Warriors and Ninjas Online: Connective Health Action and Decision-making on the Example of Thyroid Disease

Abstract

This project focuses on health activism and its role for the decision-making and illness identities of patients. Specifically, it presents an investigation of health-related social action on social media in the domain of thyroid disease.

Social media platforms have become increasingly important for self-diagnosis and obtaining health information, particularly in the context of a lack of medical care. The structures of digital platforms can further encourage the politicisation of health topics, as they offer a context for the production of crowdsourced knowledge and the amplification of activist content. Hence, it is important to examine the nature and strategies of health-related social action online, and how such discourse shapes the decision-making and illness identities of specific patient groups.

With the emergence of networked collective action, i.e., connective action, these processes are more and more crowd- than organisation-based, challenging our understanding of what constitutes established knowledge, and expanding the discursive space around illnesses. Patients on social media are confronted with different viewpoints and commonly navigate content from many different sources related to their illness. Furthermore, the rise of professional amateurs marks a shift from the dominance by professionals to the inclusion of non-professionals in the realms of medicine and science, leading to an increased emergence of content-producing communities, and to a different way of setting standards for knowledge creation. This inquiry is an attempt to describe and further conceptualise such developments and the related emerging practices, paradigms, and strategies.

Thyroid disease represents a chronic disease of increasing global relevance, prevalence, and potential high societal costs. This case was primarily selected as it displays a global and diverse online health discourse led by different non-elite actors, and presents challenges to the medical authority. Activism for thyroid disease includes many characteristics of health social movements, for example health access, inequality and illness experience. This study contributes to a better understanding of these dimensions, as well as the socio-political aspects of thyroid disease. Further, to better understand all patients’ needs, we must get a better understanding of their information-seeking behaviour and the role of connective action for decision-making and illness identities.

This work uses the conceptual lenses of health activism, illness identity, connective action and social media affordances to investigate online activism for thyroid disease, the decision-making paradigms of patients, and the influence of digitally networked action on health-related social action. Drawing on a participatory netnography within activist spaces and 50 in-depth interviews (17 with activists, 33 with people with thyroid disease), this study contributes to the analysis of the socio-political dimensions of health with a focus on contemporary health activism and its influence on patients. Specifically, 2 set of inquiries (study 1 and 2) have been undertaken:

Study 1 focuses on the actors and derives a set of activist themes related to their strategic and political orientation on the basis of a participatory netnography (precisely interviews and interaction with advocates and activists for thyroid disease).

Study 2 focuses on the patients and proposes a typology related to the dimensions level of health activism (politicisation) and knowledge authority, based on salient strategic themes of health- related decision-making. Furthermore, the affordances of social media, role of connective action, and the context of politicisation (including issues such as gender and power dynamics) are addressed.

Based on the results of both studies, the term "connective health action" as a lens to study the communication dimensions of health-related social action in digital environments is offered. This part summarises distinctive elements and characteristics of a new mode of health activism focusing on the role of media practices for aspects such as identity, choice, and tactics, and offers further perspectives on research.

The results provide valuable input for researchers of health activism, illness identities and the socio-political dimensions of health, as well as practitioners who want to consider the potential of different audiences. Furthermore, the findings contribute to the study of an increasingly important discourse that has so far been under-investigated by health communication research, but should inspire the expansion of health activist theory, as research needs to integrate the new media perspective. This study seeks to close this gap by offering an investigation of connective health action from the perspective of both health activist and activist theory, and by depicting the strategic stances of both activists and patients. This can facilitate a better understanding of patients within shifting dynamics of power and care of today’s health care systems. The results can further inform investigations of the negotiation of shared beliefs on social media, which can support the consideration of different audiences, the recognition of patients’ subjectivities, and their potential to contribute to the medical discourse. Finally, making such actors and phenomena more graspable extends beyond the lens of thyroid disease with important impulses for health activist theory and practice in general.

Date of Award	22 Feb 2023
Original language	English
Awarding Institution	City University of Hong Kong
Supervisor	Marko SKORIC (Supervisor)