The hidden assumptions in public engagement: A case study of engaging on ethics in government data analysis

Abstract

This study examines the hidden assumptions around running public-engagement exercises in government. We study an example of public engagement on the ethics of combining and analysing data in national government -often called data science ethics. We study hidden assumptions, drawing on hidden curriculum theories in education research, as it allows us to identify conscious and unconscious underlying processes related to conducting public engagement that may impact results. Through participation in the 2016 Public Dialogue for Data Science Ethics in the UK, four key themes were identified that exposed underlying publicengagement norms. First, that organizers had constructed a strong imagined public as neither overly critical nor supportive, which they used to find and engage participants. Second, that official aims of the engagement, such as including publics in developing ethical data regulations, were overshadowed by underlying meta-objectives, such as counteracting public fears. Third, that advisory group members, organizers and publics understood the term 'engagement' in varying ways, from creating interest to public inclusion. And finally, that stakeholder interests, particularly government hopes for a positive report, influenced what was written in the final report. Reflection on these underlying mechanisms, such as the development of meta-objectives that seek to benefit government and technical stakeholders rather than publics, suggests that the practice of public engagement can, in fact, shut down opportunities for meaningful public dialogue.

Participatory codesign of patient involvement in a Learning Health System: How can data‐driven care be patient‐driven care?

“…43 Health data initiatives have been criticized for adopting a language of empowerment despite constraining patients to passive roles 44 and health data discussions have been criticized for focusing on 'calming controversies'. 45,46 In health system change, conflict can be both inherent and also beneficial. 47 Although on a small, singleproject scale, we have demonstrated how debate and constructive disagreement can lead to richer discussions that produce outputs that are credible and meaningful for both patients and researchers.…”

Involving service users in Births and their outcomes: a retrospective birth cohort data linkage study analysing daily, weekly and yearly cycles and their implications for the NHS

“…Service users had concerns and interests that only partially overlapped with those of researchers. So, while all of the authors value the principle of co-production, in the real world of data linkage research there are tensions between competing demands and different worldviews [ 65 ]. On reflection, it was ambitious to combine setting up the complex data linkage infrastructure and testing alongside the PI&E work, which involves quite different skills and priorities.…”

“…There are, however, complex ethical issues inherent in the use of public health data and it is important not to gloss over the conflicts and challenges in carrying out data linkage research and attempting to work with the public as equals [ 65 ]. On one hand, it can be argued that greater public awareness of the use of routinely collected health data would be beneficial as the ethical issues involved affect everyone [ 33 ], but it cannot be guaranteed that the public, in gaining awareness, will feel confident with data linkage research [ 65 ]. There has been public disquiet about issues of privacy, consent and security, with concerns that data could be exploited for commercial purposes [ 65 ].…”

“…On one hand, it can be argued that greater public awareness of the use of routinely collected health data would be beneficial as the ethical issues involved affect everyone [ 33 ], but it cannot be guaranteed that the public, in gaining awareness, will feel confident with data linkage research [ 65 ]. There has been public disquiet about issues of privacy, consent and security, with concerns that data could be exploited for commercial purposes [ 65 ]. Thus, social and moral legitimacy to process data is as important as the legal authority [ 66 ].…”

“…Thus, social and moral legitimacy to process data is as important as the legal authority [ 66 ]. For example, public confidence about the use of NHS data in England was undermined by NHS England’s proposals for its ‘care.data’ system, with wider concerns about the possible sale of personally identifiable data to private companies [ 65 , 66 ]. This proposal provoked a public outcry [ 67 ] which resulted in NHS Digital, the organisation with responsibility for health data in England, restricting access to data for publicly funded research including the Birth Timing study.…”