BackgroundThe past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses (...) as well as important areas for further research.MethodsThis paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013. The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews.ResultsKey themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general—though conditional—support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data.ConclusionsWhilst the results indicate widespread public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy. (shrink)

The digitization of society and academic research endeavours have led to an explosion of interest in the potential uses of population data in research. Alongside this, increasing attention is focussing on the conditions necessary for maintaining a social license for research practices. Previous research has pointed to the importance of demonstrating “public benefits” from research for maintaining public support, yet there has been very little consideration of what the term “public benefits” means or what public expectations of “public benefits” are. (...) In order to address this pressing issue a series of deliberative workshops with members of the public were held across Scotland in May and June 2017. The workshops aimed to engage a cross-section of the Scottish population in in-depth discussions of the ways that the public – or publics – might benefit from data-intensive health research. The findings reported here discuss workshop participants’ understandings and expectations of health research; who they considered to be “the public” that should benefit from health research and; in what ways they felt “the public” should benefit. Workshop participants’ preference was clearly for the widest possible public benefit to be felt by all, but they also acknowledged the value in research aiming to primarily benefit vulnerable groups within society. A key focus of discussions was the extent to which workshop participants were confident that potential public benefits would be realised. A crucial consideration then is the extent to which mechanisms and political support are in place to realise and maximise the public benefits of data-intensive health research. (shrink)

Current attention directed at ethical dimensions of data and Artificial Intelligence have led to increasing recognition of the need to secure and maintain public support for uses of people’s data. This is essential to establish a “Social Licence” for current and future practices. The notion of a “Social Licence” recognises that there can be meaningful differences between what is legally permissible and what is socially acceptable. Establishing a Social Licence entails public engagement to build relationships of trust and ensure that (...) practices align with public values. While the concept of the Social Licence is well-established in other sectors – notably in relation to extractive industries – it has only very recently begun to be discussed in relation to digital innovation and data-intensive industries. This article therefore draws on existing literature relating to the Social Licence in extractive industries to explore the potential approaches needed to establish a Social Licence for emerging data-intensive industries. Additionally, it draws on well-established literature relating to trust to examine the relevance of trust, and trustworthiness, for emerging practices in data-intensive industries. In doing so the article considers the extent to which pursuing a Social Licence might complement regulation and inform codes of practice to place ethical and social considerations at the heart of industry practice. We focus on one key industry: Financial Technology. We demonstrate the importance of combining technical and social approaches to address ethical challenges in data-intensive innovation and to establish relationships of trust to underpin a Social Licence for Financial Technology. Such approaches are needed across all areas and industries of data-intensive innovation to complement regulation and inform the development of ethical codes of practice. This is important to underpin culture change and to move beyond rhetorical commitments to develop best practice putting ethics at the heart of innovation. (shrink)