Unlocking Value of Data Strategic Advisory Group minutes: May 2025

Attendees and apologies

• Eilidh Mclaughlin (EM), Chair, Deputy Director, Digital Ethics, Inclusion and Assurance SG
• Chris Bergin (CB), UVOD Secretariat, SG Digital Directorate
• Alan Martin (AM), UVOD Secretariat, SG Digital Directorate
• Carol Sinclair (CS), Chair, Health and Social Care Data Board
• Ryan Anderson (RA), Policy Team Leader, Data Intelligence, SG Health
• Lisa Hill (LH), Head of Information Governance, SG Health
• Tom Barlow (TB), Senior Research Manager, SG Health
• Suresh Kumar (SK), Deputy Director, Innovation and Industrial Transformation
• Colin MacCowan (CM), Professor in Health Data Science, University of St Andrews
• Mark Cook (MC), Co-chair of the Life Sciences Industry Leadership Group
• Suzie Ali-Hassan (SAH), International Business Director, The Association of British HealthTech Industries (ABHI)
• Octavia Field Reid (OFR), Associate Director for Public Participation and Research Practice, Ada Lovelace Institute
• Alison Hamilton (AH), Manager, West of Scotland Safe Haven
• Ruth Campbell (RC), Associate Director, NHS National Services Scotland (NSS)
• Dr Cathy Kelly (CK), Digital and Information Services, NHS Borders
• Caleb Meath (CM), The Association of the British Pharmaceutical Industry (ABPI)

Apologies

• Albert King, Chief Data Officer, NSS
• Jim Squires, Head of Data and Digital Policy, ABPI

Guest speaker

• Roger Halliday (RH), Chief Executive, Research Data Scotland

Items and actions

Welcome and arrivals

EM welcomed group members to the meeting and thanked them for agreeing to join the group. She also acknowledged their enthusiasm in responding to the invitation to contribute to this agenda.

Introductions

EM invited group members to introduce themselves and to provide a brief explanation of their interest in this programme of work.

This Strategic Advisory Group (SAG) has been established to provide strategic guidance, oversight and challenge to inform the delivery of the Scottish Government (SG)’s Unlocking the Value of Data programme (UVOD). EM highlighted that the collective experience and expertise of this cross-sector, multi-disciplinary group would be an invaluable asset to the programme as it develops.

As Senior Responsible Owner (SRO) for the UVOD programme, EM would chair meetings of the SAG.

Overview of the UVOD programme

EM explained the purpose of the UVOD programme and the strategic context for this work.

Key points:

• the UVOD programme evolves from Digital Strategy for Scotland and aligns with the Health and Social Care Data Strategy in advancing ethical approaches to data
• it supports the SG’s ambition for Scotland to become an exemplar in the trustworthy, ethical and inclusive use of data and technology, maximising its potential to transform public services and drive growth, whilst mitigating harms
• the premise for the programme is that public sector personal data is an asset that, if used ethically and in publicly-supported ways, can support economic growth and drive innovations in health, social care and wider public services
• the purpose of the programme is to support the public sector to responsibly unlock the value of their personal datasets, for ethical innovation and research by the private sector, in the public interest
• while access to personal data under certain circumstances is permissible under UK data protection legislation, the aim is to develop ethical best practice approaches to aid decision-making in the public sector, in line with the highest legal and ethical standards

EM invited CB to give a short presentation on the background to the UVOD programme.

This overview covered: the original landscape review (which identified the case for action); the creation and outputs of the Independent Expert Group (IEG); stakeholder and public engagement undertaken; and the collation of the evidence base, which informed the SG’s statement of policy on industry access to public sector personal data, and endorsement of the IEG’s recommended overarching principles, in January 2025.

Key points:

• the programme has been driven by feedback from scottish public sector data controllers, who identified the need for support to guide decision-making when managing requests for personal data access by the private sector
• in January 2025, the SG set out its overarching policy on private sector access to public sector personal data, in its response to the final report by the SG-commissioned IEG
• the IEG was established to provide strategic direction and oversight of the UVOD programme, during its foundational stage (March 2022 - April 2023). The group was chaired by Professor Angela Daly, of the University of Dundee
• an RDS-led review of operational practice in 2023, on behalf of Scottish Ministers, also highlighted a lack of clarity and inconsistencies in relation to industry access to public sector data
• the SG has also published a range of supporting evidence. The evidence demonstrates conditional public support for private sector use of public sector data, with public benefit constituting the primary driver of acceptability

Presentation

Strategic advisory group: terms of reference

In discussion, the following points were made:

• the terms of reference (ToR) covers the role, remit, membership and lifecycle of the group
• the current governance and sub-governance arrangements for the programme were agreed by the Health and Social Care Data Board, at their meeting in February 2025
• the board has agreed to fulfil this function as the programme’s focus is predominantly on health data, at this stage
• the longer-term aim is to shift the focus to encompass non-health personal data, in line with the programme’s pan-public sector scope, at which point the governance will be reviewed. Following this, the ToR would be adapted and membership refreshed accordingly
• the remit of the advisory group will include consideration of the ongoing, active role of the public in the delivery of governance models and programme outputs
• part of the role of this group is to help identify opportunities for collaboration, and to advise on how we build this pipeline of projects/initiatives to test and validate SG policy, in this space
• the proposed meeting cycle for the group will be reviewed to ensure it can deliver optimal support for the programme
• the programme’s current focus on benefit-sharing has highlighted the need for procurement to be part of the discussion
• it was clarified that the purpose of the group included shaping the future direction of the programme, as well as providing strategic advice and challenge
• future meetings of the group could potentially be thematically-focused (e.g. benefit-sharing), or could consider specific practical cases of data access/usage
• it was suggested the scope of the group could include how to improve data access for industry, for non-research purposes
• outputs from the work of the SAG will be published on the UVOD web section of the SG website

A wider discussion prompted the following points:

• while existing processes permit access to personal data in certain circumstances, we need a better understanding of what is not working well: the challenges, constraints and inconsistencies associated with current governance and approvals processes
• industry is looking for progress to be made quickly: there is an urgency to initiate evidence-led activities that demonstrate secure, faster, simplified data access for research and ethical innovation and benefit-sharing
• the remit for the SAG includes helping to identify potential health - and non-heath - use cases for industry access to data, to unlock public benefit from commercial access to personal data, for ethical use within a secure environment
• the group was informed about the approach taken by NHS England, including the Value Sharing Framework for NHS data partnerships 
• the SG policy statement states that access to public sector personal data must be contingent on demonstrable public benefit associated with is use. It was suggested that research is, for the most part, about finding out what is not known. It is often difficult, therefore, to demonstrate public benefit up front. It may be more appropriate to consider data access as being contingent on some realistic expectation of/potential for public benefit
• one model of benefit-sharing is a public sector organisation retaining an IP interest in a product being developed by industry. However, this model may not be an attractive proposition for industry taking financial risks to develop a product on the anticipation it is profitable later
• other benefit-sharing models might be considered e.g. industry paying up-front for access, so the public sector can benefit at that stage, but without retaining an ongoing interest. An ongoing interest might be challenging to manage and account for in a proportionate way, particularly at the earliest stages of product development. The policy statement will be kept under review, and possibly updated, as the work progresses
• when asked if there was a core set of principles that set parameters to guide UVOD projects, it was highlighted that the outputs produced by the IEG included a set of guiding principles (pages 24-33 of the IEG final report). These seven principles were co-created with expert stakeholders and the public
• the UVOD programme will seek to develop use cases to apply and validate these guiding principles
• the IEG advised these principles “should be subject to routine review and ongoing monitoring through deliberation with the general public, public sector, private sector and third sector stakeholders, academic and other experts, in Scotland and elsewhere, to reflect developments in evidence, technology and practice”

APs:

• consider how the governance structure could be developed in order to ‘future-proof’ the ToR. (UVOD secretariat)
• consider the frequency of SAG meetings and the possibility of thematic meetings. (UVOD secretariat/group)
• include an agenda item on challenges to personal data access by industry for public benefit (i.e. ‘what is not currently working well’) at a future meeting of the group. (UVOD secretariat)
• consider how SG procurement could contribute to the development of the UVOD programme. (UVOD secretariat)
• engage with NHS England contacts to learn lessons from the UK approach, building on previous engagement. (UVOD secretariat)

RDS operational framework

EM invited RH to explain how RDS, in conjunction with SG and the Safe Haven Network, is delivering the first UVOD project identified for delivery.

RH explained the context and background to the RDS-led operational framework, illustrating how RDS, SG, NHS Scotland, academia and industry partners are working together to facilitate faster, secure access to deidentified case-level health data, for the purpose of research in the public interest.

Presentation:

Points raised in discussion:

• the presentation drew parallels with the experience in NHS England, in particular regarding the lack of standardisation and the need to simplify the process as much as possible
• regarding the lack of standardisation, it was highlighted that differences in funding can lead to different approaches being taken
• the operational framework has identified a process to efficiently facilitate the safe and secure access to data, within a Trusted Research Environment (TRE)
• cross-sector and public engagement has been a vital component underpinning the development of the framework
• RH shared the emerging findings from the RDS-led deliberative public engagement with the group

Summary of the RoboScot initiative

EM invited CB to provide an overview of the second UVOD project identified for the current stage of the programme

Key points included:

• this collaborative project (SG/NSS/PHS) directly addresses a key recommendation of the IEG, who advocated for appropriate benefit-sharing models to be adopted
• this project seeks to build and deploy a robotic surgery intelligence platform using diagnostic and surgical outcomes data to evaluate outcomes from robotic surgery
• anticipated public benefits of this data use are: better outcomes for patients through the use of the robotic devices, and better value for taxpayers’ money
• this innovative project will create an environment for NHS Scotland to work collaboratively with industry partner(s), at a grassroots level, linking data from robotic surgery devices with patient and outcomes data. It will enable industry partner(s) to bring their subject matter expertise to the analysis of this data, within an environment geared to unlocking high-value insights
• NHS data would be kept within NHS platforms or a TRE, and not shared out-with these environments
• this project can demonstrate innovation in public services and product development through ethical data use by a commercial partner
• Project origins: An earlier iteration of the NHS-led project resulted in a bid for Chief Scientist Office Health Research Programme funding, in 2023 (which was ultimately unsuccessful)

Presentation:

Realising the art of the possible

EM explained that this item was designed to stimulate a free-flowing discussion to draw out members’ perspectives and views about what can be done in this space, within SG policy parameters. A set of questions had been shared with group members in advance of the meeting, for them to consider.

First question: How do we create the conditions for ethical innovation using public sector personal data, for the benefit of wider society? Do you have knowledge of existing good practice?

Points raised in discussion:

• it was acknowledged that good news stories will not be highlighted. The converse is true for safety breaches/process failures
• the Scottish Safe Havens’ adherence to the highest standards is exemplified by the absence of such breaches
• the fact that strong compliance with robust (legal and information governance) safeguards protects personal data needs to be communicated clearly to the public
• the Scottish Information Linkage Collaboration has produced a repository of positive stories which could be updated and deployed as appropriate
• a public sector project to produce a register of benefits, deriving from the use of public sector data, was referenced
• there may be the potential to expand a register of benefits to align with an information assets register held by the public sector. This could demonstrate a correlation between the deployment of assets and public benefit
• a project to make information assets publicly available is being progressed, under the auspices of the Health and Social Care Data Board
• the group could draw on the expertise of the Innovative Health Care Delivery programme and seek alignment with this programme
• the UK Connected Heath Cities Programme, a civic partnership (between NHS England, local government, academia, and the public) piloted in four city regions, tested the methodology of health systems informed by analysis of routinely-collected health data. This informed decision-making in England and could influence approaches taken in Scotland
• the need to invest in meaningful public engagement was underscored (this should also involve people who are affected by the outcomes)
• the question ‘is UVOD a programme?’ (with start and end dates, workstreams, milestones etc) was raised
• the health-centric nature of the UVOD programme was questioned. As the programme is taking an evidence-led approach, health is the natural starting point for this work. Never-the-less, it will be important to develop a pipeline of future use cases, including non-health data. The scope of the programme’s ambit could extend to other sectors, for example transport and housing

Due to time constraints, EM suggested the remaining questions, below, be issued for a written response by group members. The questions and corresponding feedback could be discussed at the next meeting.

• How do we secure a more consistent, higher risk appetite among data controllers, in order to secure public benefits currently not achievable because of limitations?
• How do we ensure that the benefits of data access can accrue to the public sector, as well as commercial enterprises?
• What else could be done to support secure private sector access to public sector personal data for public good? (Lack of industry engagement in the work of UVOD was highlighted during the programme’s foundational stage.)
• How do we achieve our desired outcomes from a policy standpoint, and how else could we support that?

APs:

• consider the remaining questions above, and provide feedback by correspondence (All)

Any other business

It was suggested that enhanced industry representation in the sub-governance for the UVOD programme would be worthwhile.

Members will be informed of the date of the next meeting in due course. In the meantime, there are opportunities to engage directly with the programme and share insights, which they can do by contacting Christopher.bergin@gov.scot.

EM closed the meeting and thanked members for their participation.

The next meeting of the group will be held on 21 August 2025.

Action points: summary

• AP1 Consider how the governance structure could be developed in order to ‘future-proof’ the ToR. (UVOD secretariat)
• AP2 Consider the frequency of SAG meetings and the possibility of thematic meetings. (UVOD secretariat/group members)
• AP3 Include an agenda item on challenges to personal data access by industry for public benefit (i.e. ‘what is not currently working well”) at a future meeting of the group. (UVOD secretariat)
• AP4 Consider how SG procurement could contribute to the development of the UVOD programme. (UVOD secretariat)
• AP5 Engage with NHS England contacts to learn lessons from the UK approach, building on previous engagement. (UVOD secretariat)
• AP6 Consider the remaining questions, and provide feedback by correspondence. (all members)