Transparency data

Minutes of the National Data Guardian Panel Meeting, 15 July 2025

Updated 28 October 2025

Applies to England

1. Attendees

1.1 Panel members

• Dr Nicola Byrne (chair)
• Dr Natalie Banner
• John Carvel
• Claire Delaney-Pope
• Dr Fiona Head
• Dr Jeffry Hogg
• Mr Adrian Marchbank
• Dr Jess Morley
• Professor Daniel Ray
• David Sharp
• Professor James Wilson

1.2 Guests

• Tom Lymn
• Gareth James

1.3 Office of the National Data Guardian team

• Dr Vicky Chico
• Layla Heyes
• Rachael Merrison

2. 1. Welcome, apologies, and declarations of interest

National Data Guardian (NDG), Dr Nicola Byrne, chaired the meeting.

• Apologies were received from Dr George Fernie, Maisie Mckenzie, Rob Shaw, Jenny Westaway and Helen Dyer.
• No declarations of potential conflicts of interest were declared.

3. 2. Minutes from previous meeting, actions, and decisions

Panel members accepted the minutes from the 13 May 2025 meeting with two corrections to spelling and abbreviations.

All actions were agreed as having been completed before this meeting.

4. 3. Key updates

Dr Vicky Chico led the key updates, summarising key ONDG activities since the last panel. Other ONDG members also contributed.

4.1 Roundtable on the Single Patient Record

Members were thanked for contributing to the recent NDG Roundtable on 9 July 2025, bringing together NDG staff and panel members, NHS England representatives and colleagues working for the Australian Government Department of Health, Disability and Ageing. The purpose of this meeting was to discuss the Australian experience of implementing ‘My Health Record’ (MHR), with a view to the development of the Single Patient Record (SPR).

Whilst MHR is not directly comparable, there were a number of key aspects in its development that will be useful to consider in the UK context. Participants discussed challenges associated with role-based access, the current technical focus of consultation, the use of ‘patient’ rather than a term that encompasses social care, the need for the solution to prioritise usability for clinicians, and sharing learning from local experiences of rolling out the shared care record.

The NDG will continue to engage with key stakeholders as plans for the SPR develop.

4.2 NDG research project: Reasonable Expectations and Screening

The Office of the NDG is close to publishing the report on its Reasonable Expectations research project, and will share the draft with panel members as soon as possible.

Dr Vicky Chico also confirmed that discussions are being held with the Confidentiality Advisory Group (CAG) and NHSE to confirm the position on the use of patient data to quality assure cancer screening services, and how this aligns with the definition of direct care in the light of the research.

Panel members also discussed the applicability of this research to the quality assurance of AI tools currently being developed for validation or revalidation purposes.

4.3 10 Year Plan

Dr Nicola Byrne provided a brief update on the 10-year plan, covering points of interest in terms of the language used and public expectations.

5. 4. Reforming the Control of Patient Information Regulations (COPI) – initial proposals for discussion

Tom Lymn (Data Policy, NHS Transformation Directorate and the Department of Health and Social Care) delivered a presentation that covered a series of proposals for reforming the Control of Patient Information Regulations (COPI). The presentation concerned proposals to be considered alongside opportunities for reform within primary legislation, which would be necessary to merge the functions of NHS England with the Department of Health and Social Care.

Panel members acknowledged that the proposals were high-level and exploratory and did not contain any significant detail at this stage. One key area where clarity was lacking was whether the approach would involve introducing discrete, specific regulations for particular uses of data, or pursuing broader legislative reforms.

There was a concern that reforming the COPI regulations at pace, without first securing the support of patients and the professionals who care for them, could have a significant impact on public and professional trust.

Members also discussed proposals to define direct care in legislation. The discussion focused on whether the COPI Regulations are the appropriate mechanism for provisions relating to the processing of health data for direct care (given the existing provisions under the NHS Act 2006 regarding the use of the regulations for care and treatment).

The NDG welcomed further engagement as the programme progresses.

6. 6. Any other business

Panel member John Carvel reflected on a talk he attended at the Cambridge Health Institute. He noted some of the key takeaways, including the Tony Blair Institute’s vision for modernising the NHS through healthcare data and AI.

No further points were raised.