Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

Abstract

IntroductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK). Objectives and methodsThis paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends. ResultsParticipants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use.

Conditionally positive: a qualitative study of public perceptions about using health data for artificial intelligence research

“…as an asset that should be used as long as their concerns related to privacy, commercial motives and other risks are addressed. [10][11][12][13] However, we cannot assume that this general but conditional public support for data-intensive health research extends to AI/ML for several reasons. Foremost, research has shown that the members of the general public have low understanding of AI in general, alongside AI-specific hopes and fears including loss of control of AI, ethical concerns and the potential negative impact of AI on work.…”

“…9 Previous studies exploring the public attitudes toward data-intensive health research in general, that is, without an AI/ML focus, found that most members of the mainstream public are supportive provided there are appropriate controls. [10][11][12][13] While underscoring the need to address the public's concerns, studies in Canada, the UK, the USA and other jurisdictions suggest that members of the mainstream public view health data…”

Essential Requirements for Establishing and Operating Data Trusts

“…The international and Canadian research literature indicates that members of the general public are conditionally supportive of data-intensive health research provided that their concerns related to privacy, security and commercial motives are addressed [9,33,[40][41][42][43][44]. It is our view that governance is the best way to ensure that data trusts meet all legal requirements AND align with social licence, using the term governance to refer to the "locus of accountability for decision-making" in contrast with management which "involves making and implementing decisions" [45].…”

Notches on the dial: a call to action to develop plain language communication with the public about users and uses of health data

“…We believe that achieving effective proportionate governance of health data [19] requires authentic public and patient involvement that follows accepted principles such as inclusiveness, two-way communication and transparency [20]. There is a growing body of research evidence about public expectations around social licence and acceptable data uses of health data [21][22][23][24], and increasing commitment from many institutions to include the public in one way or another to inform or influence policies [7][8][9][10], but we have not yet implemented or operationalized the principles and ideas presented in the research literature at scale. One approach, presented here, is to create some standardized communications that distinguish between different uses of health data to ensure that members of the public do not confuse, or group together, commercial revenue-generating uses with public sector data-intensive health research.…”

“…The international research literature describes general but conditional public support for dataintensive health research. Qualitative studies indicate that members of the public view health data as an asset that should be used as long as there is a public benefit and their concerns related to privacy, commercial motives and other risks are addressed [21][22][23][24]. The Wellcome Trust, Ipsos Mori One-Way Mirror Report identifies four 'key tests' for public acceptability of commercial use of health data [24]:…”