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

Reviewing data sharing projects and wider considerations

• To help explore participants' views on data sharing outside of the public sector, the panel heard presentations from specialists representing two projects that used or wanted to use public sector data. The specialists were selected to help bring the concept of data sharing to life, to facilitate a dialogue between participants and users of public sector data, and to support participants to reach more informed views.
• The first project represented private sector use of data and the second represented third sector use of data. Participants were asked to consider the extent to which these projects provided a public benefit, as well as considering any risks or benefits from the projects. They then heard from two other speakers that provided a broader perspective on data sharing: one who represented the perspective of those whose data might be used (patient groups), and one who reflected on broader ethical considerations for the panel to consider.
• This chapter explores the panel's views on the data sharing projects, their reflections on the wider considerations, and how this impacted on their views on data sharing and public benefit.

Project examples

1: IQVIA

IQVIA is human data science company, providing various services in the healthcare field. IQVIA uses clinical records and patient data for healthcare research. The project example presented to the panel involved accessing anonymised health data (from NHS England's Cancer Analysis Service) to help understand patients' characteristics (age, gender ethnicity, etc.), treatments and conditions. The research findings helped inform development of new cancer treatments.

2. National Emergencies Trust (NET)

NET is a charity that raises funds to support people affected by disasters. A representative from NET presented an example of how it hopes to access public sector data. NET would like to use personal, identifiable NHS data to contact disaster survivors about support available to them and then provide that support. This would include accessing sensitive data (such as number of nights spend in hospital) to help access the amount of financial grant available to them.

Potential for public benefit from both projects

• The panel felt there was a clear public benefit to the IQVIA project in terms of increasing understanding of cancer and the development of treatments that could improve health outcomes and extend lives. By enhancing knowledge and understanding it was seen as potentially having wide reaching impacts on patients, NHS staff, pharmaceutical companies, and charities that work in the field of cancer who would better understand how to use resources.

"It feels to me very integral. It felt like it was a very important step in terms of medical science." (Session two)

• They also identified public benefit from the NET project in terms of providing financial assistance to survivors of a disaster and bereaved families, which could provide them with vital support and reduce their stress and worry.

"I think if something like that happens and you're in hospital, people will have debt and be worrying how they're going to cope. I think it'd be a huge impact on somebody's life if they were in a disaster like that. I think it's a fantastic charity." (Session two)

• However, some panellists expressed some reservations about a potential lack of control over how money provided through the NET project was used. NET does not stipulate how the financial support should be used by recipients, but participants felt there was a risk that the funding might be accessed by individuals who did not need it.

Anonymisation of data was an important consideration

Perceptions towards both projects were influenced by the level of anonymisation of data. The importance of anonymisation as an ethical consideration reflected the views of the original workshops, in which participants expressed concern about the level of identifiability of data and a desire to protect individual privacy.

The perceived public benefit of the IQVIA project was linked to the use of anonymised data. This provided a degree of reassurance for participants that individuals' personal details would remain private and would not be misused. It was also largely felt that the use of anonymised data meant that consent was less of an issue than if identifiable data was used. Nonetheless, while not seen as essential, it was also felt that informing patients about this use of their data would help to demonstrate transparency.

"I'd prefer that [patients] did know because it's better to be transparent than not. I think a lot of things go on nowadays in the background that you don't know about." (Session two)

In contrast, the use of identifiable data was highlighted as a risk of the NET project. While there was recognition of the need to act quickly in an emergency, panellists commented that (based on the information in the presentation) those affected would not have consented to sensitive personal data being shared and may not want to be contacted.

"Where [NET] get the data from might make people feel a bit icky. All of this information is just being passed onto somebody [that people] didn't consent to." (Session two)

• To mitigate risks associated with breaches of data privacy it was suggested that information about NET could be shared by hospital staff for people to get in touch if they were interested, rather than being contacted directly by the organisation.

Risks of data being used by other organisations

• Participants questioned whether there was a risk that IQVIA would share data with other organisations such as insurance companies. This was linked to a perception that insurance companies might use research insights to influence insurance policy decisions, or to target individuals to sell products. It was explained (in the Q&A) that IQVIA does not have access to raw data or any identifiable information, and that they only share insights from the research rather than the data itself. Participants seemed reassured by this response.

Vulnerable individuals may be at risk of fraud

• Perceived risks related to the NET project were that individuals might make false claims, and that vulnerable individuals might suspect contact from NET as being fraudulent. Panelists were interested to know how NET overcomes these potential issues and there was some discussion about whether having one charity to coordinate this kind of a response may reduce the risk of fraud.

"…there are so many scams on the go at the moment where you get cold calls, it just rings alarm bells…how they would do this in a way that doesn't lead to confusion." (Session two).

Appetite for more information on the organisations and the projects

• The panel raised questions about both organisations that highlighted some of the issues that were important to them. To help them assess more fully whether projects were in the public benefit, they wanted more information on the background to each organisation, how they were funded and what their overall role ethos was. Views did not seem influenced by whether the organisation was in the private sector or third sector – participants raised similar types of questions for both organisations. Their questions also highlighted a desire for more information about how data was kept secure and data breaches were avoided.

Questions that were raised, and answered, in the Q&A with IQVIA included:

• "How are [IQVIA] funded?
• "Where does the money for [NET] come from?"
• "What were [IQVIA] actually set up to do? What is their ethos? Where is the profit coming from?"
• "What else do [NET] do?"
• "What processes are in place to prevent a data breach?"

Further perspectives on data sharing

• To help provide a broader perspective on the topic of data sharing outside the public sector, the panel heard from two further speakers. One provided a patient-led perspective on how data should be used, and one provided an ethical challenge, by highlighting some of the broader ethical considerations that panellists may wish to consider when thinking about data sharing projects.

1: use MY data

• use MY data is a movement of patients, carers and relatives focussed on patient data. Members argue for patient data to be used to save lives and improve outcomes. The presentation described how use MY data works to increase their members' understanding of data sharing, encourage members to have a voice in the decision-making process, and to help overcome issues with that in terms of increasing transparency and safeguarding.

2. Ethical challenge

• A presentation on the ethics of data sharing was given by an academic from the University of Edinburgh and The Alan Turing Institute. The presentation acted as a reminder of some of the ethical considerations which the panel were introduced to in previous panel meetings: privacy and confidentiality, consent and data use agreements, data security, and ownership.

Advocating for patients' rights was welcomed

The existence of use MY data provided a sense of comfort and reassurance to the panel, as it was an organisation that was advocating for the rights of the public. By representing patients, carers and relatives, it was seen to be providing a worthwhile and beneficial service for the public.

"If there are… groups of people that are advocating for our best interest, learning more about that can make you feel more comfortable." (Session two)

They also welcomed the organisation's efforts to help ensure the process of data sharing was carried out the right way – some compared its role to the work of the panel, as both were helping to develop principles around how data should be used. However, there was some cynicism about the organisation's ability to influence how patient data was used, given the assumption that health data will be shared anyway, regardless of their involvement.

Importance of informing the public about how data are used

The presentation from use My data included information about a range of ways the organisation informed its members about how patient data was used (including webinars, workshops and newsletters). The organisation's role in informing the public about data use was viewed positively, as participants felt this would help convey the benefits of data sharing, in language and terminology that the public would be able to understand.

Privacy and consent remain key considerations

A key consideration that stood out for participants from the ethics presentation was the importance of protecting confidentiality and protecting against data breaches. They noted that this had been a key consideration for the panel in the original workshops, and felt it was still an important aspect to consider when sharing data outside of the public sector.

Discussions around data protection also came back to the issue of consent. The national opt-out system for NHS England (in which patients can opt out of their information being used for research) had been mentioned in the presentation from use My data, and some felt that this should be applied to the use of data by private sector organisations.

"I thought the opt-in and opt-out was a good thing…but it was mainly in England rather than Scotland. I'm all for them using the data as long as it's not being breached or passed on to call centres. But I do think people should have the choice to opt out if they don't want people to have their data." (Session two).

The idea of an opt-out system was compared with the national organ donation programme, in which people are considered to have agreed to be a donor unless they formally opt out. Having a similar approach was seen as a way of reassuring the public, particularly those uncomfortable with private sector access to data, that their data would not be used in ways that would not want it to be. However, it was also felt that consent of this nature would not be necessary if there was a guarantee that identifiable data was not being shared.

Extent to which views changed

The data project examples, and the wider considerations related to data sharing, confirmed many of the issues that were already important for participants. The project examples, particularly the healthcare related one (IQVIA), helped demonstrate that public benefit can be achieved as a result of private and third sector involvement in data. Hearing from the private sector example, which participants felt had a strong public benefit due to the impact on cancer treatment, caused some to feel more comfortable with profits being made - as long as this was alongside a clear public benefit.

Overall, panellists noted that many of the considerations outlined by in the ethics presentation had already been covered in the panellists' deliberations, and this provided both a useful reminder and a sense of reassurance that specialists were considering similar issues to the panel.

Reflections on the presentations also helped to confirm some of the factors that were important when data was being sharing outside of the public sector. These are outlined in the concluding chapter.