Transparency data

Minutes of the National Data Guardian Panel Meeting, 16 January 2024

Updated 14 October 2024

Applies to England

Attendees

Panel members

• Dr Nicola Byrne (chair)
• Dr Joanne Bailey
• Dr Natalie Banner
• John Carvel
• Dr Arjun Dhillon
• Dr Edward Dove
• Dame Moira Gibb
• Sam Bergin Goncalves
• Mr Adrian Marchbank
• Maisie McKenzie
• Eileen Phillips
• Rob Shaw
• Jenny Westaway
• Professor James Wilson

NDG Office staff in attendance

• Ryan Avison
• Dr Helen Bauckham
• Dr Vicky Chico
• Karen Swift

Guests

• Laura Bellingham - NHSE
• Lorna Branton - NHSE
• Michael Chapman - NHSE
• Richard Langley - NHSE
• Mark Roberts - NHSE
• Narinder Sandhu - NHSE
• Eva Simmonds - NHSE
• Ming Tang - NHSE
• Andrew Thorne-Marsh - NHSE

1. Welcome, apologies, and declarations of interest

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

Apologies were received from Professor Ian Craddock and Dr Fiona Head.

Panel member Dr Arjun Dhillon (an NHS England employee) declared a conflict of interest on NHS England agenda items. Following discussion with the NDG it was agreed that he would recuse himself from the meeting after item 3 on the agenda.

Panel member Jenny Westaway is a member of NHS England’s Advisory Group for Data (AGD) and declared a conflict of interest on the OpenSAFELY item.

Panel member Dr Natalie Banner also declared a conflict of interest as a user of OpenSAFELY. Following discussion, and the agreement of the panel, it was decided the declared conflicts were not sufficiently substantial to preclude full participation in the discussion in both cases.

There were no other conflicts declared.

2. Minutes from the previous meeting, actions, and decisions

Panel accepted the minutes from its 14 November 2023 meeting as an accurate record. Two minor amendments were highlighted under items 3 and 5, to be corrected before publication.

3. Key updates

Ryan Avison, Head of the Office of the National Data Guardian, gave the following update:

3.1 Opt-out reform

The NDG is in the process of providing feedback on an opt-out reform paper drafted by the Department of Health and Social Care’s Joint Digital Policy Unit. The NDG has reviewed the proposal with her office and members of her advisory panel, including those who were part of both the original Secretary of State commissioned consultation on the national data opt-out (NDOO) and the advisory panel advising NHS Digital on opt-out delivery.

4. General Practice Data - OpenSAFELY element

NHS England (NHSE) attended the NDG’s Panel to update members on the new OpenSAFELY (OS) arrangement following NHSE entering a commercial agreement with OS which covered the transfer of the OS service into NHSE.

NHSE currently has two separate secure data environments for external users of data: the NHSE Secure Data Environment (SDE) service developed by the former NHS Digital, providing access to data held in NHSE systems, and OS, providing access to GP data and linked datasets for COVID-19 purposes.

NHSE’s long-term ambition is to move to a model where:

• standard data access methods are available for all NHSE controlled datasets, including OS-like access, record level access in secure environments and provision of extracts where policy and permissions allow
• users are granted access in the ‘safest’ fashion that meets their need. With the appropriate approvals, users can ‘step up’ or ‘step down’ between different access modes as needed during the lifecycle of a project
• the level of governance and review is proportionate to risk across all dimensions of the five safes (safe data, safe research, safe people, safe settings, safe outputs), including the environment in which data is accessed and the mode of access. Uses of data are transparent to the public
• movement of data is minimised by federating queries and only bringing together the data required for a specific analysis

NHSE stated that its immediate focus is to ensure that both services are operating effectively in the areas they currently serve. Specifically for OS, the priority is to reopen it for new COVID-19 analyses and then to look to expand beyond those. 

Panel members discussed the key themes from the presentation and made a number of observations. The NDG and panellists were pleased to have early sight of the plans but had questions about how the training and upskilling of analysts would be implemented and operationalised by the system.

Panellists also questioned how joint data controllership would work in practice and if ministerial directions would be updated.

Panel members also thought that it would be crucial to review existing governance and assurance requirements to ensure that trust, transparency and patient engagement are built into their approach.

The team reiterated that this work is still very much in the testing phase, and the potential wider use cases still need to be considered.

The NDG and her panel thanked the NHSE representatives for attending the meeting.

5. General Practice Data for Planning and Research (GPDPR) programme – renaming of the GPDPR programme and how it is evolving its plans to use data

NHSE staff also attended the NDG’s Panel to update members on the overall strategic plans for GP data, following the indefinite pause of the GPDPR programme in summer 2021.

They presented on the challenges of the current aging system and the increasing pressure it is coming under. New requests for the current system are rising and are becoming more complicated. The General Practice Extraction Service (GPES) is struggling to meet these new requests and would need significant redevelopment to meet the urgent direct care use cases being asked of it.

NHSE presented on the lessons the programme has learnt since the GPDPR programme was paused, and how this learning has led NHSE to start considering different strategic models that could resolve the requirements for GP data (direct care and secondary uses).

NHSE explained that there is increased public and professional trust for models where analysts come to the data in a secure online environment, and noted the risks of a central bulk data solution. The team presented very early thoughts on how SDE principles could be utilised to meet multiple GP data requirements. The team stated that they are still working to the previous GPDPR ministerial commitments, and that they are committed to engaging and communicating the public on the evolution of this work.

Panellists noted the importance of public trust and questioned if any new solution could be presented to the public as an advancement of the GPDPR programme. The programme team admitted that the thinking around the new strategic approaches is at a very early stage and the team is committed to engaging stakeholders and listening to feedback.

The NDG and her panel thanked the NHSE representatives for attending the meeting.

6. Any other business

No further points were raised.