Transparency data

Minutes of the National Data Guardian Panel Meeting, 18 July 2023

Updated 3 April 2024

Applies to England

Attendees

Panel members present

• Dr Nicola Byrne
• Mr Adrian Marchbank
• Dr Arjun Dhillon
• Dr Edward Dove
• Eileen Phillips
• Dr Fiona Head
• Professor James Wilson
• Dr Joanne Bailey
• John Carvel
• Dame Moira Gibb
• Dr Natalie Banner
• Rob Shaw

NDG Office staff in attendance

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

Guests

• Clare Enston
• Stephen Elgar
• Katy Lindfield
• Tom Lymn
• Eleanor Berg
• Michelle McDermott
• Chris Morris
• Martin Hillyard
• Scott Grayston

Observer present

Emma Robertson

1. Welcome, apologies, and declarations of interest

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

Apologies were received from Professor Ian Craddock, Jenny Westaway, Maisie McKenzie and Sam Bergin Goncalves.

Emma Robertson, a lay representative on the NDG’s reasonable expectations project, attended as an observer.

Panel member Dr Arjun Dhillon (an NHS England employee) declared a conflict of interest on NHS England agenda items. The chair agreed that Dr Dhillon could provide factual clarifications on the items if required. There were no other conflicts declared.

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

Panel accepted the minutes from its 09 May 2023 meeting as an accurate record.

Head of the Office of the National Data Guardian (ONDG), Ryan Avison, gave an update on one open action. All other actions were agreed as having been completed prior to this meeting.

3. Key updates

Ryan Avison, gave the following updates:

3.1 Federated Data Platform (FDP)

The FDP programme is currently undertaking a Gateway 3 review prior to the full business case approval. The NDG was interviewed by the Gateway 3 team on 17 July 2023.

It was noted that the programme continues to garner public interest as NHS England’s procurement process enters its final stages, with it receiving negative attention from privacy campaigners and others. Their concerns focus on Palantir, the fairness of the procurement process, and calls for more transparency.

Whilst the NDG remains supportive of the programme’s ambition to enable health and care organisations to work together to deliver better care for the people they serve, she continues to have concerns about the lack of public and professional communications and engagement about it. She sees these as essential to securing support for a potentially controversial programme (with reference to the fact that it is already receiving negative media coverage). She is worried about the risk of increased opt-out rates (and the subsequent detrimental impact that this would have on health research and planning) if people decide to opt out because they do not feel suitably informed or reassured about plans for their data. The NDG stated her intention to publish a blog in August outlining this.

3.2 NDG’s reasonable expectations project

The ONDG has received full funding confirmation for the reasonable expectations project from the Department of Health and Social Care (DHSC). The official start date of the project will be Tuesday, 1 August 2023.

3.3 ONDG funding arrangements

Hosting arrangements for the Office of the National Data Guardian have now transferred to NHSE following the dissolution of NHS Digital, which hosted it previously. As an independent, the ONDG will continue to operate as a self-contained entity within its host, with its own governance and reporting structure. Funding for the ONDG is currently being agreed by the DHSC.

3.4 Department of Health and Social Care data pact

DHSC’s data strategy committed to producing a ‘data pact’: an agreement with the public about data. DHSC has shared with us the final report from three focus groups it held to engage the public about the data pact (final name to be decided) about what that pact might contain and the ONDG provided feedback.

3.5 Reviewing Control of Patient Information (COPI) Regulations 2002

The NDG will be asked to comment on the possible options for reform of the regulations.

3.6 Value sharing framework

The Centre for Improving Data Collaboration has recently published its Value Sharing Framework.

3.7 Hospital to prehospital feedback

The ONDG is continuing to work on a paper which sets a position that if regulated health and care professionals need to access confidential patient information to undertake the reflective practice required by their regulator, this can be understood to be integral to delivering safe direct care. We have shared our paper with various regulators for review and feedback and will bring it back to panel to discuss at an appropriate time.

4. National Patient Experience Surveys

Clare Enston, Deputy Director and Eleanor Berg, Information Governance Manager, Insight & Feedback team (NHSE), and Tom Lymn and Katy Lindfield, Data Policy team, Department of Health and Social Care (DHSC), attended the NDG’s panel to discuss National Patient Experience Surveys (NPES).

During Clare’s presentation, she discussed the importance and impact of the NPES on patient care, how surveys are being developed and why it may be appropriate to exempt the surveys from National Data Opt-out (NDOO).

Panellists discussed the NPES and the programme’s assertion that the exemption is necessary to ensure the data remains representative. Clare was asked to explain how data gaps created by the application of the opt-out differ from data gaps created by the cohort of people who chose not to respond to the survey. Clare explained that as it is not possible to understand who has a NDOO, they are unable to ‘adjust’ results in the same way that they would for non-responders to ensure a representative sample of the wider population. This would, in turn, produce a negative effect on the statistical impact of the NPES if the NDOO were to be applied. Clare explained the importance of giving people the opportunity to impact NHS care by sharing their views of their own care experience.

Clare and Eleanor discussed that all developed national surveys which would rely on sampling from people’s health data will apply for Section 251 support through the Confidentiality Advisory Group (CAG) so that confidential patient information can be accessed lawfully in order to identify and invite people to take part. Panellists emphasised that communication is important, and patients should be informed that they may be contacted to complete a survey, even if they have a NDOO.

The NDG thanked Clare, Eleanor, Tom and Katy for the clear and helpful presentation and discussion. The Office of the NDG will continue to engage with the Insight and Feedback team and anticipates reviewing several further national patient experience surveys. Each survey will be reviewed by the NDG on a case-by-case basis to consider if the NDG can support the proposal to exempt from application of the NDOO.

5. Sharing using the GP Connect utility

The GP Connect team attended the NDG’s panel meeting to run an exploratory session on the desirability of adding a (patient-facing) function to GP Connect that would enable people to see who has accessed their health records. GP Connect explained that whilst this functionality is technically feasible, there is no plan to add it currently.

Panel members discussed the pros and cons of adding this functionality to GP Connect. Although panellists generally thought it was a good idea, it was felt that implementation would be complex. Before this functionality could be provided through GP Connect, the panel felt public engagement would be necessary to determine with patients if and how they would like to have access to this information. Panel suggested that a pilot project with a group of patients, members of the public and professional groups should precede any plans to add such functionality.

As this was an exploratory session, no actions have been taken following this item.

6. Any other business

Digital Social Care Advisory Group (DSCAG)

Helen Whately, the Minister of State for Care, is attending the next meeting of the DCSAG on 19 July to discuss innovative practice. John Carvel, panel member, represents the NDG at these meetings. He had a question for panel about the sharing of confidential patient information with unregulated social care volunteers. The NDG position is that relevant confidential patient information can be shared with members of the care team when they have a legitimate relationship with the patient or service user for the purposes of providing care. If volunteers providing care need information to provide safe and effective care, that information must be shared safely, appropriately and proportionately.