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

1 INTRODUCTION

Background to the research

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^[2]. However, the technical and regulatory mechanisms for undertaking record linkage studies are somewhat 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.

1.2 In early 2012 the Government published the consultation document, A Scotland-wide Data Linkage Framework for Statistics and Research, which set out aims, benefits and challenges to data linkage, alongside a draft set of 'Guiding Principles' and suggested functions and objectives for infrastructure to support and enhance data sharing and linkage with appropriate regulation and oversight.

1.3 A key barrier to data linkage identified in the consultation document was uncertainty, among data custodians, regarding the public acceptability of the process and the legalities of linkage. Up until now, this has led to considerable variation in responses to data linkage requests for research by those who control such access. In order to seek clarity on these issues the Government held meetings and discussions with key stakeholders, sought advice from international experts, written submissions from Scottish stakeholders and commissioned research into the public acceptability of data linkage and the draft 'Guiding Principles' (Davidson et al, 2012).

1.4 The results of that research - which took the form of a series of public deliberative events across Scotland - indicated that the public is, in principle, broadly supportive of data linkage, particularly for health research, and of the overall objectives of the Data Linkage Framework and its 'Guiding Principles'. However, this support was conditional and a range of ambivalences and concerns were also expressed: there was significant unease about the private sector having access to public sector data and, more specifically, about the scope for commercial gain arising from data linkage (Davidson et al, 2012).

1.5 In Joined up data for better decisions: A strategy for improving data access and analysis, the Scottish Government acknowledged these concerns and reiterated that data linkage activity must be conducted in the public interest and in a manner that is acceptable to the public. Further, it outlined a commitment to continue working with members of the public and other stakeholders to explore fully the appropriateness, concerns, benefits and risks of private sector involvement in the use and analysis of data collected and held by public bodies.

1.6 Reflecting this commitment, in spring 2013 the Government commissioned Ipsos MORI Scotland, along with Dr Mhairi Aitken, Professor Sarah Cunningham-Burley, Professor Graeme Laurie, Dr Claudia Pagliari and Nayha Sethi from the University of Edinburgh, to conduct research to explore the views and deliberations of members of the public on the use of personal data by the public, private and third^[3] sectors, and in particular the sharing of data between these sectors.

Research aim and objectives

1.7 The overarching aim of the project was to build on previous research, existing literature and practical examples to enhance understanding of sensitivities around data sharing between the public, private and third sectors for statistical and research purposes.

1.8 Specific objectives of the research were to establish:

• whether and how attitudes and sensitivities varied depending on:
  
  • the sector (private, public or third) and specific type of organisations that may be involved in data sharing
  • the data types, specifically including personal data on protected-characteristics (sex, age, ethnicity, sexual orientation, religion, disability, pregnancy and maternity), which may make inadvertent statistical disclosure more likely
  • the reasons the data may be shared between the public, private and third sectors for research and statistics
• whether the public think about 'public benefit' differently in relation to the private and third sectors' use of personal data compared to the public sector's, as well as the private sector's use of personal data compared to the third sector's
• what methods of benefit-sharing are most acceptable to the public
  
• what methods could be most effective and efficient in empowering citizens in decision making about how their data are used