Meeting minutes - March 2025

Date: 4 March 2025

Time: 13:00-15:45

Venue: Wellington House/Teams call

Chair: Louise Greenrod, Deputy Director - Data Policy

Nicola Byrne (National Data Guardian)

Chris Carrigan (Expert Advisor, Use My Data)

Matt Hennessy (Chief Intelligence and Analytics Officer, NHS Greater Manchester)

Philippa Lynch (Senior Data Specialist, Local Government Association)

Nicola Perrin (Chief Executive, Association of Medical Research Charities)

Head of Data Policy Team (Joint Head of Data Strategy, Digital Policy Unit)

Head of Data and Energy (Head of Data and Energy Affordability Support, Department for Energy Security and Net Zero)

Apologies

Dr Jeanette Dickson (Chair, Academy of Medical Royal Colleges)

Martin Green (CEO, Care England)

Jacob Lant (Chief Executive, National Voices)

Rachel Power (Chief Executive, Patient’s Association)

Actions

There were no specific actions noted at this meeting.

Item 1: Welcome and updates

Louise Greenrod (LG) welcomed everyone to the meeting and shared that Nicola Hamilton had moved on from Understanding Patient Data. Her successor, Anna Steere, would be invited to join future meetings.

LG provided updates on actions from previous meetings. One action remained outstanding from the September meeting; the draft report from cohort 2 of our public engagement had been shared with the Public Engagement Steering Group. A conversation on the policy implications for later in the year would be arranged. LG also noted the action from the last meeting on scheduling a discussion on the Spending Review (SR). This would be scheduled when outcomes of the10YP and SR were clearer.

The minutes of the previous meeting (November 24) were agreed.

Item 2: General update on data priorities and discussion

LG updated the Panel on events since the last meeting in November.

The Secretary of State had announced a reorganisation of functions between the Department of Health and Social Care and NHS England, with a focus on streamlining processes and reducing duplication; details of the extent and how this would be done were yet to be confirmed. Tom Kibasi had been appointed to lead the drafting of the 10 Year Plan, which would set out the Government’s long-term plans for the NHS. Themes that could emerge on the data element were getting the foundations right: modernising infrastructure, improving interoperability, and future-proofing technology.

Public engagement continued; cohort 3 looking at the opt out landscape was underway. There was a desire to put engagement on a sustainable long-term footing, subject to the outcome of the SR. LG finished by setting out some areas of legislative reform that were being considered (alongside the Data (Use and Access) Bill, including long-planned: reform of the Health Service (Control of Public Information) Regulations. They also noted some disconnect between national and local strategies around the use of health data. Specifically, members highlighted some confusion around the long-term strategy for platforms and plans for the Health Data Research Service in particular. LG noted that the 10 Year Plan and SR outcomes would settle long-term data and digital strategy in more detail including HDRS, we would provide an update on HDRS at a future meeting.

Item 3: Introduction and background - the linking of health and non-health data

Head of Data Policy Team introduced the session by providing background on the linking of health and non-health data and outlining its structure. The discussion was intended as an early strategic conversation on the policy approach to the linking of health and non-health data, offering an opportunity to challenge and provide feedback on initial ideas.

Head of Data Policy Team set out the current ad hoc approach to data linking across government departments and the need for a more structured policy framework. This might cover three tiers - improving joined up access to data for individuals to support access to public services, which could make those services more efficient (Tier 1);the linking of de-identified population-level datasets for trend analysis and targeted interventions (with the possibility of re-identification) (Tier 2); and linking fully anonymised national datasets for research and policy development (Tier 3). Questions were discussed relating to the legal basis for linking data, technical solutions and the importance of public trust.

In conversation, members discussed the relative difficulties of achieving data linking in each of the three tiers. Tier 1 might be the easiest to achieve technically but could be the most sensitive due to its direct impact on individuals. Tier 3, though technically complex, could be more acceptable to the public. Members also highlighted that successful data linking would require positive outcomes across all three dimensions as there were independencies between them - public engagement on the balance of privacy, security, and usability would be important for future policy decisions.

In relation to the three dimensions, members raised the following points:

• For legislation, the need for a holistic, person-centred approach to data, prioritising wellbeing rather than rigidly categorising services as health or non-health.
• On technical, members felt retaining health data within a health environment may align with public expectations, but noted there were nuances; for example, strong governance and decision-making arrangements could help ease concerns about access in non-health environments. Members agreed that the specific technology or platform used was less important than ensuring the right functionality, interoperability, and common data standards.
• On trust and confidence, it was important that the health and care system made sure its own arrangements met high standards before expanding into non-health uses. They discussed whether public support would be more likely if initiatives provided clear personal benefits to individuals, such as simplifying processes, but it was important to engage with the relevant parts of the population. When considering process changes, it was important to differentiate between policy administration and the policy itself.

Item 4: Discussion: proposal on the linking of health and non-health data for targeted energy subsidies

The group reviewed two initiatives (one live, one proposed), which illustrated the opportunities, challenges and balance involved.

Matt Hennessy (MH) described how Greater Manchester ICS had managed the complexities of linking health and non-health data, emphasising the need to first integrate health and care data properly before attempting broader connections. He highlighted challenges with issues such as duplicated identities, different data models, and legal constraints around privacy and governance. He also discussed the growing demands on storage and computing, particularly with new data types like genomics and real-time monitoring.

Head of Data and Energy then spoke from the national perspective on developing policy around energy bill support. The team from the Department for Energy Security and Net Zero were developing policy for what could follow the Warm Home Discount Scheme following its expiry in 2026. They were considering options that could lead to support for a wider range of households, particularly those with health conditions that required greater energy use, either medical conditions with greater vulnerability to the cold or that required the use of electrical medical equipment.

In discussion on the energy bill support example, members made the following points:

• Policy decisions would shape data requirements, it was important to have clarity on the use cases and understand how constraints would impact the final approach.
• Thinking of the principle of data minimisation, they asked if health data was necessary to deliver support and, if it was, that there could be range of options for appropriate data sources. The importance of having evidence (or at the least a clear logic model that could be tested) to justify interventions that required linked data.
• Communication to the public was also important, particularly if linking health data would lead to an intervention from a non-health service.

LG closed the discussion by thanking the speakers for their presentations, and offered to share any further comments on the DESNZ policy proposals with AC should members wish to email and further suggestions.

Item 5: Any other business

There were no items of any other business. The next meeting was planned for May or June, to align with announcements around the 10-Year Plan and Spending Review.