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Attendees

Panel members

• Dr Nicola Byrne (chair)
• Dr Natalie Banner
• John Carvel
• Claire Delaney-Pope
• Dame Moira Gibb
• Dr Fiona Head
• Maisie McKenzie
• Dr Jess Morley
• Professor Daniel Ray
• Rob Shaw
• Jenny Westaway
• Professor James Wilson

Guests

• Doreen Tembo - Public Engagement in Data Research Initiative (PEDRI)
• Samaira Khan - Public Engagement in Data Research Initiative (PEDRI)
• Michael Chapman - NHS England
• Narissa Leyland - NHS England

Office of the National Data Guardian team

• Ryan Avison
• Dr Helen Bauckham
• Dr Vicky Chico
• Layla Heyes
• Rachael Merrison

Observer

• Dr George Fernie – Vice-chair UK Caldicott Guardian Council

1. Welcome, apologies, and declarations of interest

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

• Apologies were received from Dr Arjun Dhillon and Mr Adrian Marchbank.
• Dr George Fernie, vice-chair of the UK Caldicott Guardian Council, attended as an observer.
• Panel member Dr Jess Morley declared a conflict of interest regarding Item 5. Jess had previously worked on the OpenSAFELY system as a policy lead. The chair and the panel agreed that Jess could still participate in the discussions. The panel member also disclosed that she had been asked to write an editorial on the Sudlow Review and currently sits on an AI and data advisory board for NHS England.

• Maisie McKenzie declared a conflict of interest for Item 4. She attended a meeting for Health Data Research UK regarding data access and research environments, and the chair and panel agreed that she could participate in discussions.

• There were no other potential conflicts of interest declared.

2. Minutes from previous meeting, actions, and decisions

Professor Daniel Ray highlighted that during the SDE accreditation discussion at the previous panel meeting, there had been a conversation about the consequences of organisations failing to meet an SDE accreditation, and that this should be captured in the minutes. The panel agreed to this amendment, and with this addition, the minutes from the meeting held on 17 September 2024 were approved by the members.

All actions were agreed as having been completed prior to this meeting.

3. Key updates

Ryan Avison, Head of the Office of the National Data Guardian, led the key updates, summarising key ONDG activities since the last panel. Other ONDG members also contributed.

3.1 NDG annual report 2023 – 2024

Progress on the NDG’s annual report is well underway, with publication planned for December 2024. Ryan expressed gratitude to the panel members for their valuable contributions and feedback on the NDG’s updated vision, mission, and strategic objectives, which will form part of the report.

3.2 Sudlow Review

The , authored by Cathy Sudlow, was published 8 November 2024. Ryan provided a summary of the report’s overarching recommendations, which prompted a discussion amongst panel members about whether it had implications for privacy and patient confidentiality. Dr Nicola Byrne noted that the office is yet to digest the report and recommendations in full and consider these against other Government commitments and ambitions.

3.3 Data (Use and Access) Bill, 2024 reintroduced

The office provided an update on the Data (Use and Access) Bill 2024, which succeeds the Data Protection and Digital Information Bill. The Bill is set for its second reading in the House of Lords on the 18 November. The office is reviewing provisions in the Bill relevant to the NDG’s remit prior to determining whether the NDG should take any action relating to the Bill.

3.4 Reasonable Expectations project

Dr. Helen Bauckham updated the panel on the progress of the Reasonable Expectations (RE) project, which has now entered the quantitative research phase. A final project report is scheduled for publication in 2025. She thanked NDG panel members Jenny Westaway, Dr James Wilson, and Dr Ted Dove for their invaluable support and assistance with the RE project. Helen also announced that she will be leaving the office in December 2024 following a promotion within NHS England. The NDG and Ryan commended Helen for her exceptional contributions to the team since joining in 2022 and extended their best wishes for her new role.

3.5 London Data Service (LDS) and the subnational secure data environment (SNSDE)

On 9 October representatives from the London Data Service (LDS) and the subnational secure data environment (SNSDE) participated in a NDG roundtable meeting to discuss their goal of creating a person-level, linkable longitudinal record. This record would use routinely collected data from all care settings to support direct care delivery and to support actionable insights from planning and research. The discussion focussed on how LDS could undertake their programme of work whilst upholding the duty of confidentiality. Following the meeting the NDG wrote to LDS to provide a summary of the conversation and some of the questions it raised for the NDG.

4. Public Engagement in Data Research Initiative (PEDRI) project  

The team from the Public Engagement in Data Research Initiative (PEDRI) attended panel to provide an update and summary of their ongoing work. The PEDRI team outlined their key objectives, two of which are:

• to establish and advance good practices for public involvement and engagement (PIE) in data driven research and statistics
• to ensure that both health and non-health data are managed and used in ways that demonstrate trustworthiness and build public confidence

The team gave a progress update on Phase 1 of PEDRI, and shared their mission for Phase 2, which focuses on uniting organisations across the UK’s data-driven research and statistics sector. Their goal is to drive continuous improvement in public involvement and engagement in both policy and practice. Additionally, the PEDRI team provided an update on the development of Good Practice Standards, including ongoing work and the consultation related to these standards. The panel asked questions about their approach to working with commercial providers, its insights about work outside the health and care sector, and PEDRI’s unique selling point.

The panel thanked the team for their informative presentation and participation in the meeting.

5. Developments in the use of OpenSAFELY

NHS England (NHSE) joined the panel to provide an update on the developments surrounding the use of OpenSAFELY. The update builds on the information shared with the NDG panel during its January 2024 meeting. The team highlighted the need to reopen OpenSAFELY for new COVID-19 analysis, as well as the consideration of expanding its use for broader non-COVID-19 analysis, drawing lessons from previous initiatives to collect GP data for planning and research purposes.

NHSE provided a summary of the Control of Patient Information (COPI) Regulations 2002, which were used to establish a legal basis for the OpenSAFELY service, and the subsequent shift of its legal basis to the current COVID-19 Public Health Directions 2020.

The NHSE team outlined its intention to launch a time-bound pilot of OpenSAFELY for research, clinical audit, health surveillance, and service evaluation purposes – beyond COVID-19 research. It noted that a new Direction would be required to establish this pilot. NHSE also detailed the strong safeguards in place under the new Direction and within OpenSAFELY that protect data. Furthermore, they affirmed their commitment to consulting and engaging with stakeholders and patients regarding any expansion of the OpenSAFELY service and the associated Direction.

Panel members enquired about how this initiative differed from the General Practice Data for Planning and Research (GPDPR) programme. NHSE clarified that whilst the overall goal is similar to GPDPR, the scope and approach are more limited in order to build trust with both professionals and the public. Panel members subsequently recommended that any communications clearly address the concerns raised by public and professionals about that programme, and highlight how this pilot differs, especially in terms of the additional technical safeguards, professional support and transparency offered by the OpenSAFELY operating model.

The panel also emphasised the importance of local engagement to ensure continued professional buy-in and discussed the need to define clear success metrics for the pilot’s use cases to demonstrate its utility and benefits before moving into full implementation.

The NDG reiterated her strong support for the initiative, emphasising how the responsible use of GP data would drive improvements in population health, enhance the quality of care, and contribute to the long-term sustainability and efficiency of our health and care services for the benefit of the public. She thanked the NHSE team for their continued engagement with both her and the panel, recognising the significance of this ongoing collaboration.

6. Any other business/ NDG Terms of Reference

Panel members formally approved the updated version of the NDG Panel’s terms of reference, noting that it is a public document and will be published on the NDG website.

No further points were raised.