Public engagement with health data governance: the role of visuality

Abstract

Over the last years, public engagement has become a topic of scholarly and policy debate particularly in biomedicine, a field that increasingly centres around collecting, sharing and analysing personal data. However, the use of big data in biomedicine poses specific challenges related to gaining public support for health data usage in research and clinical settings. The improvement of public engagement practices in health data governance is widely recognised as critical to address this issue. Based on OECD guidance, public engagement serves to enhance transparency and accountability, and enable citizens to actively participate in shaping what affects their lives. For health research initiatives, this provides a way to cultivate cooperation and build public trust. Today, the exact formats of public engagement have evolved to include approaches (such as social media, events and websites) that exploit visualisation mediated by emerging information and communication technologies. Much scholarship acknowledges the advantages of visuality for public engagement, particularly in information-dense and digital contexts. However, little research has examined how health data governance actors utilise visuality to promote clarity, understandability and audience participation. Beyond simply acknowledging the diversity of possible formats, attention must also be paid to visualisations’ rhetorical capacity to convey arguments and ideas and motivate particular audiences in specific situations. This paper seeks to address this gap by analysing both the approaches and methods of argumentation used in two visual public engagement campaigns. Based on Gottweis’ analytical framework of argumentative performativity, this paper explores how two European public engagement facilitators construct contending narratives in efforts to make sense of and grapple with the challenges of health data sharing. Specifically, we analyse how their campaigns employ the three rhetorical elements logos, ethos and pathos, proposed by Gottweis to assess communicative practices, intermediated and embedded in symbolically rich social and cultural contexts. In doing so, we highlight how visual techniques of argumentation seek to bolster engagement but vary with rhetorical purposes, as while one points to health data sharing risks, the other focuses on benefits. Moreover, drawing on digital and visual anthropology, we reflect on how the digitalisation of communicative practices impacts visual power.