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

Conclusion

These two workshops, delivered as part of the wider public dialogue on use of public sector data, set out to understand public views on these 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?

This chapter outlines the panel's overall findings by revisiting each of these overarching questions. It draws on the findings outlined in previous chapters, as well as participants' final reflections on these questions at the end of the second workshop.

Types of benefit that would be expected from a data sharing project

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. This echoed views from the original workshops, in which participants expressed their interpretation of public benefit using these terms.
• Improving service provision either through improved knowledge or a result of financial contributions. The main example of service improvement that participants kept returning to was in relation to health services, and the ability for data sharing projects to lead to better diagnosis and treatment of health conditions. The ability to improve health services was seen as particularly important in the context of limited public sector resources and lengthy NHS waiting lists.
• Better resource allocation. This included using insights from data to target support at the right people, for example those most in need of financial or other types of support, and using data to ensure homes, infrastructure and other local services were provided where they were most needed.
• Contributing to wider positive financial, economic and environmental benefits – this was expressed in broad terms and not defined further, reflecting the general views that there was no single type of benefit that would be expected from data sharing project.

Conditions which would help demonstrate public benefit from data sharing

The panel identified a number of factors that they would like to see in place for data sharing to be in the public benefit:

• A form of benefit sharing in place. This could include a profit-sharing arrangement (in which some profits are passed back to the public sector), collaborative arrangements between a range of organisations and partnerships with communities. Profit sharing arrangements in particular were seen as 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 data and its 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 than means private or third sector companies are held to account for their use of data. As well a contractual agreement, it was felt that this could be through an independent scrutiny body or an approval panel.

Circumstances in which data sharing would not be in the public benefit

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 a particular group.
• When profit is the sole driver for the project and data are used to exploit members of the public. Examples given to illustrate this point was 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.

Groups that should benefit from data sharing

As noted earlier, public benefit was seen as a broad term and it was therefore felt that data sharing projects could benefit broad society (e.g. through widespread advances in medical research) or specific groups (e.g. those in a community that would be impacted by data-driven decisions).

Participants were supportive of data sharing projects that could support vulnerable groups, for example if the project led to improved funding, benefits, or provision of specific services. There was also a feeling that people whose data are being used should be the ones to benefit – for example in the case of medical research on a particular condition, which should ultimately benefit people with that condition.

Views on data sharing did not differ greatly in relation to private or third sector organisations. Participants wanted the same checks and standards to apply to organisations in any sector – in either sector, they wanted confidence that the organisations would treat the data securely and that the process would be robustly assessed and monitored.