Steering group minutes - February 2025

Date: 5 February 2025

Time: 10:00-12:00

Location: MS Teams

Chair: Dr Nicola Byrne, National Data Guardian

Attendees

Jacob Lant - National Voices

Chris Carrigan - UseMyData

Philippa Lynch - Local Government Association

Nicola Perrin - Association of Medical Research Charities (AMRC)

Orla Fitzsimmons - Patients Association

Anna Steere- Understanding Patient Data

Sibel Ilke Yaman – Care England

Sarah Castell - Involve

Dr Tom Nichols - 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 Jenny Westaway (Office of the National Data Guardian), and Matt Hennessy (NHS Greater Manchester), Andrew Davies (ABHI), Jim Squires (ABPI) Richard Ayres (Care England) and Imran Khan (RCGP). Tom Nichols, Orla Fitzsimmons and Sibel Ilke Yaman deputised on behalf of RCGP, Patients Association and Care England respectively.

No conflicts of interest were raised by members.

Item 2: Overall feedback

Thinks Insight facilitated this agenda item.

Steering Group members were given the opportunity to raise feedback on the draft discussion guides and stimulus packs they had been sent the previous week.

No questions were raised by members.

Item 3: Case studies and 'what ifs'

Thinks Insight facilitated this agenda item.

Members were talked through the latest plans for the case studies across the tier 1 workshops. Members were split into two breakout rooms to discuss the case studies and accompanying ‘what if’ questions.

Feedback was given on each specific case study, more general feedback included:

• The case studies need to cover the tricky points within the opt out landscape, with a range a contexts and medical conditions.
• The topics within the case studies should enable participants to further understand the detail of opt out, but also challenge participants existing assumptions.
• The case studies should gradually build with each workshop to cover as much opt out granularity as possible.
• The existing five case studies might be too much for participants, some members advised cutting one, but there was no consensus on which was required least.
• A ‘less is more’ approach should be applied across the case studies as it would give participants more space to understand the issues.

Item 4: Provision of legal information

Thinks Insight facilitated this agenda item.

Steering Group members were presented with the current plans for the provision of the legal governance surrounding opt out. Members were split into breakout rooms to provide comments in more detail.

Feedback included:

• Which elements of the legal background are presented to participants should depend on what is in scope of the deliberations.
• The legal landscape is incredibly complex. Where possible, it should be simplified for participants.
• The design should ensure participants understand the difference between policy and law with regards to opt out.
• The participants should firstly be provided with what is vital to know, extra information can be used for context setting.

Item 5: Process of recommendation forming

Thinks Insight facilitated this agenda item.

Steering Group members were talked through the process of moving from information provision and deliberation to recommendation forming throughout the series of workshops. There was a caveat that designs for workshops 4 and 5 were less substantial, as their content depended on what happened in the first three sessions. Members went into breakout rooms to give discuss in detail.

Feedback included:

• The trade-offs needed to use less technical wording to be participant friendly.
• The design team should be transparent with participants where there is complexity, especially where complex systems would cause an issue.
• There should be an opportunity for participants to reflect on where their views had altered over the deliberation process.
• The choices participants were being asked to make are not binary, and the facilitators should understand that during discussions.
• The trade-offs could be introduced more gradually, beginning much earlier in the workshops to frame the discussion more.

Item 6: AOB and closing

The chair facilitated this agenda item.

The public engagement design lead reminded Steering Group members of deadlines for feedback on the materials and flagged when the next drafts would be distributed for feedback.

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