Council Meeting

Tuesday 21 July 2026, 13:00-16:00 

Location: Virtual meeting via Microsoft Teams  

Council members in attendance

George Fernie (Chair), Helen Dyer (Vice Chair), Adrian Marchbank, Christopher Fincken, Martin Crook, Chris Bunch, Colin Harper, Neil Bhatia, Darren Lloyd, Katie Thorn, Alison Metcalfe, Arjun Dhillon, Erum Nomani. 

Observers

Deborah Topping, Claire Rafferty, Jonathan Shaw, Anna Steere (Understanding Patient Data) 

Apologies

Jonathan Osborn, Sophie Reed, Matthew Noble, Jason Smith, Mark Speller 

Welcome and declarations of interest 

Introductions were made to the group. There were no new declarations of interest. 

Notes from previous meetings 

Council reviewed the notes of the 28 May 2026 Council meeting and accepted them as an accurate record of the previous meeting. 

Actions  

The UKCGC Chair and Council members reviewed the action log. An update was provided by the Chair on the open actions.  

  • UKCGC podcasts – The first podcast has been completed and is awaiting final approval before publication. Members acknowledged the work undertaken to bring the project to completion. 

  • Caldicott Guardian Development Programme – Helen Dyer advised that work on the Caldicott Guardian Checklist is progressing and will form part of the wider development programme. Further ideas and suggestions from Council members are welcomed.

  • Confidentiality Matters campaign – An update was provided on work relating to confidentiality incidents and public trust. DHSC is engaged in stakeholder discussions. NDG has partnered with UKCGC to undertake a focus group with Caldicott Guardians, which generated significant interest and demand. 

  • Reasonable Expectations– Arjun Dhillon highlighted the continuing importance of the reasonable expectations work, particularly in relation to AI, public trust and large-scale data use. It was agreed this work should remain visible on the Council agenda. It was confirmed that this is in the plans to invite Jenny to the September UKCGC meeting.  

 Chair and Vice Chair’s report 

Breakfast Clubs & Evening Classes 

  • Helen Dyer sought feedback on the round-up papers provided to Council and welcomed views on their ongoing value. Members were supportive of the reports and highlighted the value of the information gathered through Breakfast Clubs, Evening Classes and other UKCGC activities. It was suggested that learning and resources generated through these activities could be collated, curated and shared more widely with the wider Caldicott Guardian community through newsletters, online resources or thematic summaries. 

  • Evening Classes continue to attract strong engagement, with several successful presentations delivered since the previous meeting. Helen advised that she intends to develop a more sustainable process to allow the programme to become increasingly self-managing. Additional volunteers to support the programme were welcomed. 

  • Breakfast Clubs continue to grow in popularity, with additional requests for membership received since the previous meeting. Members noted the breadth of discussions and the role the group has played in supporting initiatives such as Confidentiality Matters.  

  • Updates were provided on collaboration with the Digital Care Hub Social Care Caldicott Guardian Learning Network, including a forthcoming programme focused on Caldicott Principles and case studies. 

  • Planning for the UKCGC Annual Conference remains on track. Over 480 places had been booked and speakers and agenda development were progressing well.  

  • Members were encouraged to contribute topics and presentations for future Evening Classes. 

Confidentiality Matters Campaign and UKCGC Activity 

  • Weekly meetings between the Chair, Vice Chair and Secretariat continue and have helped improve programme oversight and planning. 

  • One-to-one meetings with Council members have now been completed. A summary paper has been circulated and members were invited to review and provide any amendments or additional comments.  

  • The Caldicott Guardian Checklist Working Group has met and received strong engagement from contributors.  

  • Representation has continued at a range of stakeholder meetings and events, including local authority Caldicott Guardian meetings, Confidentiality Matters meetings, IG Key Messages webinars and conference planning meetings.  

  • Arjun Dhillon suggested that valuable content generated through Breakfast Clubs, Evening Classes and other UKCGC activities could be curated and shared more widely through newsletters or online resources. Members welcomed the suggestion.  

  • An updated four nations legislation resource has been developed and is currently undergoing external review before wider circulation. 

Items submitted by Council members 

No additional items were raised by Council members. 

Requests for Advice and Information 

The Chair provided an overview of requests received since the previous meeting. 

A total of 12 requests for advice had been received, covering: 

  • Support for newly appointed Caldicott Guardians 

  • Data sharing and confidentiality concerns 

  • Alleged GDPR breaches 

  • Patient access and accuracy concerns 

  • Requests relating to research approvals 

  • Development of local training resources 

  • Access to records of deceased patients 

  • Requests for details of local Caldicott Guardians and available training opportunities.

Nottingham Inquiry 

George Fernie presented an overview of his involvement in providing evidence to the Nottingham Inquiry on behalf of UKCGC. 

Key points included: 

  • The inquiry sought the perspective of UKCGC regarding information sharing, confidentiality and the role of Caldicott Guardians. 

  • The submission highlighted the importance of the Caldicott Principles, particularly Principle 7, which emphasises that the duty to share information can be as important as the duty to protect confidentiality. 

  • Recommendations included greater use of Caldicott Guardians when public interest disclosures are being considered, enhanced professional development, and improved understanding of lawful and ethical information sharing. 

  • Members discussed the wider lessons arising from the inquiry, including appropriate information sharing, maintaining public trust, managing access to sensitive records and supporting Caldicott Guardians to make confident decisions in complex circumstances. 

    Council thanked George for his work on behalf of UKCGC and welcomed the opportunity UKCGC had been given to contribute to the inquiry 

Understanding Patient Data 

Anna Steere, Director of Understanding Patient Data (UPD), provided an overview of recent work being undertaken by the organisation. 

Key points included: 

  • UPD was established following the National Data Guardian review of data opt-outs and aims to improve public understanding and trust in the use of patient data.  

  • Recent work includes public sentiment tracking, media analysis, community engagement projects and development of communications resources. 

  • Findings from three waves of public polling indicate strong support for the use of data where there is a clear public benefit, but continuing concerns around AI, digital technologies and access to information by inappropriate parties. 

  • Significant discussion centred on national data opt-outs, public understanding of data use and public perceptions of organisations such as Palantir. 

  • UPD's analysis suggests media coverage has a measurable impact on public confidence and opt-out behaviours, reinforcing the need for open, transparent communication about data use. 

  • Members discussed public trust, digital exclusion, meaningful engagement, transparency, and the importance of providing clear information regarding how personal data is used. 

Council thanked Anna for an informative and thought-provoking presentation. 

Any other business 

Helen Dyer advised members of forthcoming discussions with the Federation for Informatics Professionals (FEDIP) regarding the professionalisation of informatics and digital roles and the role of Caldicott Guardians within that framework. Members discussed the importance of ensuring any role descriptions fully reflect the ethical, professional and advisory elements of the Caldicott Guardian role rather than presenting it as a standardised full-time position. 

 

Next meeting: Wednesday 23 September 2026,13:00-16:00