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

Benefit sharing

Background to benefit sharing

To help support their discussions further, the panel heard a presentation on data sharing and benefit sharing by an academic from the University of Edinburgh. The presentation first outlined some of the key issues around private sector use of public sector data, including what previous public engagements had found on this topic. It then explained benefit sharing as a way of ensuring there is a public benefit when data are shared.

Benefit sharing was described, broadly, as the idea that benefits of research (including data projects) should be shared in a fair and equitable manner, avoiding exploitation of individuals or groups. The presentation outlined reasons why benefit sharing might be considered, including:

• Addressing issues of justice and fairness
• Avoiding harm and promoting public good
• Promoting trust
• Creating a moral economy – where data sharing should be to assist others rather than for financial gain
• Involving the public in decisions about how benefits are distributed
• Enabling acceptable private sector involvement.

The presentation drew on previous research carried out for the Scottish Government which included a literature review to identify international approaches to benefit sharing.^[1] A selection of these approaches were presented to the panel for discussion (figure 1.3). It was stressed, however, that these approaches can overlap with each other and are not mutually exclusive.

Figure 1.3: Potential approaches to ensure public benefit

Sharing profits from using public sector data, e.g. profits returned to the public sector.

Collaborative arrangements involving many stakeholders.

Community-based partnerships including consultation to identify community needs.

Contract-based models making terms clear and legally binding.

Benefit sharing considered as part of access approval.

Perceptions of benefit sharing

Positive reactions to the concept of benefit sharing

Benefit sharing was considered a good idea and a positive way of ensuring that public benefits were realised. Participants felt that it was only fair for benefits to be shared, either between organisations or with the wider public. They welcomed the collaborative aspect of benefit sharing, which they felt demonstrated a sense of trust and transparency between the organisations involved and helped ensure that benefits would be distributed fairly.

Participants' discussions focussed mainly on how benefit sharing would work in practice. They were particularly interested in understanding more about how decisions were made, such as around who should benefit, how profits should be shared, and what oversight mechanisms are in place.

Some questions raised by the panel:

"If profits are returned back to the public sector, who decides where that money goes and what is that decision based on?"

"How would you get an approval panel? How would they pick people for it?"

"How would an approval panel work in the context of the Scottish Government?"

"How do you avoid benefit sharing being a sham – where an organisation claims there are public benefits, but they are not genuine?"

Oversight and scrutiny are essential

The importance of oversight of the data sharing and benefit sharing process was highlighted by participants. They were supportive of the idea of an independent scrutiny body to oversee not just the acceptability of a data project (which the panel had recommended in the ethical guidelines produced in the previous workshops), but also the extent to which benefits would be realised and shared. Participants felt that this would provide a form of due diligence, and a form of scrutiny that they had previously identified as important when considering data sharing (as highlighted in the previous section).

"I can see that with due diligence and an access approval panel assessing the benefits, the obvious "get rich quick" schemes will get kicked out and the ones that have genuine public benefit will, rightly, get approved." (Session one)

The presentation on benefit sharing referred to access approval panels, which could provide independent scrutiny of projects and benefit sharing proposals. Access approval panels were welcomed and seen as a way of providing reassurance that the public benefit of data sharing was being considered.

Community involvement can lead to positive impacts

Public engagement and public consultation were described (in the presentation) as ways of helping decide how benefits should be distributed. Involvement of the public in the initial stages of a project, and throughout, was viewed by participants as a positive way of involving people that might be impacted by decisions (e.g. members of a community that might be impacted by the data project). Where organisations that use public data have a positive relationship with the community affected, it was felt that this could lead to better outcomes because communities have a say on projects that impact them and on how the benefits should be distributed. It was also felt that involving communities could help create a sense of empowerment for community members.

"If you get the buy-in from the community, that can [help create] long-term changes and improvements." (Session two)

However, there were different views on the extent to which the public should be involved in an approval panel. On the one hand, it was felt that members of the public should be included because they could provide an objective perspective on a project, without being driven by financial motivations. On the other hand, there was a view that it would be too difficult to compose a panel that would adequately represent different views within a community.

"I think it would be better [including] members of the public. I think they would be more natural and honest, with no profit making interests. (Session one)

"I can see some problems with…. the community having a say. I can see that getting really complicated if you have very disbursed communities or communities of interest." (Session one)

Profit sharing arrangements can help to demonstrate public benefit

Participants were broadly supportive of profit sharing arrangements, in which profits resulting from private sector use of public sector data would be shared with public sector partners. It was felt that this arrangement could ultimately help to support public services, and therefore have public benefits for wider society. It was seen as a way of ensuring mutual benefit of data sharing, offering the opportunity for both the private sector and the public sector to gain financially. The possibility of profit sharing models also caused some to say they would feel more comfortable with private sector access to data, as re-investing into the public sector would mean that both profit and public benefit could be achieved.

"Profit is going to be a main aim for private companies, but as long as it's not exploitative [it is acceptable]. There's definitely room for profit sharing to reinvest into the public space." (Session two)

There were also challenges discussed in relation to profit sharing. One participant viewed this model as a "slippery slope" towards privatisation of the NHS, as it suggested a move towards a more profit-motivated way of working. There were also mixed views on the likelihood of private organisations being willing to share profit with the public sector. Participants therefore wanted to know more about how this process would work, particularly who would decide on where profits were distributed to and how.

Importance of accountability

There was concern that some private sector organisations may claim to be delivering a public benefit, but not actually do so. Having clearly defined and agreed benefits built in from the beginning, evidenced through a contract between the data sharing organisations, was seen as a way of reducing this risk and ensuring efforts were made to deliver the intended public benefit.

"…some of it can just be lip service. In the private sector, if it's not in a legally binding document then it's not happening." (Session one)

There was also a desire among the panel for organisations to be held accountable if they do not deliver on benefit sharing arrangements or if public benefit does not materialise. However, there was recognition of the exploratory nature of some research projects, which may mean that public benefit is less tangible or not realised until sometime in the future.

"All projects are ideas, they don't know if they will be of great public benefit or not. Ideas can gradually get better…[maybe] it didn't work out as good as they hoped, but there might still be ideas beneficial in the future." (Session one)

One option discussed was an audit of organisations' use of data, to follow up on whether they had contributed the benefits they had agree to, including any profits they agreed to share.

Contract-based models, in which the terms of data sharing and approach to benefit sharing were agreed in writing, appealed to participants. There was a level of expectation that data sharing would be carried out under a contractual agreement anyway, but the inclusion of conditions around the terms and conditions of benefit sharing was seen as appealing. Participants felt this would hold organisations to account for ensuring they distributed benefits (including profits, if that was part of the arrangement) fairly.

"[Contracts] would build confidence in the public and give some reassurance that, the whole concept is to actually create a benefit for all. It's a binding contract." (Session two)

Extent to which views changed

The panel felt that the issues related to private sector use of data echoed much of what they had already discussed, either earlier in this session or in the previous workshops. They recognised many of the findings from previous public engagement on this topic (as outlined in the presentation^[2]), particularly where it showed that previous groups of the public expressed concern about pure profit, but acceptance of the value of private sector innovation; a feeling that private sector access should result in public benefit e.g. improvement in services; and concerns about security of data. It was common for participants to say that these findings in the presentation reflected and validated their own perspectives. This provided a sense of reassurance that the panel were "on the right track" in terms of their own deliberations.

Having learned about benefit sharing and spent time discussing the various pros and cons of data sharing arrangements, some participants said they had become more positive about data sharing with the private sector. While it was noted that benefits will depend on the nature of the project, it was felt that data sharing could have positive impacts on public wellbeing and public services.

"When we first discussed it in previous groups, there was hostility, but I think as we've unpicked it, I feel more reassured. There are still things you want to make sure are in place… but overall I feel more reassured than I did when I first started." (Session one).

There were still some concerns that there may be companies that are attempting to access data for reasons not within the public benefit, and participants therefore emphasised the need for adequate checks on those organisations.