Public dialogue on data sharing outside of the public sector in Scotland

Executive summary

Introduction

In late 2022, the Scottish Government and its partners from Research Data Scotland 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 develop a set of ethical guidelines for public sector use of data. Over the course of the original workshops, some issues arose that were not covered in great detail but that the panel considered necessary for the public sector in Scotland to consider in further detail 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 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, to explore these issues further. These additional workshops were carried out with 15 of the 25 participants who took part in the original panel. 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.

Objectives 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?

Over the two online workshops participants listened to presentations from experts (including representatives of data sharing projects and a speaker that raised ethical considerations about data sharing), learned about the topics (private and third sector use of data from the public sector, benefit sharing as a way of ensuring public benefit, and the ethics of data sharing) and then discussed the issues together before reaching conclusions.

Key findings

There were different levels of comfort with private sector access to data from the public sector, but the panel became more positive as the workshops progressed.

Potential benefits of sharing data with the private sector were recognised. It was seen as helping to encourage innovation, for example with drug development, which could help to support the treatment of health conditions. However, there was also concern expressed about the potential lack of control over how commercial companies might use data, for example, using it to target individuals for cold calling. Having learned about specific examples of data sharing projects and ways that the public could benefit (e.g. through profit sharing arrangements), participants felt more convinced of the potentially positive impacts from private sector access to data and reassured about the processes in place to help support public benefit. There were, however, lingering concerns about potential misuse of data and the panel emphasised the need for due diligence, scrutiny and oversight of private sector access to, and use of, data.

The panel felt there was no single definition of public benefit and that this should be judged on a case-by-case basis.

However, they identified certain outcomes that they would expect to see from a data sharing project to be considered in the public benefit. These included:

• Improving health and wellbeing and avoiding harm.
• Improving service provision (health services or others) either through improved knowledge or a result of financial contributions generated from the data sharing project.
• Better resource allocation, by using insights from data to target support at the right people (e.g. those most in need of financial or other types of support) and using data to ensure services were provided where they were most needed.
• Contributing to wider positive financial, economic and environmental benefits.

Support for data sharing, and private sector access to data from the public sector in particular, was based on the assumption that certain conditions would be in place.

Participants wanted reassurance that there would be a degree of control over access to data and that the benefits from data sharing would be distributed in a fair and equitable way. Some of the factors they would like to see in place for data sharing to be in the public benefit included:

• A form of benefit sharing in place. Participants wanted to see benefits shared, either between organisations or with the wider public. Profit sharing arrangements in particular were seen as a way of reassuring the public that private sector access to data was not purely motivated by financial gain, and that profit generation and public benefit could
  co-exist.
• A written or contractual agreement in place to govern the use of public sector data outside of the public sector and its intended benefits. As well as creating terms and conditions for how data would be used, participants wanted to see this include reference to how benefits from the data project (financial or otherwise) would be distributed.
• A process of due diligence and oversight that means private or third sector organisations are held to account for their use of public sector data. As well as through a contractual agreement, it was felt that this could be through an independent scrutiny body or an approval panel.

The panel identified a few circumstances in which they would consider data sharing to not be in the public benefit:

• When the project is detrimental to or causes negative impacts on society, or to any particular group.
• When profit is the sole driver for the project and data are used to exploit members of the public. Examples included the use of data by insurance companies purely to increase rates, or use of data by a pharmaceutical company to increase the prices of a medicine, which might make it inaccessible to those who need it.
• Where it leads to targeted selling or where data are passed on to third parties to sell products or services. Opposition to this was driven by a desire to protect individual privacy and to avoid people in vulnerable situations being taken advantage of.

Participants felt that public sector data should be anonymised before being shared with the private sector.

Participants were uncomfortable with the potential access to non-anonymised data by private sector companies due to the concern, highlighted above, that this could lead to targeted selling.