Council Meeting

Wednesday 25 March 2026, 13:00-16:00 

Location: Virtual meeting via Microsoft Teams  

Council members in attendance

George Fernie (Chair), Helen Dyer (Vice Chair), Christopher Fincken, Martin Crook, Adrian Marchbank, Matt Noble, Erum Nomani, Sophie Reed, Mathew Fry, Jenny Westaway, Katie Thorn. 

Observers

Andrew Latham, Deborah Topping. 

Apologies

Jason E Smith, Neil Bhatia, Chris Bunch, Arjun Dhillon, Claire Rafferty, Jonathan Osborn, Allison Newell. 

Secretariat 

It was agreed that the meeting would be recorded to aid note taking. The recording would be deleted once a record of the notes had been made final. 

Welcome and declarations of interest

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

Notes from previous meetings

Council reviewed the notes of the 27 November 2025 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. 

Key items:  

  • Breakfast clubs & Evening classes: Dates and topics have now been agreed and published on the UKCGC website. 

  • Podcasts: Proposal complete and now in early stages of planning for first episode.  

  • Caldicott Guardian Development Programme: Email has been sent to all Members inviting volunteers to take part in updating the UKCGC checklist to form working group, with work to commence in June 2026. 

Chair and Vice Chair’s report

Breakfast clubs & Evening classes

  • A big thank you to those who have volunteered to present an evening class in 2026.  

  • Offer to present additional sessions on any new topics is still open – to get in touch with Helen Dyer if interested. 

  • Relatively high sign-up rate for evening classes and discussions continue to be successful and supportive. 

  • Breakfast club currently has 300 active Caldicott Guardian members.  

  • Meeting with ICBs scheduled to take place on 29 April 2026, 4-5pm.  

  • Action: Helen to feedback outcome of session at next meeting.

UKCGC council representation in meetings

  • Meetings with DfE and MoJ are ongoing – Council members will continue to be updated as work progresses. 

  • Christopher Fincken will update Council members (if relevant) on National Domestic Abuse and Violence forum. 

Updates from working groups

  • Progress on the updating of e-learning modules on e-LfH is ongoing.  

  • Since previous UKCGC meeting in November, there have been 24 requests for advice and 23 requests for information received.  

UKCGC Constitution 2025-2028

  • No objections to this document.  

Health Data Compass

  • Developed by Understanding Patient Data with the aim of providing a live, collective evidence hub bringing together public insights on health data across the UK healthcare system, whereby results of any research can be uploaded and shared with other researchers. 

  • Helen to keep Council members informed with any new updates. 

  • Expected to go live in September 2026. 

Victim and Courts Bill

• George and Helen have been approached by MoJ with regards to developing guidance for the Victims and Courts Bill. This has passed through the House of Lords and is currently in the final stages of approval.

• Bill has several aims:

• make provision about the experience of victims within the criminal justice system;

• about the functions of the Commissioner for Victims and Witnesses;

• about procedure and the administration of criminal justice.

• Relating to Caldicott Guardians, there is a proposal that there will be an automatic restriction on parental responsibility of any child who is convicted of a serious sexual offence that attracts a 4-year sentence or above.

• This bill proposes to strengthen the existing scheme from the Domestic Violence Crime and Victims Act 2004.

• MoJ is exploring support from Caldicott Guardians in terms of making lawful, ethical, and appropriate decisions around release of information to victims about prisoners and their health and care information.

• It places duty on local authorities to share information with the victim’s commissioner.

• MoJ have produced factsheets: vac-factsheets-victims.pdf

Office of the National Data Guardian (ONDG) update

Progress update

Mat Fry (Head of NDG Office) outlined current priorities for NDG Office:

Opt-out

Jenny Westaway (NDG Panel member) and Mat joined a regular touch point with DHSC policy team who updated on options to explore reform of the opt-out landscape.

Next steps:

• To draw upon expertise of multidisciplinary team including tech, and NHS App.

• Opt-out subgroup will be established by DHSC ahead of further public engagement, currently planned for the summer.

Single Patient Record (SPR)

• At the recent senior delivery and sponsorship meeting with NDG, this was also discussed, including feedback from the NDG provided on the SPR.

• There were further references of: the Bill, which is still in early stages and the group will remain informed as work progresses; the architecture (still in early stages); using SPR for secondary uses.

• Currently, not clear on what will be considered primary and secondary purposes but hoping that this will become clear. NDG view is that the primary purpose must be for direct care (i.e. useful for clinicians, must improve the access to useful information, must deliver use to patients).

Control of Patient Information (COPI)

• Presently on hold and hoping for more detail in the next couple of weeks – group will remain informed.

Legislative proposals

• Discussions are underway and more information on next steps will be shared with group when possible.

NDG annual report 25/26

• Layla Hayes (Communications Manager, ONDG) will shortly set out roadmap for next NDG annual report – hope is to include breadth of work covered in UKCGC.

Confidentiality Matters campaign

• Mat presented overview on progress of this campaign – aim is to address the inappropriate access of patient records by staff in health and social care settings – a behavioural change campaign.

• Delivery options to be confirmed in Q1 26/27.

• Timescale hoping to be released in April/May following confirmation of delivery options.

• Regular updates on progress will be shared at each UKCGC meeting.

• Group showed significant support for this campaign and the need to address this issue.

• Suggestion from Helen Dyer for Caldicott Guardians to take a role in co-production of campaign.

• Helen noted that at the first working group there was a suggestion for module one of renewed e-learning module to focus on confidentiality.

• Helen mentioned some recent work she has undertaken regarding confidentiality which relates to prosecutions under the Computer Misuse Act in the Falkland Islands and highlighted the effects of loss of trust in health and care services. It was acknowledged that there is a relationship between those who view their own records and then go on to view others’, and that this should be within scope of this campaign.

• Sophie Reed noted a “Red Flags” digital health and social care pilot (8-week trial) uses short, visual pop-up messages to remind staff about good practice (e.g. locking screens, cyber security). Currently in evaluation phase.

• It was noted that the approach could be adapted to reinforce messages such as not accessing records inappropriately and maintaining trust.

• Acknowledgement that success measure could be the extent to which messages are reached at local level.

• Trust Boards have key role in advocating key messages of campaigns across all staff levels.

• Action: Nisha to take all suggestions offline and discuss with project team.

Direct care and indirect care definitions

• Jenny Westaway presented current thinking relating to direct care, indirect care and implied consent, prompted by NHS England’s development of guidance on access to confidential patient information for local clinical audit.

• Information Governance Review (2013) sets out that implied consent is only applicable in the context of direct care (including clinical audit). It also defines local service evaluation as indirect care.

• Jenny reported that NHS England’s engagement with frontline professionals found little practical distinction in data governance terms between clinical audit and service evaluation.

• Jenny highlighted recent NDG work, including the November 2025 position on reflective practice, recognising that activities supporting safe, high-quality care may fall within direct care where safeguards apply.

• Erum Nomani raised concerns about the definition of direct care, patient expectations, and risks associated with access to sensitive records.

• Some attendees felt that the 2013 definition of ‘implied consent’ may be outdated, advocated for a shift towards reasonable expectations as the prism for deciding where used of confidential patient information may be used without a breach, and emphasised transparency and patient understanding.

• Adrian Marchbank supported moving away from rigid distinctions between audit and service evaluation, noting that continuous evaluation is integral to delivering safe and effective care.

• Andrew Latham highlighted challenges for organisations operating in grey areas between direct care and secondary use, noting that a reasonable expectations approach could reduce unnecessary barriers.

• Sophie shared practical experience from social care, highlighting the value of DPIAs, clear justification, and governance controls when using data to improve care.

• Jenny advised that the NDG Office is minded to recommend that local service evaluation be treated in a similar way to local clinical audit in the upcoming NHS England guidance, reflecting changes in practice and public expectations.

• Strong support was expressed by members to pursue a reasonable expectation–based approach, with Helen noting that existing tools such as DPIAs could support implementation.

• Action: NDG Office to attend future UKCCG meeting with a further paper setting out longer term options, including use of reasonable expectations as a legal basis, and seeking Council input.

Any other business

None raised.

Next meeting: Thursday 28 May 2026, 13:00-16:00.