Council Meeting
18 September 2024
Present – in person
Dr Arjun Dhillon (Chair), Dr George Fernie (Vice-Chair), Dr Chris Bunch, Alison Metcalfe, Dr Matt Noble, David Riley
Present – online
Dr Faouzi Alam, Dr Neil Bhatia, Carey Bloomer, Helen Dyer, Christopher Fincken, Darren Lloyd, Mr Adrian Marchbank
Guests
Alison Knight (Data and Privacy Specialist at the Health Research Authority: in-person), Rachel Merrett (Head of IG Policy Engagement, NHS England: virtual)
Observers
Phil Koczan (in-person), Jonathan Osborne (in-person), Sophie Reed (online), Deborah Topping (online)
Secretariat
Ryan Avison, Helen Bauckham
Apologies
Rhidian Hurle, Surgeon Commodore Jason Smith
Declarations of interest
Can be found on register of interests. No other new interests were declared.
Notes of previous meeting and matters arising
Council reviewed the notes of the 16 July 2024 Council meeting and accepted them as an accurate record. There were no matters arising.
Action log
The UKCGC Chair and Council members reviewed the action log. An update was provided by the Chair on the four open actions.
Chair and Vice Chair’s report
Caldicott Guardian Conference 2025: after the success of the Caldicott Guardian conference in May 2024, UKCGC are sponsoring the conference again in 2025 and working with Healthcare Conferences UK (HC-UK) to develop the programme.
Chair and Vice-chair attended NDG Panel: the UKCGC Chair and Vice-chair attended the National Data Guardian’s (NDG) Panel meeting on 17 September 2024 virtually. The Data Access Policy Team and Data for Research and Development Team attended the NDG Panel to update on Data Access Policy and Secure Data Environments.
Requests for advice to Council
Council discussed recent requests for advice. The Chair noted that requests were mostly routine questions where the secretariat signposted inquirers to the relevant guidance.
Update on IG Policy Engagement and the IG portal
Rachel Merrett (Head of IG Policy Engagement, NHS England) presented to the Council on the work of NHS England’s information governance (IG) Policy Engagement team. The role of the IG Policy Engagement team is to transform and simplify IG and provide national IG advice and guidance to the system.
Rachel explained that the team operates as a joint unit between NHS England and the Department of Health and Social Care. In addition to running the IG Portal, a one-stop-shop for simplified IG guidance, the team hosts regular webinars for IG professionals and publishes frequent newsletters.
Rachel highlighted the team's ongoing efforts to simplify and transform IG, including developing training modules, establishing a community of practice for artificial intelligence (AI) and automated decision-making, and offering mentorship opportunities for IG professionals. The team is also developing IG role profiles, working towards standardising IG roles.
Council members thanked Rachel for her presentation and recognised the need for closer alignment between UKCGC and the IG Policy Engagement team. This alignment aims to expand IG guidance and support to Caldicott Guardians and encourage collaboration across all IG roles, including Caldicott Guardians, Data Protection Officers (DPO), and Senior Information Risk Owners (SIRO).
Rachel invited UKCGC to join the "check and challenge" group to review draft guidance developed from the IG Policy Engagement group. Council members accepted the invitation to join the check and challenge group.
Council members expressed support for Rachel’s updates and invited Rachel to attend and present at a future UKCGC meeting.
Health Research Authority (HRA) Updates and Information for Organisations Participating in Research Studies
Alison Knight (Data and Privacy Specialist at the Health Research Authority) attended Council to present on the HRA review process for information governance (IG) compliance and the HRA’s new IG updating programme. Alison provided an overview of the HRA’s role in IG, emphasising its commitment to protecting and promoting the interests of patients and the public in trustworthy health and social care research.
Alison updated Council on the UK-wide IG Survey conducted by the HRA in 2022 to understand when and why organisations participating in HRA and Health and Care Research Wales (HCRW) approved research undertake IG reviews. Based on the survey’s findings, the HRA proposed seven actions to improve IG assurances at study set-up. These include clearer guidance on conducting data protection impact assessments (DPIAs), an indemnity statement, and enhanced cross-sector engagement to align HRA IG guidance across the UK.
Alison noted a significant challenge: research sites often lack a clear understanding of IG processes. While the Integrated Research Application System (IRAS) provides a centralised review process, issues persist with duplicate reviews at individual research centres and inconsistencies across devolved administrations. The HRA is addressing these issues by working toward greater consistency in its processes.
Council members discussed the need for effective communication and collaboration between research sites, sponsors, and the HRA. Alison suggested that clearer messaging and guidance on roles and responsibilities could alleviate some ongoing challenges. She also stressed the importance of including public voices in research governance discussions to build trust.
The Council acknowledged the critical role of Caldicott Guardians in research governance, particularly in ensuring ethical compliance and data protection. Alison raised the question of how Caldicott Guardians can be better supported and engaged in the research process. She expressed interest in returning for a future Council meeting and a UKCGC breakfast club to continue discussing the specific role of Caldicott Guardians in this space.
Council members thanked Alison for her presentation and updates and welcomed her offer to return for further discussions.
Other Business
No other business.
Next meeting
The next meeting will be held virtually on 21 November 2024 from 13:00-16:30pm.