Abstract
In response to the contemporary forms of participation through mundane digital practices during the Covid-19 pandemic, Digital Media and Participatory Cultures of Health and Illness, written by Stefania Vicari, is a timely book that offers an up-to-date insight into the everyday participatory cultures of health and illness on digital and social media platforms at both methodological and conceptual dimensions. Drawing on empirical research on digital activist practices and ordinary forms of digital engagement, this book addresses a core issue about how digital media has become more centralized to how we live, feel, comprehend, and create our personal and social interactions with health and illness.
The book consists of three main parts. The first part begins with the conceptualization of key topics including digital media, participation, citizenship, health advocacy and activism. Chapter 2 starts with a short history from the 1990s that questioned the role of the media and pre-digital modes of participation, as well as their substance and power structures. It then explores the development and shift of Western media ecosystem, notably in the production, consumption and use of media material, as well as how these shifts have shaped participatory practices. Produsage, platformization, and datafication are three terms that have been central to the engagement of contemporary digital media study. The following chapter draws on a wealth of diverse research on online discursive acts to argue that through new user-generated curation methods and visual cultures, counterpublics and networked publics are developing as a result of public sphere dynamics.
After mapping out how contemporary participatory practices are increasingly shaped by digital platforms and their politics, Chapter 3 concerns the discussion about the concepts and theories in the context of health advocacy and activism. By initially providing definitions and actors of health advocacy and activism, Vicari engages with examples of patient activism like the French AIDS and autistic movements and argues that in the past three decades patient advocacy organizations have pushed for the gradual inclusion of patient perspectives and transformed from “auxiliary models of collaborations” to “concrete partnerships” (p. 62) comprising patients, families and key stakeholders. The notions of illness identities and narratives are then discussed to enhance the form of self-advocacy in health activism, “putting the self at the centre of health advocacy messages” (p. 62). Vicari concludes this chapter by discussing the close engagement with knowledge creation and frequent dealing with both beneficial intersections and antagonistic conflicts of lay and professional knowledge, and applying these ideas to examine rare disease patient communities.
The second part moves on to the research findings connected to digitized and networked health. In Chapter 4, Vicari identifies how Information and Communication Technologies (ICTs) have been conceptualized since the emergence of early digital practices in terms of health and illness. Two significant paradigms are proposed in addressing the ICTs conceptualization: the service delivery paradigm and the epatient paradigm. Specifically, the service delivery paradigm holds that ICTs are tools for enhancing the delivery of health services from providers to consumers. Rather than as “conduits for the delivery of health care,” the epatient paradigm sees ICTs as a method for “patients’ knowledge acquisition, production and exchange” (p. 74), and believes that online platforms regard patients as more directly engaged with their self-care and the care of others both individually and collectively. By connecting the concepts as discussed in the first part of the book, Chapter 5 focuses on the properties of digital media and communication for rare disease patient organizations and networks. Drawing on empirical research undertaken by Stefania Vicari and Franco Cappai in 2016, Vicari investigates how organization websites define the identity and remit of action of rare disease patient advocacy and emphasizes the role of digital media affordances in developing bottom-up sharing and co-production of health knowledge, individualized means of public engagement, and health information pathways.
By specifically analysing health and illness on Western mainstream social media, the final part of the book focuses on mundane participatory cultures on contemporary digital platforms. Through drawing upon empirical research on Twitter between 2017 and 2020, Vicari explores four dimensions of dynamics that have been considered as highly relevant to digital participatory cultures and health advocacy in Chapter 6—curation, framing, storytelling, and epistemic work. A set of reflections on interactions that exists between mainstream social media platforms and participatory cultures of health and illness are provided as concluding remarks of the chapter. Chapter 7 then turns to draw attention on digital health platforms. Vicari initially explores the political economy of the technological infrastructure of digital health platforms, and then progresses by focusing on everyday digital health experiences to see how and to what degree users “resist structures and norms” (p. 143) that are built into the design and logic of contemporary digital health platforms.
To underline the key contributions of the book, Vicari ultimately compiles five essential elements that need to be taken into consideration when analysing digital participatory cultures of health and illness in the concluding Chapter 8, namely digital participation as connective, personalized and crowdsourced agency, the media side of digital participation, lay expertise as a digital participatory practice, the corporate gateways of digital participation, and digital participation as platformed.
Overall, digitalization has influenced our everyday life and has in turn gradually changed the way we understand society. One remarkable strength of this book is that with accessible and engaging examples extracted from empirical research, it transcends our understanding of the social media and critically contributes to the thriving field of digital media by bringing together interdisciplinary insights from sociology of health and illness and science and technology. This offers new frontier horizons for scholars and researchers interested in digital media, digital sociology, social movement studies, digital activism and health advocacy. The focus on digital participation cultures on contemporary social media platforms ultimately reflects on why and how the digital is critical when it comes to understanding participatory cultures of health and illness in modern civilizations. A weakness is the lack of empirical examples and practices on non-Western contexts. As Vicari also points out in the book, the digital platforms and networks explored in the book are primarily drawn upon Western ones. An in-depth understanding about the participatory cultures of health and illness in other societies is thus needed in future research in order to complete the picture through highlighting the cultural, social and political dynamics beyond the West.
