Council Meeting
19 July 2023
Present
Dr Arjun Dhillon (Chair), Dr George Fernie (Vice-Chair), Dr Neil Bhatia, Dr Chris Bunch, Prof Martin Crook, Helen Dyer, Christopher Fincken, Darren Lloyd, Mr Adrian Marchbank, Dr Alison Metcalfe (attending on behalf of Allison Newell)
Guests
Claire Bloomfield (NHS Transformation Directorate)
Observers
Colin Harper, Dr Phil Koczan, Jonathan Osborn, Sophie Reed, Dr Farrukh Shah, Debbie Topping, Dr Koravangattu Valsraj
Secretariat
Ryan Avison, Dr Helen Bauckham
Apologies
Andrew Harvey, Rhidian Hurle, Dr Matt Noble, Dr Erum Nomani, David Riley, Brig Duncan R Wilson
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 May 2023 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. Five actions remain open with an update provided by the Chair on progress for each. All other actions were agreed as having been completed or ongoing prior to this meeting.
Chair and Vice Chair’s report
The Chair and Vice Chair updated Council on recent activities and the key meetings they have attended:
1. Breakfast Clubs: The last breakfast club took place on Friday 30 June. The next breakfast club is on Thursday 27 July.
2. Evening Classes: Helen Dyer is running a series of evening classes for Caldicott Guardians. The next evening class is taking place on Tuesday 8 August (5:30-6:30pm) and will be on “Legal framework: a simple overview for Caldicott Guardians”. The UKCGC Chair thanked Helen Dyer for running the evening classes.
3. Caldicott Guardian Conference: The Caldicott Guardian Conference took place on 23 May 2023. The UKCGC Chair thanked all Council members who spoke at the event.
4. UKCGC Chair attended NDG Panel: the UKCGC Chair attended the NDG Panel meeting on 18 July 2023. Guests included the GP Connect team and the NHS Insight and Feedback team – National Patient Experience Surveys.
General Updates from Council Members
This agenda item in Council meetings is a dedicated space for Council members to discuss updates on working groups, breakfast clubs, evening classes and UKCGC representation on meetings.
Helen Dyer provided updates from the breakfast clubs and evening classes for Caldicott Guardians.
Topics from Council Members
Council members are invited to submit topics of interest for discussion at Council meetings, in advance of the meeting.
Christopher Fincken presented on “Failure to Share”, providing a summary of the importance and challenges of child safeguarding practice. Christopher highlighted the challenges associated with understanding when and if to release information, particularly regarding the serious threshold for releasing information.
Council members discussed and echoed Christophers concerns and offered support.
Actions: UKCGC will respond to the Department for Education consultation on Information Sharing Advice for Safeguarding Practitioners. A working group will be established to formulate a response. Following the consultation response, UKCGC will then develop a toolkit/guidance. Safeguarding information should then be added to the Caldicott Guardian manual.
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.
Wales Perspective for Caldicott Guardians
Darren Lloyd (Associate Director for Information Governance and Patient Safety, Digital Health and Care Wales (DHCW)) presented at UKCGC to provide a perspective from NHS Wales for Caldicott Guardians. Darren provided an overview followed by a deep dive into the systems and services currently provided in Wales.
Darren discussed DHCW’s strategy, emphasising the importance of developing an information governance framework to provide confidence in the system. The strategy has been developed with the central vision of: “An adaptive, responsive and enabling ‘Once for Wales’ approach to IG compliance that fosters trust and confidence in uses of health and social care data.”
Darren provided an overview of the similarities and differences between legislation and initiatives in Wales compared to England, highlighting that there is significant overlap in challenges and context. One important framework that has been introduced in Wales is the Wales Accord on the Sharing of Personal Information (WASPI), which supports service-providing organisations directly concerned with the health, education, safety and social wellbeing of people in Wales.
Darren highlighted that there remain gaps in the Welsh system for policy governance and decision making, for example there is still no policy decision on the introduction of Caldicott Guardians to health and social care organisations. Although the appointment of Caldicott Guardians has not yet been introduced as a policy decision in Wales, the Caldicott principles are widely recognised and have been adopted in practice.
Council thanked Darren for his presentation and valuable insights to the Welsh perspective for Caldicott Guardians.
Secure Data Environment / Trusted Research Environment (SDE/TRE) Programme Update
Claire Bloomfield (SRO for the Data for R&D programme) attended Council to provide an update on the SDE/TRE programme. Claire previously attended Council on 19 October 2022. Claire provided an overview of how the Data for R&D programme sits in the landscape of the NHS and gave an update on the programmes deliverables over the last 10 months.
Claire shared a new Data for R&D programme public-facing video titled “Powerful moments, powered by NHS data”. The video is one of a series of case studies demonstrating how patient data has delivered benefits for patients, and society more broadly, also helping to raise awareness of the importance of data in research.
The Data for R&D Programme is currently focussing on 2 strands:
Data-enabled trials
NHS Research SDE Network; the purpose of which is to standardise how decisions are being made
Claire explained that the term “Trusted Research Environment” was replaced by “Secure Data Environment” following public engagement which highlighted that a programme shouldn’t be automatically given the title of being “trusted”.
Some of the key achievements from the programme in the last 10-months include: (1) public deliberation and survey on commercial principles complete (with the Value Sharing Framework ready for publication), (2) Data Access Policy statement published in draft, (3) sub-national SDEs commencing regional-scale patient and public involvement and engagement, (4) commissioned work on SDE approval process with Health Research Authority (HRA), (5) first sub-national SDE approved by HRA confidentiality advisory group (CAG) and (6) Understanding Patient Data (UPD) re-launched (co-funded by the programme).
Claire discussed that sub-national SDEs are at different stages of development and different approaches are being scoped out to enable data to be ingested and processed lawfully for research purposes, with some challenges emerging in relation to common law duty of confidentiality. Claire highlighted two distinct proposed approaches to ensure that there is not a breach in common law:
Pseudonymisation of data
Application to the Confidentiality Advisory Group for section 251 support
Council members discussed the different approaches and the nuances that will need to be considered, including the requirement for a legal basis for the process of de-identifying the confidential patient information.
Council thanked Claire for an insightful and engaging presentation and are keen to continue in conversation with Claire and the Data for R&D programme.
Other Business
No other business.
Next meeting
The next meeting will be held virtually on Thursday 28 September 2023 from 13:00-16:30pm.