Meeting minutes - September 2024

Date: 17 September 2024

Time: 10am - 12:30pm

Venue: Hybrid

Chair: Louise Greenrod, Deputy Director - Data Policy

Dr Nicola Byrne (National Data Guardian)

Chris Carrigan (Expert Data Advisor, Use MY Data)

Martyn Green (Chief Executive, Care England)

Nicola Hamilton ( Head of Understanding Patient Data)

Philippa Lynch (Senior Data Specialist, Local Government Association)

Rachel Power (Chief Executive, Patients Association)

Apologies

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

Jacob Lant (Chief Executive, National Voices)

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

Actions

14.01 - Secretariat to amend minutes of April meeting as requested.

14.02 - Secretariat to share a link to the Patients Association’s guide to Foundry, once it is published.

14.03 - Secretariat to arrange a discussion on the findings of cohort 2 of public engagement to a future meeting.

Item 1: Welcome and updates

Louise Greenrod (LG) welcomed people to the meeting. She noted that Louis Holmes had left Care England, Martyn Green was attending in his place until a successor was appointed.

LG asked if there were any comments on the draft minutes of the previous meeting. Nicola Byrne asked for 2 minor amendments for clarity. There were no other comments.

Action: Secretariat to amend minutes as requested.

Rachel Power said that the Patients Association would shortly be launching a new animated guide to Palantir’s Foundry software and would share a link with the group once it was live.

Action: Secretariat to share a link to the Patients Association’s guide to Foundry, once it is published.

Item 2: Setting the scene

LG began with an overview of events since the general election and formation of the new government in July. She noted that data was clearly crucial to delivering the new ministers’ priorities for the NHS, this included Secretary of State’s statement that one of the shifts the NHS needed to undergo was “from analogue to digital”. She expected detailed deliverables to be set through the process of developing the Ten-Year Plan, which would take place over the next 6 months.

The Secretary of State for Science, Innovation and Technology had also spoken on the importance of data. Labour had committed to the creation of a National Data Library in their election manifesto. DHSC officials would be engaging with DSIT about the role of health data within this.

The Joint Head of Data Strategy then ran through the expected timelines for the Spending Review: there would be a one year review, setting departmental budgets, to be announced alongside the Budget at the end of October. This would be followed by a comprehensive multi-year spending review, which would conclude in spring 2025. The government had committed to holding a spending review every 2 years after that.

The Joint Head explained that officials in the Data Policy Team had worked on several potential policy ideas as part of the election preparation work and ran through these. He emphasised they were not government policy but could inform our response to ministerial requests to improve the sharing and use of data to benefit the public and health and care system.

In conversation, the following points were made:

• It was very important that public health and social care data were considered in future opportunities for data, to enable a full view of healthcare needs, alongside understanding the social determinants of health. The discussion felt very focused on healthcare but we should be interested in health, which was broader in scope.
• Currently a lot of data was collected but it was not always used effectively, the goal should be to use existing data more effectively rather than collecting more. We also needed to understand what data was relevant to measuring what we wanted to achieve, and be careful about incentivising the wrong things. Ideally, we should look to rationalise data collections.
• There was frustration that much data that was collected was not publicly available. Whilst progress had been made on enabling patient access to their GP record, access to other medical records was very limited and many other datasets (for example, surgical outcomes) were not publicly available.
• Members considered how to prioritise the list of ideas presented, although the first Joint Head of the Data Strategy Team emphasised that the list was designed as a prompt for officials to consider what we wanted to achieve in the data space rather than a finished set of policy ideas. Members felt it was helpful to focus on the changes that people wanted to see, and to leverage their support for change; therefore we should take the lead from outcomes of the public deliberation. Members felt there should be more engagement with the public and argued for partnering with patients and the public to develop and deliver policies and improve the use of data in health and care. We needed to make the public believe that the use of their data would make a difference, tapping the same vein of altruism that led people to join clinical trials. However, previous research showed there were hard to reach groups that might distrust the official use (or collection) of their data that we should consider (the current programme of large-scale engagement included hard-to-reach groups).
• It was also noted that it would be helpful to more clearly set out the overarching goal that individual ideas were intended to achieve, and that each should have a clear problem statement. It was helpful to bring out more clearly that the ideas were interconnected and that achieving one may require delivering some of the others.

Item 3: Linking of primary and secondary care data part 1 - what is the ideal end-state that we should be seeking to achieve in this space?

The second Joint Head of Data Strategy Team led on this item. Policy discussions around enabling better access to and sharing of data in GP records had developed into conversations about how we could bring together information from primary and secondary care about individuals and the potential of a single patient record. This issue would be covered in the next cohort of public engagement, and ministers had emphasised the importance of working with the public and the GP profession as we developed ideas in this space.

DSAP members were asked for their views on what our long term vision could be. The following points were made:

• It was important to focus the discussion around the individual since while information was held by different providers, it was about the individual themselves.
• There were a variety of objectives depending on the focus: for example, improving direct care could mean enabling clinicians to see a person’s entire medical history when treating them, whereas from a research perspective it was important to have full information on a cohort of the population. These might require different technical solutions (for example, data for research should be accessed through a secure data environment). Members noted that resolving the challenges to sharing data to support direct care was an obvious step (and very relevant to people as they directly experienced the issues that separate care records caused), this would be difficult. Some of the other use cases might be easier to solve but this should not be at the expense of a solution to support direct care.
• Members highlighted the importance of the public advocating for a single record. It was felt that sometimes providers saw themselves as a gatekeeper to enable or prevent the sharing of data, which needed discussing with the public to determine their views (whilst recognising organisations’ legal role as a data controller).
• Finally, the importance of interoperability and having a set of clear, consistent and mandated information of standards was mentioned. There was a range of electronic patient record systems with different configurations, which could make sharing of data difficult, and interoperability was crucial to resolving this. The health measures included in the Department of Science and Technology’s Data Access and Use Bill, which would be a key enabler.

Item 4: Linking of primary and secondary care data part 2 - what are the trade-offs or questions are that need to be resolved as part of this work?

The second Joint Head of Data Strategy Team then talked through some of the trade-offs, or the various dimensions on which a solution could lie, that the team had identified. For example, should solutions be developed at a national level or be developed at a local or regional level? DSAP members were asked for their views.

In response, members commented:

• They were concerned that using the term “trade-offs” indicated that there were binary choices to be made, when in reality the alternatives presented might not be mutually exclusive (“x and y” instead of “x or y”). For example, a solution did not have to be national or local. The team explained that the trade-offs were not designed to identify a ‘right’ answer but were designed to start a conversation on what the solution could look like.
• Part of the discussion focussed on whether a refreshed strategy was needed for data. Members noted that the Data Saves Lives strategy was produced under the previous government, but felt its recommendations remained very relevant and were not yet achieved in full. Therefore, they felt implementation of the core commitments should continue, while considering how they support the new government’s objectives and what other opportunities there may be. Members felt that developing an entirely new stand-alone, data-specific strategy would be too much of a distraction although they also noted that Lord Darzi’s review set out the challenges that remained around better use of data in the NHS and that the 10 Year Plan would set out this government’s approach.
• The meeting discussed broader issues that would need to be considered as part of delivery: cost and/or complexity and how much risk was acceptable (for example low risk but limited functionality as opposed to higher risk but greater functionality).
• It was noted some of the issues identified were very technical (for example, federation vs a single solution, or developing solutions in-house vs market procurement). Whilst these were important in delivering a solution, the group felt that patients and staff were most interested in functionality and the choices around functionality should be the focus in engagement with the public. Most people wanted technology and solutions that just worked and were less interested in how it did so (members also noted that there could be an interest in who profited from providing solutions, although even here the interest was in whether the benefit was worth the cost).

LG concluded the conversation by stating it would be important to reconsider these questions once we’d heard views from the public via engagement. She committed to bringing back the results of the next cohort of public engagement.

Action: Secretariat to arrange a discussion on the findings of cohort 2 of public engagement at a future meeting.

Item 5: Any other business / close

There were no items of any other business. The next meeting was scheduled for 26 November 2024 at 10:30am.