Transparency data

Minutes of the National Data Guardian Panel Meeting, 9 May 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
• Jenny Westaway
• Dr Joanne Bailey
• John Carvel
• Maisie McKenzie
• Dame Moira Gibb
• Sam Bergin Goncalves
• Rob Shaw

NDG Office staff in attendance

• Ryan Avison
• Dr Helen Bauckham
• Dr Vicky Chico
• Layla Heyes

Guests

• Dr Natalie Banner
• Dr Prabhu Arumugam
• Will Navaie

1. Welcome, apologies, and declarations of interest

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

Apologies were received from Professor Ian Craddock.

There were no declarations of interest.

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

Panel accepted the minutes from its 21 March 2023 meeting as an accurate record. One minor amendment was highlighted under item 5 to be corrected before publication.

Head of the Office, 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 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. Last year, DHSC sent an initial draft to us, which we fed back on, saying that it needed more public involvement and a longer delivery deadline. They are now working with the Patients Association to hold three focus groups, to help with the initial drafting of a pact that can then be issued for public consultation. Subject to the outcome of the focus groups, DHSC will consult in the summer.

The ONDG voiced concerns that the governance around the planning and delivery of the focus groups could be more robust. Panel discussed timing: it is a time of flux for NHS data policy; it was widely agreed it would be sensible to wait until all policy positions are clear and everything is a little more settled and certain so that the contents of the ‘pact’ are built on solid foundations. It was felt that it is important to get this right and that a ministerial commitment is not the primary driver for completing the project sooner than is helpful. It was suggested that an alternative approach could be rewriting the Caldicott Principles so that there is a parallel, public-facing version that sets expectations and standards on data: reframing, rather than introducing something new.

3.2 General Practice Data for Planning and Research 

The GPDPR check and challenge group has been put on short-term hiatus. The ambient communications campaign will be going ahead in June 2023.

3.3 NDG’s reasonable expectations project

ONDG has had its first meeting with the project’s research supplier to make introductions and discuss initial steps. Later this month, office staff will meet the project’s working group and partner programmes to start the co-design phase.

3.4 Annual Caldicott Guardian conference

The UK Caldicott Guardian Council is sponsoring the annual Caldicott Guardian conference on 23 May 2023 and the NDG and Dr Vicky Chico of the ONDG are speaking at the event.

3.5 Risk stratification and population health management

In response to the NDG’s letter to ICBs last year about ensuring an appropriate legal basis for the use of shared care record data for risk stratification and population health management activities, NHS England’s Transformation Directorate and the Health Research Authority’s Confidentiality Advisory Group (CAG) are working together to support ICBs as they work through action plans for section 251 support for risk stratification activities and separate section 251 support for population health management applications. The Office is keeping on top of conversations about this and providing support to CAG. There has been some review of ICB risk stratification activity so that their applications are accurate and reflect current practices.

4. Genomics England

Dr Natalie Banner, Director of Ethics, Dr Prabhu Arumugam, Director of Clinical data and imaging and GeL Caldicott Guardian and Will Navaie, Head of Ethics Operations at Genomics England (GEL) attended the NDG’s panel and gave a high-level presentation about several patient and clinical information access scenarios it is trying to work through, which arise because of the unique nature of Genomics England’s set up as delivering both clinical pipelines and research, and the pace of advances in genomic research. Scientists can run programmes on genome sequences to identify variants, and our understanding of these is evolving all the time: comparable to a software update that could unearth new findings beneficial to those needing care. With genomics, the data available, the way it is analysed, and the technology/tools that enable this, are constantly improving. This means that whilst no diagnoses might be possible at the point of sequencing, this could change in the future.

A discussion about ethics and confidentiality followed. It was acknowledged that direct care and research in genomics are closely related, which can be complicated: data is de-identified in the Research Environment, but in some circumstances, important insights relating to a person’s care and treatment might arise from the research conducted on their data. The conversation touched upon the consenting process for the 100,000 Genomes project and the Genomic Medicine Service, and, subsequently, patients’ expectations about how their genomic data might be used or accessed in the future. The panel welcomed the high-level discussion and said that if Genomics England wanted to draft some very specific use cases, it could offer more specific advice.

The NDG thanked Natalie, Prabhu and Will for the presentation and discussion.

5. Pre-Hospital Emergency Medicine feedback (PHEM)

Dr Vicky Chico, Senior Privacy Specialist, Office of the National Data Guardian, attended the NDG Panel to ask for feedback and determine a position on reflective practice being an integral part of direct care.

The Pre-hospital Emergency Medicine (PHEM) feedback project enables pre-hospital clinicians to access information about the outcomes of the care they provided after the crew handed the care of the patient over to the hospital team. This enables them to reflect on the assessments they made and the care they provided so they can continue to provide safe care in the pre-hospital environment.

The project has spoken to panel in the past seeking advice about the challenges it has faced in ensuring the correct legal basis for its work. They wished to enquire about the potential for PHEM to be considered direct care. The ONDG has engaged with the PHEM team over the past months. Dr Vicky Chico presented a paper for discussion; its purpose was to seek the panel’s views on whether reflective practice is an integral part of safe direct care.

In the ensuing discussion, it was recognised that every regulator of health and care professions requires professionals to be reflective practitioners in order to meet their regulatory requirements.

The discussion addressed the similarities between local clinical audit and reflective practice and considered that reflective practice might similarly have been considered an aspect of direct care if it had been directly addressed in the Information Governance Review. The panel suggested involving the healthcare regulators General Medical Council, Nursing and Midwifery Council and Health and Care Professionals Council in this discussion. Panel felt that there should be significant safeguards accompanying access to confidential patient information to reflect on the care a practitioner has delivered, in order to avoid any unintended consequences.

Although no definitive position was reached, it was agreed that Dr Chico would consider the panel’s comments, discuss the next steps with the PHEM feedback project team, and report back to the panel in the near future.

6. Any other business

No further points were raised.