Public Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research Purposes

6 CONCLUSIONS

6.1 The purpose of this research was to build on previous research, literature and practical examples from elsewhere to enhance understanding of sensitivities around data sharing between the public, private and third sectors for statistical and research purposes, and to explore options for mitigating concern. Therefore the research also sought to explore public views of benefit-sharing, including which methods of benefit-sharing were most acceptable; and to assess what methods could be most efficient and effective in empowering citizens in decision making about how their data is used.

6.2 Across the events and various break-out groups, views were generally consistent, though nuanced, thus providing a reasonably clear and coherent set of findings in respect of the aims and objectives outlined above.

Sensitivities around data sharing between the public, private and third sectors

6.3 Concerns and sensitivities around data sharing between the public, private and third sectors clustered around five inter-linked themes:

6.4 Security and privacy: As in the 2012 research, concerns about data security and privacy featured prominently throughout the discussions. Participants continually sought reassurance around how security and privacy would be ensured - not least to prevent their personal details from being shared between commercial actors and used in direct marketing campaigns. While most were content that anonymisation, if rigidly enforced, would go some way towards protecting privacy, even in the event of a data breach, others were significantly more sceptical. Addressing such concern must therefore remain a focus as the Data Linkage Framework is further developed.

6.5 Data uses and the public interest: Participants were unequivocal that research using shared data should only be carried out when it is likely to result in some form of public benefit. Accordingly, they opposed the involvement of private sector organisations that they regarded as predominantly profit driven, or that they otherwise did not trust to act in, or protect, the public interest (this included banks and other financial institutions, as well as internet providers and social media companies). Similarly, there was some opposition to data being accessed by third sector organisations concerned with sectional interests.

6.6 Labelling: As was apparent in the 2012 research, there was clear concern that the sharing of quantitative data across and within sectors could lead to increased negative labelling of individuals and groups, particularly in socio-geographic terms. While this was most commonly discussed in relation to insurance companies blacklisting or setting higher premiums in particular areas, there was a perception that public bodies similarly make important assumptions and decisions about people based on where they live. Efforts on the part of public bodies to make the public more aware of steps they take to look 'beyond statistics' and to develop an understanding of individuals' and communities' circumstances and needs may go some way towards countering such perceptions.

6.7 Statistical disclosure: The discussion about data types revealed significant concerns about the potential for individuals to be identifiable from shared datasets. These concerns related mainly to data on postcode and sexual orientation. Postcode data raised particular concerns for participants in Oban and Galashiels, who felt that it would be possible to identify an individual within a database focusing on a small geographic area from a combination of his/her postcode combined with a small number of additional variables. Sexual orientation data was most commonly discussed by LGBT participants, who were concerned about potential data misuses in the event of the information falling into the wrong hands. Such concerns suggest there is a need to inform and reassure people about the contexts in which more personal types of data, like postcode and sexual orientation, might be linked or shared, and mechanisms that will be in place to mitigate (unlawful) disclosure.

6.8 Transparency: There were significant concerns about how data linkage and sharing will be governed, and specifically about steps that will be taken to ensure that, having been granted access to data, an organisation - whether public, private or third sector - uses that data solely for legitimate, pre-defined purposes.

Conceptions of benefit-sharing

6.9 Benefit-sharing was perceived to be important and necessary, although it was clear that participants thought of benefits differently in relation to the public and third sectors' use of data compared to the private sector's. While they felt the realisation of benefits was an inevitable goal of research conducted by public and some third sector organisations, the prevailing view was that the main goal of private sector research was ultimately to generate profit. Consequently, benefit-sharing models were commonly seen as more relevant in the case of research involving the private sector than that involving only the public and/or third sectors.

6.10 Benefit-sharing models were mainly conceived of in terms of who should benefit - there was a particular focus on data subjects, data users and secondary beneficiaries - and how. In relation to data subjects, a clear distinction was drawn between research requiring their proactive participation and research that draws on routinely collected administrative or statistical data. With regard to the former, the consensus was that data subjects should receive direct benefits (for example, financial incentives or health advice). With regard to research drawing on routinely collected data, it was felt that data subjects should not necessarily benefit directly and, instead, society in general should be the main beneficiary. Societal benefits were conceived of in terms of primary benefits - outcomes arising directly from research (for example, improved services) - and secondary benefits - broader or longer term benefits (for example, better public health).

6.11 Discussions pertaining to data users focused primarily on research involving private companies. Despite participants' initial aversion to companies profiting from research using linked or shared data, the discussion of benefit-sharing led to the development of more nuanced views. There was general recognition that profits provided an incentive for private companies to invest in research, which contributed to wider economic benefits. However, significant concerns remained about the potential for excessive profit-making and participants felt it was important that benefit-sharing models incorporated clear stipulations to curb excessive profits. Specific suggestions commonly made in this regard included stipulations to ensure private companies:

• pay for using data - to provide recompense to data-holding bodies to cover data collection costs, particularly in cases where it might take years for profits to be generated;
• share profits - where appropriate, benefit-sharing models should include agreements to directly share profits between organisations involved, thus contributing towards the cost of data collection and providing funds to reinvest in further research;
• provide affordable products and services - participants felt that private companies should provide products and services to public bodies and/or data subjects at lower costs; and
• reinvest in communities - where research involved specific communities, a proportion of profits should be reinvested in those communities.

6.12 Participants also identified other countries and future generations as groups who, depending on the nature of the research, might become secondary beneficiaries. There was a view that recognising these groups in benefit-sharing models, particularly in cases where it is difficult to identify an immediate benefit to data subjects or users, would go some way to demonstrating that the research was in the public interest.

6.13 Participants felt there should be greater transparency around research involving shared data and that data subjects should receive feedback on how their data has been used. There was a view that such feedback would provide a means of thanking data subjects for providing data and demonstrating to them that the information was being put to good use.

Empowering citizens in decision making

6.14 As in the 2012 research, the readiness and ability of participants to engage in discussions about data sharing, along with their positive feedback about the deliberative events, itself provides a strong case for ongoing public engagement in the development of policy and strategy. Further, the findings suggest that the Scottish Government's current approach to involving the public in decision making primarily though consultative work is broadly in line with expectations but this should be supplemented with:

a) a media-based campaign to raise awareness of the Data Linkage Framework (including the rationale for it, potential benefits and governance arrangements);

b) mechanisms for keeping the public up-to-date with developments. While the main suggestion made in this regard was for a central online information hub, consideration will need to be given to how best to communicate with members of the public who do not use the internet. One option that might be considered is the provision of a postal address that participants can use to request hard copy information, equivalent to that posted on any website created;

c) approaching consultation as an on-going process rather than considering it as a one-off strategy to ascertain public attitudes and acceptability; this will enhance citizen engagement and empowerment.