Unlocking the value of data - public engagement: literature review

Introduction

Public sector organisations in Scotland hold rich datasets that have high value. Unlocking this value and realising the full potential of Scotland’s data to create public benefit requires collaboration and partnerships between public sector organisations and third parties, including private sector organisations that have skills and knowledge which can enable public sector organisations to more effectively make use of and harness the benefits of the data that they hold. There are significant incentives to capitalise on this data, including to improve public services, processes and outcomes and foster data driven innovation in Scotland and beyond, but this is all conditional upon the ability of public sector organisations to make their data accessible and useable by third parties in ways that are acceptable to publics and retain public trust. This creates challenges because the use of public sector data by or with the private sector is a contentious area that has incited public debate and concern, including due to a stream of previous public controversies around data sharing initiatives that did not gain a sufficient social licence to operate.

Prominent examples include the failures of the care.data programme, launched in 2013 with the aim of enabling access to and use of routinely collected health and social care data for commissioning and other purposes beyond direct patient care. It has been argued that the public controversy generated around care.data was due to its failure to gain a social licence, including because communication about the initiative was not appropriately transparent to enable publics to trust that their data was sufficiently protected against misuse and because publics were not convinced that care.data served public benefit (see e.g. Carter, Laurie, and Dixon-Woods, 2015). Similarly, the recent controversy over the sharing of the Royal Free NHS Trust identifiable patient data with the Google Deep Mind subsidiary to create a diagnostic application generated public concerns including around the potential commercialisation of patient data, insufficient transparency around the initiative, and lack of consent from patients for this data use (see Ballantyne & Stewart, 2019). Further, these challenges are not limited to the UK. For example, in 2019, Ascension, a large US non-profit healthcare system, announced a data partnership with Google called “Nightingale,” which involved the moving of identifiable patient records onto a Google cloud server for data analysis and processing. This incited public alarm as well as an investigation by the US Department of Health and Human Services Office for Civil Rights due to concerns over a healthcare system sharing patient data with commercial companies in general and distrust in Google’s promises to keep this data private, secure and separate from their other data in particular (see Wachter & Cassel, 2020).

Beyond the public controversies in this area, as we will show below, publics generally have negative spontaneous reactions and relatively low levels of trust in private sector organisations, combined with a strong expectation that any use of public sector data will be transparent, accountable, serve public interests and, most importantly, result in public benefit over and above any private or commercial benefits that may be realised from it. This brings to the fore that the success of data sharing ventures and partnerships between private and public sector organisations is dependent on understanding how to secure public support and trust for such ventures, and on ensuring that each initiative is publicly acceptable and geared to deliver public benefit.

In what follows, we report the findings from a literature review of previous public engagement regarding the use of public sector data by or with the private sector over the last 10 years both in the UK and internationally. The aim of this is to inform the design of a programme of public engagement for the Scottish Government in this area including appropriate further engagement activities. Accordingly, the review was driven by the question, what public engagement has been undertaken regarding the use of public sector data by or with the private sector? We undertook a rapid review of the existing literature on public engagement and public views on private sector use of public sector data using an adapted systematic review and thematic synthesis approach, through which we identified, analysed, and synthesised academic and grey literature. We found that deliberative and dialogue based qualitative public engagement and research methods are effective in identifying informed and considered public views on private sector use of public sector data, and there were eight key themes across the findings from the included literature: low public awareness, ‘gut reactions,’ and changing perceptions around data use; acceptability of private sector data uses; the centrality of public benefit; importance of benefit-sharing and distribution; trust and distrust; oversight, governance, and safeguards; public involvement and engagement; and the impact of demographic differences of people’s views. We conclude that these themes should be accounted for in the design of public engagement in this area so that engagements can move informed debate towards acceptable solutions, and we prove some corresponding recommendations.