presented with an overview of how the workshops would move from deliberation to recommendation forming. This would occur following workshop 3.

Members went to breakout rooms to discuss which scenarios would be best to draw out principles for recommendations and discuss how to ensure recommendations could be practically applied.

Feedback included:

• The process of recommendation forming needed to be a thorough process, so it could not be criticised.
• Participants might be interested in what would happen once the recommendations had been formed.
• There needed to be a conversation with participants about what could actually be applicable in NHSE.
• The recommendations should be split into national and local themes.
• The design should ensure participants are aware of exemptions to opt out rules, and circumstances where proxy decisions can be made.

Item 7: The problem statement

Thinks Insight facilitated this agenda item.

Steering Group members had previously provided feedback on the problem statement. The presentation displayed the latest draft of the statement, and took final feedback.

Feedback included:

• Most members were happy with the problem statement, a few wondered if it needed to be more provocative, or ask if the opt out should exist at all.
• The problem statement may need to be reworded to be more patient centric.
• Exemptions are important in an opt out system, these should be explicit in the framing.
• There needed to be space for more diverse views within the deliberations.

Item 8: Any other business and closing

The chair facilitated this agenda item.

Two items of AOB were raised:

• The public engagement design lead flagged the next deadline for providing feedback on the stimulus materials.
• The head of data access and public engagement reassured members that the recent government announcement on AI use did not mean any changes to public engagement delivery.

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