Meeting minutes - April 2024

Date: 30 April 2024

Time: 10am - midday

Venue: 39 Victoria Street, Ground Floor conference Room 4 and Microsoft Teams

Chair: Head of Data Access and Linking Policy, Joint Digital Policy Unit

Dr Nicola Byrne (National Data Guardian)

Chris Carrigan (Expert Data Advisor, Use MY Data)

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

Louise Greenrod (Deputy Director - Data Policy and Digital Oversight, Joint Digital Policy Unit)

Nicola Hamilton ( Head of Understanding Patient Data)

Louis Holmes (Policy Manager, Care England)

Philippa Lynch (Senior Data Specialist, Local Government Association)

Clare Pepper ( NHS North of England Commissioning Support Unit)

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

Rachel Power (Chief Executive, Patients Association)

Policy Advisor (Data Strategy Team, Joint Digital Policy Unit)

Senior Policy Lead (Joint Digital Policy Unit)

Policy Lead (Data Strategy Team, Joint Digital Policy Unit)

Communications Manager (NHS England Transformation directorate)

Head of Digital Policy Implementation Unit (Joint Digital Policy Unit)

Senior Policy Advisor (Data Strategy Team, Joint Digital Policy Unit)

Apologies

Matt Hennessey (Regional system representative, NHS Greater Manchester)

Jacob Lant (Chief Executive, National Voices)

Actions

13.01 - Secretariate to publish February DSAP minutes.

13.02 - Secretariat to arrange a discussion on GP data at a future meeting.

Item 1: Welcome and updates

Head of Data Access and Linking Policy opened the meeting and introduced Nicola Hamilton (Head of Understanding Patient Data) to her first meeting. He explained that as Louise Greenrod was unable to attend in person, he would therefore chair this month's meeting.

The minutes of the February meeting were agreed.

Action: Secretariat to publish the minutes.

There were no comments on the action log, which was circulated before the meeting.

The Head of Data Access and Linking Policy thanked everyone who had contributed to the development of the inputs and materials for the public deliberation events. Rachel Power explained the Patients Association had been commissioned by Palantir to do work on the Foundry Platform, she offered to present the results of these findings and focus groups to this group.

Louise Greenrod (LG) provided some updates on current interest in data policy. This included:

• the value of health data (being discussed in this meeting)
• enabling better access to GP data, particularly for consented cohort studies
• supporting progress of the Data Protection and Digital Information Bill through Parliament, it was currently at Lords Committee stage. The team had a clause in this bill, to mandate information standards for providers of digital technology
• it was nearly two years since the publication of Data Saves Lives; the team were considering what might come next following the discussion with this group in December and a further discussion would be had at a future meeting
• the first public deliberation events would take place next month, and LG thanked members who were involved in the steering group for that work

In conversation, members discussed issues around GP data. They felt unclear at the future direction following pausing of GP Data for Planning and Research and the position of the GP Data Patient and Public Engagement and Communications Advisory Panel (PPECAP). Members felt it would be helpful for data to be shaped around the individual on their care pathway and less around the organisation that held data, particularly in the context of the divide between health and social care. LG explained there were a number of teams involved GP data but recognised the importance of a clear strategy and agreed it would be helpful to present an update to this group at a future meeting. The Head of Data Access and Linking Policy added that there may be a broader refresh of PPECAP.

Action: Secretariat to arrange a discussion on GP data at a future meeting.

Item 2: Approach to realising more value for NHS data access

The Senior Policy Lead (Data Access Policy) presented on current work looking at how to better realise the value of NHS data accessed for research purposes. It was noted that value can have a number of meanings, including delivering benefits to patients, improvements to the efficiency and effectiveness of the health system, improving general attractiveness of UK as a life sciences hub, and direct financial returns (which was the focus of this discussion). Previous work in this area: the framework developed by NHSX on realising the benefits for patients and the NHS where data underpins innovation, and last year’s Value Sharing Framework for NHS data partnerships.

In conversation, members raised the following points:

• this was a timely conversation and were supportive of this being a key topic at the upcoming large-scale public engagement
• it was an important issue for public trust in how health and care data was used, but that public would likely want NHS to be receiving fair value for data access
• they discussed terminology and the importance of honesty and being accurate in the language used – encouraging the use of direct language
• what the data was originally intended for and the purpose of its collection could affect public acceptance to realising value from it
• it was important to disambiguate the different ways of realising the value of data; for example IP value-sharing arrangements were very different to charging for data access or analytical services and it could be confusing to combine discussion of both
• calculating the value of data was a complex process, with difficulties in identifying the costs of creating the dataset and which needed to take account of the fact that the same piece of data could be used multiple times, for example being in different data sets

Item 3: Strategic input on approach from DSAP

Attendees were asked to set down their views on the overall approach presented, and the strategic opportunities and risks this work presented. The key themes identified were:

• the need to communicate this issue well, in particularly how to communicate complex topics clearly and simply, having absolute clarity of language and avoiding misinterpretation
• it should emphasise that this was not about new collections of data, but realising the value of data that was already being collected
• the importance of building trust, this work would not be possible without public support
• it would be helpful to frame this work as securing value, not generating income or revenue, realising the value of a shared national asset and supporting the sustainability of the health and care system
• the programme should explain the wider benefits to society and to people, and this should include benefits that are broader than simply financial ones
• concerns that discussing health data as having value could increase the risk of cyber-attacks and data breaches by presenting data as having value

Item 4: Planned public engagement on realising data value

The Communications Manager (NHS Transformation directorate) gave an update on public engagement, with a focus on the deliberations. It was noted that the first cohort (taking part in May) would specifically discuss how to return the value of NHS data as it related to the Data for Research and Development programme. Cohort 3, taking place at the end of the year, would be more future facing and include broader discussion of these issues.

In conversation, members raised the following points:

• it was important to acknowledge the existing arrangements had a cost and explain how this was accounted for currently, but also that this data was already being shared/accessed for secondary uses without the costs being recouped
• it would be useful if the questions for discussion at the deliberations were drafted in such a way to be able to bring out public feelings around this issue
• however, they noted concerns about discussing data in a transactional way given a publicly funded health system, the meeting discussed various analogies that might be used (such as how stores use data to improve services) but were concerned that none of these accounted for the difference between patients using the publicly-funded health system and individuals’ transactions with a commercial entity
• conversations should focus on the benefits of how sharing and securing the value of data benefited both individual patients and the wider health and care system, especially in terms of improved treatments and better services
• there was an assumption that educating people about this work would lead to them supporting what we wanted to do yet this might not be true

The meeting concluded with JW noting that they would shortly be working up the specification for consultancy support for this programme of work. If members were happy to be involved in shaping it, they should contact JW and team.

Item 5: Any other business / close

There were no items of any other business and JW closed the meeting.