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

Data sharing and public benefit – initial views

This chapter explores participants' early perceptions of data sharing outside of the public sector and the extent to which they considered data sharing to be in the public benefit. It outlines their initial views, as shared in the first of the two workshops.

Data sharing

To help support their discussions, participants heard an introductory presentation, delivered by Ipsos, explaining what data sharing means and reasons why data might be shared between the public and private sectors.

The introductory presentations on data sharing covered the following:

• Who might share data? Public sector, private sector, third sector
• Why might the private sector want public sector data?
• Why might the public sector want private sector data?

Following the presentation, participants were asked how they currently felt about data being shared outside of the public sector, with a particular emphasis on sharing with the private sector.

Different levels of comfort with private sector access to data

Potential benefits of sharing public sector 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. This was seen as particularly important in the context of limited public sector finances and a perception that resources were stretched within the NHS. The development of Covid-19 vaccines was given as a positive example of how private sector use of data can have widespread impacts on society.

"We shouldn't necessarily see the private sector as the big bad wolf, there are opportunities to combine public and private sector data for the benefit of society and commercial organisations as well. If we don't, we will be so behind…Covid was an example, the positives are huge and we can see how it would be a benefit in the future." (Session one)

However, there was also discomfort about private sector access to data. Concern was expressed about the potential lack of control over how commercial companies might use data, and there was a perception that the private sector may not be subject to the same level of scrutiny on data use as the public sector. One example was that commercial companies may exploit their access to data and use it to target individuals and conduct cold sales calling, which was seen as an invasion of privacy.

"Private businesses are there to make as much money as they can. If they're allowed to get a lot of data about people, that will be out of our jurisdiction. There are a lot of risks involved and that is something that we need to look in to in detail." (Session one).

Some felt that the acceptability of data sharing would depend on the sector. While health data was seen as having an obvious link to public benefit, as it could lead to improvements in the diagnoses and treatment of health conditions, the benefits from other sectors were less clear. The energy sector was used as an example, where it was felt that organisations may use data about customers to target them with sales information – which may result in people in financially vulnerable situations being taken advantage of.

For those that described themselves as uncertain or "on the fence" about data sharing, they recognised both the potential benefits and concerns about private sector involvement outlined above. They felt that a balance needed to be found, to ensure that the exchange of data was mutually beneficial and that no individual organisation was getting too much of an advantage over the other.

Desire for de-identification of data and oversight of private sector data use

Participants said that de-identified data would help them feel more comfortable about private sector access to public sector data. They felt that pseudonymisation, or other forms of de-identification, of data would help reduce the risk of private sector organisations using data to target individuals and attempt to directly sell their services. It was acknowledged, however, that some circumstances required personal information to be used – with reference being made to the shielding list project explored in the previous workshops – and that there may be exceptional circumstances where de-identification is not possible.

"I agree that there is a lot of bad publicity and bad feeling about companies who would be cold calling individuals, which I don't agree with. But if we can de-identify a lot of data, then we can stop that. I think public sector-private sector [collaboration] has a place." (Session one)

The need for oversight of the data sharing process was also emphasised. At this stage participants did not say what exact type of oversight would be most appropriate, but said they would want reassurance that a system or process was in place to ensure that data sharing outside of the public sector was carried out in a robust and ethical way. In particular, they wanted to ensure that all parties were keeping data secure and there was a level of accountability in place for its use. These views again echoed those of the original workshops and the ethical guidelines developed by the panel, which highlighted the importance of accountability and oversight of data use.

Public benefit

Having a clear public benefit was seen as an important consideration for any data sharing by the public sector. This was highlighted in the original panel, with public benefit being one of the overarching themes of the panel's ethical guidelines. To help participants explore the concept further, they were first shown a summary of the ways they had described public benefit in the original workshops (see figure 1.2).

Figure 1.2: How participants had described 'public benefit' in the previous workshop

"Benefit everyone without causing negative effects to anyone."

"Benefit for all society, regardless of class or status."

"Benefit to particular groups, such as minority groups."

"The reduction of harm."

"An increase in wellbeing."

"Not the same for everyone – but influenced by everyone's personal ethics."

Public benefit was considered a broad concept

Participants' views on public benefit had remained largely unchanged since the earlier workshops and, for the most part, they agreed with their previous interpretations of the term. However, they emphasised that public benefit need not always apply to the whole of society, and argued that this would be too difficult to achieve in every case. They felt that public benefit could apply to a smaller group of society, as long as this did not disadvantage or lead to negative impacts on others. There was also a sense that public benefit was broad and hard to define absolutely, as it can vary depending on the context and specific use of data.

Private sector use of data can have a public benefit

Though there were different views on the acceptability of private sector access to public sector data, it was felt that private sector organisations could contribute benefits to the public even if profits were also being made. The example of Covid-19 vaccines was used again, as this was seen as indicative of organisations being able to contribute to the wider public good (by reducing the impacts of the virus) while also making profit (for pharmaceutical companies and others). Other examples of public benefit and profit co-existing included private sector organisations using data to help diagnose illnesses, introduce or improve transport services, or develop fitness centres or other facilities to benefit communities. In these cases, profit did not negate the positive impacts that could be achieved.

Impacts on the wider economy were also discussed, and it was felt that profit-making companies already contributed to the wider public benefit by paying taxes and contributing to local economies. These were considered part of the wider public benefit that could be achieved through private sector use of data.

"As long as they're paying tax that [goes] back into the public sector. As long as the profit was coming back to the country, I'm quite happy. That's how business works. They have to make money." (Session one)

There was, however, some scepticism about the motivations of some commercial organisations. For example, there was concern about the use of data to sell insurance and other services, or pharmaceutical companies using data to justify charging more for their products which would make them less affordable and accessible. In these circumstances, participants felt the private sector would be predominantly motivated by profit and struggled to identify a public benefit. Voicing these concerns, participants again emphasised the need for mechanisms to be in place to oversee private sector use of data.

"The word to avoid is exploitation - of anyone's data or position. Control mechanisms should be in place, with stringent ones [placed] on the private sector." (Session one)

Views on public benefit and private sector use of data developed further after participants considered the idea of benefit sharing, and then considered some examples of data sharing projects. These are explored in the following chapters.