Transparency data

Minutes of the National Data Guardian Panel Meeting, 14 November 2023

Updated 3 April 2024

Applies to England

Attendees

Panel members

• Dr Nicola Byrne (chair)
• Dr Joanne Bailey
• Professor Ian Craddock
• Dr Arjun Dhillon
• Dr Edward Dove
• Dame Moira Gibb
• Sam Bergin Goncalves
• Dr Fiona Head
• Mr Adrian Marchbank
• Maisie McKenzie
• Eileen Phillips
• Jenny Westaway
• Professor James Wilson

NDG Office staff in attendance

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

Guests

• Scott Pryde

Observers

• Dr George Fernie

1. Welcome, apologies, and declarations of interest

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

Apologies were received from Dr Natalie Banner and Rob Shaw.

Dr George Fernie, Vice-chair of the UK Caldicott Guardian Council attended the meeting as an observer.

Panel member Dr Arjun Dhillon (an NHS England employee) declared a conflict of interest on NHS England agenda items. The Chair and Panel 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 12 September 2023 meeting as an accurate record.

Head of the Office of the National Data Guardian (ONDG), Ryan Avison, confirmed that there are no open actions they were all agreed as having been completed prior to this meeting.

3. Key updates

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

3.1 Federated Data Platform (FDP):

The successful supplier for the FDP programme is still to be announced (as at the time of the Panel meeting). A check and challenge group is being set up for the FDP by NHSE, which the NDG has been invited to. It aims to provide strategic advice to the FDP programme on communications, engagement, and transparency.

A joint blog Data Sharing in the NHS – Where We’re At With The Federated Data Platform (FDP) is being written by Jacob Lant (National Voices), Nicola Perrin (Association of Medical Research Charities), Nicola Hamilton (Understanding Patient Data) and the NDG and will be published soon on National Voices’ website.

3.2 Biobank: Guardian/observer article re Biobank:

The NDG has been contacted by a number of journalists to comment on the recent coverage of Biobank’s sharing of data with insurance sector companies. The NDG states that for any collection of consented data it is important that individuals are given clear information about how data about them will be used and safeguarded in future so they can fully understand and meaningfully consent to the terms of their donation. Then, after expectations are set, there should be no surprises for people about how their data is used.

3.3 National Data Opt-Out (NDOO):

The NDG confirmed that she is in regular contact with her sponsor team in the Department of Health and Social Care regarding the commitment it made in the data strategy, Data Saves Lives, to revise the NDOO. DHSC has not yet shared with the NDG any proposals describing what these revisions might be. The NDG will invite the DHSC policy team to attend Panel to present any planned amendments at the appropriate time.

3.4 The Health Service (Control of Patient Information Regulations) 2002 reforms:

The Department of Health and Social Care (DHSC) has shared with the NDG its proposals for reforming the COPI notices. The NDG intends to provide early feedback to the DHSC policy team at the end of the month before the proposals are subsequently issued for formal public consultation.

3.5 Carl Beesley leaving the ONDG:

Carl Beesley, Privacy Specialist in the ONDG, is leaving the team for a new role elsewhere at the end of November. The NDG and Panel members thanked Carl for his excellent knowledge and judgement whilst working in the offices of the NDG/UK Caldicott Guardian Council, and they wished him well in the future.

4. Hospital to prehospital feedback

Dr Vicky Chico, Senior Privacy Specialist, Office of the National Data Guardian, attended the NDG Panel to ask for feedback on the draft NDG position on reflective practice as integral to the delivery of safe direct care.

This paper set out a general position that considered when regulated health and care professionals may be able to justify access to confidential patient information (CPI) for reflective practice, which is integral to the provision of safe care. The paper considered:

• the regulatory requirements for health and care professionals to undertake reflective practice
• where, as an activity, reflective practice sits in relation to the concept of direct care as defined in the Information Governance Review, focusing on its role in the assurance of safe and high-quality care
• the limitations and safeguards required when access to CPI is sought for reflection

The Pre-hospital Emergency Medicine (PHEM) feedback project, run by East of England Ambulance Service Trust (EEAST) and Essex & Herts Air Ambulance Trust (EHAAT), is one of many projects across the country that enable lawful access to CPI for the purposes of enabling pre-hospital clinicians’ reflective practice. The ONDG has worked with the PHEM team to write up the PHEM Project as a case study which rests on the NDG’s position that reflective practice is an essential component of the delivery of safe, effective direct care.

The NDG’s Panel members were broadly supportive of the position and highlighted some key areas for further exploration. They would like to understand more about how this position will apply to social care professionals, how reasonable timescales for access to confidential patient information are considered (i.e. how long after the medical event is it still appropriate to access CPI to reflect on it), and how the position can be translated into a more digestible format.

Action: Dr Vicky Chico to engage with Social Work England for their views on the paper.

5. NHS England Outcomes and Registries programme

Scott Pryde, Outcomes and Registries Programme Director, NHS England attended the NDG’s Panel meeting to present on the work of the Outcomes and Registries Programme.

He gave a presentation in which he explained that:

• England is now the first country in the world to have established a national approach to Outcome Registry data collection in regulations, policy and in practice that covers both the NHS and private sector
• the data collections are mandated by a Secretary of State Direction to deliver key recommendations made by the Cumberlege Review and the Paterson Inquiry, as well as to develop a unified, strategic approach to the implementation of NHS Outcome Registries
• The Outcomes and Registries Programme is a patient-centred, clinically led programme, the purpose of which is to improve patient safety and outcomes by collecting, linking and analysing data more effectively
• the data will be used to support direct care, clinical practice, innovation, and research

Panel members discussed the key themes from the presentation and made several observations.

Panellists welcomed the ambition of the programme and how the approach can work in practice. Panel members were reassured to hear that the programme team is thinking about the complexities of ensuring any future uses of the data align with what patients have been told in the past about the registries (for instance where specific uses were outlined when a patient consented for their data to be included in a registry), and what they are doing to further increase patient involvement in practical areas of the programme’s development.

The NDG thanked Scott for his clear and helpful presentation and discussion and told him to get back in touch if she could help further.

6. Any other business

Inappropriate access to patient records

A member of the NDG Panel raised the issue of the inappropriate access to patient records by a member of staff at Cambridge University Hospitals, a case which is already in the public domain through media coverage. The ONDG team provided an update on the NDG’s involvement in this issue.