Transparency data

Minutes of the National Data Guardian Panel Meeting, 12 September 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
• Rob Shaw
• Sam Bergin Goncalves

NDG Office staff in attendance

• Karen Swift
• Layla Heyes
• Ryan Avison
• Dr Vicky Chico

Guests

• Liesel Kennedy
• Ruth Hudson
• Nicola Hamilton
• Andrew Harvey
• Raz Edwards

1. Welcome, apologies, and declarations of interest

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

Apologies were received from Dame Moira Gibb and Dr Natalie Banner.

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 18 July 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 NDG published her blog The NHS Federated Data Platform: the importance of building bridges with the public on 24 August 2023. The NDG is working with other key stakeholders to provide advice to the programme in the run-up to the contract award. Advice has mostly focused on addressing concerns about communications and engagement with the public and professionals about the FDP, and the importance of clearly explaining how the national data opt-out will be applied to the uses of data by the platform.

3.2 Hospital to prehospital feedback

The ONDG is currently redrafting a paper it has written which proposes that reflective practice by healthcare practitioners is integral to the delivery of safe direct care. Changes were made following feedback from the General Medical Council, the Nursing and Midwifery Council and the Health and Care Professionals Council. The ONDG will bring this paper back to the NDG panel for review and further discussion once the redrafted paper is completed.

3.3 Anonymisation in IT systems

The ONDG has drafted a paper for the health and social care system that reflects how information held for care purposes by IT system suppliers is rendered anonymous for the purposes of the data controller. The purpose of the paper is to review, describe and agree the limits of current practice within the context of the legal frameworks.

The paper will be reviewed by key stakeholders before returning to the NDG panel for review and further discussion. The intention is to publish this, but first, it will need to go through the NHS England Transformation Directorate’s information governance sign-off process.

4. Understanding Population Health Management (PHM)

Ruth Hudson (Senior Programme Lead, Population Health Management, NHSE) and Liesel Kennedy (ICP Research, Information and Analysis Lead, Suffolk and North East Essex ICS) attended the NDG Panel to talk about some population health management (PHM) initiatives at Suffolk and North East Essex ICS.

PHM seeks to improve population health through data-driven planning and the delivery of proactive care to optimise health outcomes. During Liesel’s presentation, she discussed the types of initiatives that are being undertaken in this PHM programme.

Panel members considered the key themes from the presentation and made several observations. Panellists thought that the benefits of risk stratification for case finding were clear. However, demonstrating the benefits of PHM as a mechanism for resource allocation was more complex. Liesel explained that PHM uses an outcomes-based approach which focusses on the difference the programme will make in health and wellbeing outcomes for people not just the process and inputs provided by a service. Panellists thought the PHM team would need to be mindful that although there may be societal benefits, organisations should engage with local communities to ensure that they are aware of local PHM initiatives and how they use health and care data.

Ruth thought that outputs from the NDG’s Reasonable Expectations (RE) project (which is developing and testing draft transparency materials with the PHM programme team) would be very helpful in understanding how to explain PHM activities to the public in a way which is understandable.

Ruth and Liesel explained that having too much data isn’t a problem for PHM, but the quality of the data is crucial. The NHS England PHM team will need to continue to feedback to the health and care system that learning from frontline clinicians really matters.

The NDG thanked Ruth and Liesel for their clear and helpful presentation and discussion.

5. Understanding Patient Data (UPD) update

Nicola Hamilton, Head of Understanding Patient Data, attended the NDG Panel to provide an update on the organisation’s strategic direction and organisational priorities since its move to a new hosting organisation (NHS Confederation) in April 2023.          

The NDG and panellists were keen to understand more about the aims and principles of the reconstituted organisation. They thanked Nicola for attending the meeting and asked her to keep us informed of progress and get in touch if we can support them in any way.

6. SIGN network update

Andrew Harvey, Chair of the National Health and Care Strategic Information Governance Network (SIGN) and Raz Edwards, Head of Data Security & Protection/ DPO at the Royal Wolverhampton NHS Trust, attended the NDG panel to discuss the core issues impacting frontline information governance professionals. Andrew is leaving the role of SIGN chair, and Raz Edwards will replace him. The ONDG has set up regular meetings with Raz to understand the issues that are the most pressing for frontline information governance professionals.

7. Any other business

No items were raised by panel members in advance of the meeting.