Public dialogue on data sharing outside of the public sector in Scotland
The Scottish Government commissioned a public dialogue to explore the concept of public benefit, and specifically the extent to which data sharing outside of the public sector is in the public benefit. This report builds on the findings from the public dialogue on the use of data in Scotland.
Introduction
Background
In late 2022, the Scottish Government and its partners from Research Data Scotland, the Digital Health and Care Directorate and Sciencewise convened a public panel to explore the ethics of public sector use of data. The purpose of the panel was to inform approaches to data use by the Scottish Government and public sector agencies in Scotland.
Using a deliberative public dialogue approach, facilitated by Ipsos, the panel (consisting of 25 people from across Scotland) met over six three-hour online workshops to answer the question: What guidelines should the public sector follow when using citizens' data? The panel listened to presentations from experts, learned about the issues, discussed them, and then drew conclusions together to form a set of ethical guidelines. A copy of the guidelines is included in appendix A, while the full report of the findings can be found on the Scottish Government website.
Over the course of the original workshops, some issues arose that were not covered in great detail but that the panel deemed necessary for the public sector in Scotland to consider when using data about citizens. This included the concept of public benefit, and specifically the extent to which data sharing outside of the public sector (for example, with private or third sector organisations) is in the public benefit. This was important to the panel but there was limited time and opportunity to explore in depth what this meant to the participants.
The Scottish Government, in partnership with Research Data Scotland and Sciencewise, therefore commissioned Ipsos to facilitate two additional workshops with participants who took part in the original panel to explore these issues further. This report summarises the key findings from the additional workshops. It should be read in the context of, and as an addition to, the wider report from the original workshops.
Research aims and methodology
The aim of the two additional workshops was to explore views on the following overarching questions:
- When might data sharing be in the public benefit, and when it is not?
- What are the benefits of data being shared outside of the public sector?
- When data are shared, who should benefit?
Ipsos designed and facilitated two additional sessions that members of the original panel were invited to. Of the original panel, 20 members expressed an interest to continue being part of the panel (and gave permission for their details to be retained for this purpose). Of those invited, 15 returned for additional meetings which took place in March 2023.
The two online workshops followed a similar structure to the original panel sessions. Participants listened to presentations from experts (including representatives of data sharing projects and speakers that raised ethical considerations about data sharing), learned about the topics (private and third sector use of data, benefit sharing as a way of ensuring public benefit, and ethics of data sharing) and then discussed the issues together before reaching conclusions. The workshops also provided the panel with the opportunity to review and comment on the final ethical guidelines they had developed in the original workshops.
The overall structure and content of the workshops is summarised in figure 1.1 overleaf. Further details about the sessions (including an overview of each session with dates, times, content and specialists) can be found in appendix B.
Session 1 |
Session 2 |
|
|---|---|---|
Content |
Welcome back in plenary Discussion in groups: Review of ethical guidelines Initial views on data sharing Presentation in plenary on private sector use of data Discussion in groups: Reflections and discussion on private sector use of data Presentation in plenary on benefit sharing Discussion in groups: Reflections and discussion on benefit sharing Q&A in plenary Discussion in groups on topics covered in first session |
Recap on session 1 in plenary Presentations in plenary from representatives of data sharing projects Discussion in groups: Views of projects (overall sentiment), discussion around benefits and risks (including who benefits and how) Q&A in plenary Presentation in plenary from patient representative group Presentation in plenary on ethics of data sharing Discussion in groups: Thoughts on presentations, shifts (if any) in views, new issues emerging Q&A in plenary Discussion in groups: Focused discussion and conclusions on key questions 1 – When data sharing is in the public benefit, and when it is not? 2 – What benefits? 3 – Who should benefit? |
The workshops were funded and guided by the Scottish Government in partnership with Research Data Scotland and by UK Research and Innovation's Sciencewise programme, an internationally recognised public engagement programme which enables policy makers to develop socially informed policy. An oversight group – comprising representatives from the Scottish Government, Research Data Scotland, and independent experts from academia and civil society – met in March 2023 to advise on the additional workshops. Details of the oversight group are provided in the full report from the original workshops.
Contact
Email: michaela.omelkova@gov.scot
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