Public Acceptability of Cross-Sectoral Data Linkage

1 BACKGROUND

1.1 Scotland is recognised as an international leader in data linkage for the purposes of research and service analytics, particularly in the health sector where robust mechanisms exist for linking various datasets holding medical records and related sources, such as the Scottish Health Survey. This has helped to generate insights into patterns of health and illness in the population, as well as to examine the impacts of new treatments or policies (see Morris et al,1997; Bhopal et al, 2011). Data linkage has also been used successfully in other sectors, such as to demonstrate the impacts of social care on children's education and future crime (see the Edinburgh Study of Youth Transitions and Crime). At present the technical and regulatory mechanisms for undertaking record linkage studies are piecemeal and cumbersome and the Scottish Government has recognised the scope for the national research environment and strategic capabilities to be enhanced by facilitating linkage across different public sector databases. It is important to emphasise that this is different from the sharing of information across agencies for the purpose of tailoring services (e.g. clinical care) to individual needs or to identify individuals at risk.

1.2 The Scottish Government is working with a wide range of partners to establish a collaborative strategic framework that will enable cross-sectoral data linkages for research and statistical purposes to be conducted safely, securely, legally, ethically and efficiently. In March 2012, it published the consultation document, A Scotland-wide Data Linkage Framework for Statistics and Research (Scottish Government 2012), which sets out its proposed strategy and a set of 'Guiding Principles' for linkage. The strategy is premised on the principle of protecting individuals' rights to privacy whilst maximising the potential of data linkage for research and statistical purposes.

1.3 A key barrier to further linkage identified in the consultation document is concern among data custodians around the public acceptability of the process. Along with uncertainty around the legalities of linkage, this has resulted in custodians at times erring on the side of caution and refusing data linkage requests. Understanding public acceptability and developing safeguards to address any concerns is therefore essential if the benefits of cross-sector data linkage are to be fully realised.

1.4 While research that has focused specifically on the acceptability of cross-sector data linkage is quite limited, there is a reasonable body of scholarship on public attitudes towards linking data for health research, reasons for participating in health research and different approaches to gaining consent.

1.5 Jones and Elias (2006) have suggested that public perception in the UK is itself a barrier to effective data linkage in the UK context. However, although concerns have been identified in research on public attitudes, such studies have not found outright rejection of the aims and objectives of data linkage for research, nor of the methods through which these might be achieved (Aitken 2011). Existing evidence regarding health-related data suggests there is general support for the use of personal medical data for research (Haddow et al. 2007). Where surveys have asked for consent for data linkage to the survey data collected, response rates have been good (e.g. the Growing Up in Scotland study), again suggesting a degree of support.

1.6 Nonetheless, concerns about privacy and confidentiality are raised in different research contexts and the tension that exists between these and the wider public interest (see for example Heath 2010 and Willison et al. 2007). Several studies have suggested that the purpose of the research plays a role in shaping public acceptability, with wide social benefit considered important, such as improvement in services (see for example Willison et al. 2007 and Aitken 2011). Who has access to data is also an important influence and concern, and there seems to be a degree of public unease about commercial involvement (Trinidad et al 2010). Damschroder et al (2007), amongst others, have found that trust is key to whether or not people are willing to share data from their medical records. Further, components of trust appear to relate to systems issues, such as security, research relevance (for public/patient benefit) and trust in researchers (see for example, Hunter et al, 2009).

1.7 The Scottish Government's consultation document and the Data Linkage Framework set out therein sought to address some of these public acceptability issues, whilst soliciting views on key questions pertaining to the ongoing development of the Framework.

1.8 In parallel with, and to supplement the findings of, the written consultation, the Government had a number of meetings and discussions with key stakeholders. It also commissioned Ipsos MORI Scotland, along with Professor Sarah Cunningham-Burley and Dr Claudia Pagliari from the Centre for Population Health Sciences at the University of Edinburgh, to undertake a series of public deliberative workshops in order to provide an enhanced evidence base on the public acceptability of the proposed Framework. This report presents the findings of these events. Responses to the written consultation can be viewed on the Scottish Government's website.³

Research objectives

1.9 The overall aim of the research project was to explore the views of the public on the acceptability of linking personal data for statistical and research purposes, thereby identifying particular sensitivities and potential barriers to public confidence and exploring mechanisms for overcoming concerns.

1.10 Within this overarching aim, the more specific objectives were to:

• identify particular concerns or sensitivities amongst members of the public around the sharing and linking of data within and between sectors
• identify whether any particular sector-to-sector linkages raise levels of concern about privacy
• test the extent to which the draft 'Guiding Principles' reassure participants that data linkage will be governed appropriately
• identify what safeguards could be put in place to maximise public confidence
• investigate the extent to which the public support the objectives of the 'Beyond 2011' project and the extent to which these raise further privacy concerns
• investigate whether the public have views about on-going public involvement and how this might be achieved.

Structure of the report

1.11 The next chapter sets out the methodology that was adopted for the research. Chapter 3 begins by examining participants' general attitudes towards organisations holding and using information about them, before considering their unprompted reactions to the idea of data linkage. Chapter 4 explores in detail participants' reactions to an informational presentation on the proposed Data Linkage Framework, including the extent to which their initial attitudes to data linkage changed in light of the presentation. Finally, Chapter 5 summarises the key findings from the research and the implications of these for the ongoing development of the Scotland-wide Data Linkage Framework for Statistics and Research.