Steering group minutes - November 2024

Date: 27 November 2024

Time: 10:00-12:00

Location: MS Teams

Chair: Dr Nicola Byrne, National Data Guardian

Attendees

Dr Nicola Byrne (Chair) - National Data Guardian

Jacob Lant - National Voices

Richard Ayres - Care England

Chris Carrigan - UseMyData

Philippa Lynch - Local Government Association

Nicola Perrin - Association of Medical Research Charities (AMRC)

Nicola Hamilton - Understanding Patient Data

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

Andrew Davies - Association of British HealthTech Industries (ABHI)

Matt Hennessey - NHS Greater Manchester

Ines Marrache Echaiz, Dr Tom Nichols, 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 

Head of Data Strategy, JDPU

Public Engagement Strategy and Project Management Lead, JDPU

Public Engagement Design Lead, JDPU

Senior Policy Advisor – Public Engagement, JDPU

Thinks Insight

Ursus Consulting

Minutes

Item 1: Welcome and apologies

The chair welcomed members to the meeting.

Apologies were made on behalf of Rachel Power from Patients Association, and Jenny Westaway from the Office of the National Data Guardian. Dr Tom Nichols and Dr Imran Khan were welcomed as attendees from RCGP.

No conflicts of interest were raised by members.

Item 2: Tier 1 Public deliberations - initial findings

Thinks Insight facilitated this agenda item.

Steering Group members were informed that Cohort 2 Tier 1 Public Deliberations were complete, while Tier 2 Inclusive Engagement was still ongoing. The presentation would include some initial findings, subject to a substantial caveat that they did not include inclusive engagement or the quantitative survey, and would be subject to more detailed analysis.

The presentation gave a recap of the methodology, and problem statements used to frame Tier 1. Members were then talked through the emerging findings, this included headline findings, alongside the priorities and concerns participants had conveyed during deliberations. The next steps would include further analysis, and findings from all three tiers would be combined to produce the final report.

Feedback from Steering Group members included:

• The design team should be clear on how much information were participants given about GPs’ role as sole decision makers. Participants were presented with a large amount of information, and GPs spoke about their priorities and concerns as data controllers. The engagement team offered to reshare materials with SG members.
• The participants should be told that a single patient record would be a single viewable record, stored in unique locations with unique responsibilities. The design team explained that they were very upfront with participants that technical decisions on the design on the record were yet to be made.
• There are concerns about the impact of technological advances on confidentiality, and how honest patients will be with GPs. These concerns must be considered and measured when NHSE look to make changes such as the single patient record.
• The engagement should understand that people may have inconsistent views, such as wishing to prioritise keeping data confidential but also having an expectation data is available when needed by those responsible for their care.

Item 3: Steering group ways of working

The Senior Policy Advisor for Public Engagement facilitated this agenda item.

The presentation set out the programme team wished to take the opportunity following the conclusion of the design phase for cohort 2 to reflect on the design of public engagement programme and how best to collaborate with Steering Group members. Key questions to consider were:

• How can we collaborate more effectively?
• Do we use the most effective methods to gather feedback?
• How is the process for reviewing engagement materials?
• How can we more effectively use your knowledge for case studies and recruiting speakers?
• Do you prefer to comment on strategic or detailed aspects of materials?

The facilitator invited verbal feedback during the agenda item but set out that email feedback was also welcome. Members gave feedback on how the Steering Group had been working so far, the design team committed to actioning this feedback to improve collaboration.

The independents evaluators from Ursus Consulting reflected that they had conducted interviews with 8 steering group members, and would present at the next SG meetings to providing their feedback on cohort 2 so far, incorporating findings from these interviews.

Item 4: Tier 3 - quantitative survey

Thinks Insight facilitated this agenda item.

The item began with a reminder of the survey methodology. Tier 3 would be split into two surveys, one on the GP Health Record, and one on the Single Patient Record. Each survey aimed to take 10-11 minutes, would be sent to a nationally representative sample of 2000 people, it intended to validate the findings from Tiers 1 and 2 through giving participants some information to use when answering the questions.

Participants were shown each survey and talked through the content in detail. Following the conclusion of each survey, Steering Group members were invited to give feedback.

Feedback on the secondary uses of data in the GP Health Record survey included:

• The language should be reviewed to be participant friendly. This would be checked, but planned cog testing would also make sure the language was accessible.
• There should be simple explanation to ensure participants understand the differences between types of data, such as coded and free-text data.
• There should be examples where it may aid understanding, such as different data controllership models. But these examples should be reflective of what NHSE could implement.
• It would be useful if the survey could seek answers on the impacts of change on patient’s health seeking behaviour, specifically what information they would share with GPs.
• The survey should be transparent on which models of controllership are already in existence.

Feedback on the Single Patient Record survey included:

• The need to convey relevant concerns that health and social care professionals have around plans for change.
• There needs to be balance between ensuring the language isn’t overly complex, but also conveys all necessary facts to participants.
• The survey should be clear that the changes would be national, not regional.
• There should be a question that understands patient desire to see who has accessed a record, when and why. This option is possible in quite a few EU countries. It could be within the list of preferences that build public trust.
• The language needs to be accessible; participants may not understand all the different healthcare professions.
• Participants would benefit from a description of a single patient record at the beginning of the survey to make sure the responses aren’t swayed by incorrect perceptions of what this may include.
• There should be a question that allows NHSE to understand the potential conflict between some of the principles of the record, such as efficiency and more open access.
• The questions should be grounded in the strategic aims of the public engagement programme.
• Participants should be made aware of what access is vital, before they answer the question on their access preferences.

Steering Group members expressed a desire to be sent the draft surveys to review outside of the Steering Group meeting. The design team agreed to facilitate this, but noted there would be limited time to comment due to design timeline.

Item 5: AOB and closing

The chair facilitated this agenda item.

No items were raising during AOB, the chair thanked Steering Group members for their contributions and closed the meeting.