This report presents the findings from a public dialogue on the use of data in Scotland commissioned by the Scottish Government to explore the ethics of data-led projects. The purpose of the panel was to inform approaches to data use by the Scottish Government and public sector agencies in Scotland.
Introduction
Background
The Scottish Government has stated a commitment to using data and digital technologies in an ethical way for the benefit of the people of Scotland.
During the pandemic the Data and Intelligence Network (DIN) was set up by the Scottish Government as a dedicated team, providing additional capabilities to ensure that data were utilised effectively and ethically to address key challenges relating to COVID-19. The DIN operated from within the Scottish Government, providing skills and expertise to a wide range of organisations across Scotland's public sector and providing support with their data-led projects at the height of the COVID-19 pandemic. The projects that the DIN advised on presented ethical dilemmas in how to reconcile the privacy, rights and freedoms of people in Scotland with rapid, proactive, and responsible use of information. The need for urgent and decisive action during the COVID-19 pandemic meant that data-led projects were fast-tracked to implementation, and the opportunities for consideration of public views on the social and ethical implications of the data use were limited.
In an increasingly data driven world, good governance is required to ensure public data are used effectively, ethically and appropriately. Engaging the public - those whose data is used in research, planning and service development and delivery - helps to develop trustworthy and robust frameworks for how government and other agencies collect, analyse and use data. Public engagement can take many forms and have multiple purposes, but an overriding aim is to promote better policy and decision making, often through deliberative engagement.
The Scottish Government, together with Research Data Scotland (RDS), decided to build on the work done by the DIN which had started to expose some of the ethical challenges of data-led projects. The Scottish Government and RDS agreed to convene a public panel to explore the ethics of past data-led projects supported by the DIN, and possible future projects to inform approaches to data use by the Scottish Government and public sector agencies in Scotland.
Research objectives
The aim of this public panel was to explore perceptions and understanding of public sector data-led projects in order to produce a set of ethical guidelines that the Scottish Government and public sector organisations should follow when using data about citizens. The key research objectives of the panel itself were to explore:
- Public perception and understanding of public sector data-led projects (involving different types of data including anonymised or identifiable records from NHS health data, census data, education data, housing data, and location data).
- Levels of public trust in different methodologies to ensure privacy of individuals' data.
Broader objectives of the project were to:
- Drive an increase in the amount of public engagement on data use taking place across the public sector by introducing and involving a range members from the DIN Network in the design and delivery of the project.
- Create a blueprint for a long-term, sustainable forum for engaging and involving the public in data policy, scrutiny and decisions.
The public dialogue reported here builds on previous public engagements in Scotland on the use of data (key insights from which are summarised in appendix A).
Methodology
Ipsos, along with its partners at the University of Edinburgh, designed and facilitated a public panel that was funded and guided by the Scottish Government and UK Research and Innovation's Sciencewise programme, an internationally recognised public engagement programme which enables policy makers to develop socially informed policy. The specific methodology used with the public panel is known as a “public dialogue”. Public dialogue is a process during which members of the public interact with scientists, stakeholders and policy makers to deliberate on issues relevant to future policy and research decisions.
The panel brought together a group of 25 people from across Scotland to learn about the topic of data use by the Scottish Government and public sector agencies. The panel met over six three-hour online workshops between September and December 2022 to answer the following key question:
What guidelines should the public sector follow when using citizens' data?
Over the course of the public dialogue, participants reviewed different data-led projects that the DIN had been involved in previously or were considering involvement in. 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 which are presented in this report.
Further details about the process (including an overview of each session with dates, times, content and specialists) can be found in appendix D but the overarching design of the dialogue is summarised in figure 1.2 below.
Figure 1.2: Structure of the public dialogue
Alongside the online meetings, an online community helped support ongoing engagement with panellists, facilitating continued discussion and reflection.
Oversight
An oversight group - comprising Scottish Government representatives, Research Data Scotland representatives, and independent experts from academia and civil society - met regularly to advise on the methodology. The oversight group provided checks and challenges over the course of the project to ensure the design of the panel was appropriate, relevant and robust. A list of oversight group members and meeting times is detailed in appendix B.
Sampling and recruitment
Participants were recruited using a civic lottery approach, which involves inviting a random selection of households to participate. They were recruited to be broadly reflective of the Scottish population in terms of age, gender, region, ethnicity, disability and education. Ethnic minority groups were over-sampled to ensure sufficient representation of these groups. An attitudinal measure was also included in the selection process to ensure a range of views were represented in terms of trust in the Scottish Government and public sector agencies to use data for the public good. The recruitment process is outlined in more detail in appendix C.
Overall, 30 people were selected to join the panel and 25 participated throughout. A table summarising the demographic profile of the final selected and confirmed sample can be found in appendix C.
To support and enable participation in all workshops, participants were each paid £400 for joining the online sessions and online community. Where necessary, participants were provided with equipment, such as headsets, laptops or internet dongles and were supported with training on how to use the technology and access the meeting platform.
Materials and input from specialists
Discussion guides and stimulus materials were developed by Ipsos and reviewed by the Scottish Government, Sciencewise and the oversight group. A range of specialists joined at different points in the dialogue to provide information that would be useful for participants' learning and deliberation. In the first session, specialists included academics and professionals who explained key concepts to support participants' discussions (including the role of the DIN, the legal context of data use and an introduction to data ethics). In the following sessions, those involved in the data-led projects being reviewed by the panel provided overviews of these, while academics and representatives from independent research institutes provided alternative perspectives on the projects to help participants consider different views on the use of data about citizens.
Presentations were either delivered live or recorded in advance and played live during the sessions. Some specialists presented in plenary and then stayed to answer questions that arose during breakout discussions. Others presented in smaller groups, remaining in the groups afterwards to take questions directly from participants. Any questions that were not answered during the live sessions were compiled in a Question and Answer (Q&A) document (see appendix E).
Interpretation of qualitative data
The guidelines set out and discussed in this report are intended for consideration in the possible future use of data about citizens by the public sector.
This report synthesises the diverse expressions of participants to draw out major themes of discussions and to draw attention to the way that the panel - individually and collectively - made sense of a complex topic, describing what mattered to them and why. On occasion, the report refers to verbatim assertions by participants and their understanding of the issues. These are not intended as authoritative statements of fact, but they tell us something important about how the issues can be perceived and understood by members of the public.
A robust and systematic analysis approach was used, with conclusions based on groups that are reflective of the diversity of the wider public. The deliberative nature of the project allowed for ongoing analysis throughout fieldwork, which ensured that emerging principles and themes - both from workshop discussions and online community activities - could be played back to participants as the dialogue progressed. Analysis does not seek to quantify findings nor does it indicate statistical significance from a representative sample. A more detailed summary of the analytical approach to the dialogue can be found in appendix D.
This report offers a constructive insight into public perspectives on the key questions posed to them after receiving and deliberating on essential information relevant to the questions.
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