Conference Agenda

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Session Overview
Health 1: Digitising Health
Thursday, 03/Nov/2022:
11:00am - 12:30pm

Session Chair: Michelle Riedlinger
Location: CQ-512

60 seat lecture hall

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Viral health misinformation from Geocities to COVID-19

Shawn Walker, Kristy Roschke, Djordje Padejski, Michael Simeone, Anna Muldoon, Major Brown

Arizona State University, United States of America

Although often discussed in the public discourse as a phenomenon newly exacerbated by social media, the use of the Internet to spread health-related misinformation is as old as the Internet itself. Techniques, networks, and narratives from prior novel health outbreaks such as HIV or Ebola continue to circulate and are repurposed in the current COVID-19 pandemic. We examine and compare two case studies of health misinformation — HIV mis/disinformation in from the mid-1990s to early 2000s circulating in GeoCities and the role of official COVID-19 Dashboards in present-day COVID-19 mis/disinformation. This contributes to our understanding of current and historical health misinformation as well as the connections between them.


Stefania Vicari

The University of Sheffield, United Kingdom

We investigate the interplay of platform mechanisms and user tinkering in relation to invisible health conditions and ultimately challenge approaches that picture platforms as either hegemonic or liberating. We draw on initial findings from a project focused on social media uses relevant to hereditary cancer syndromes. These conditions are invisible in at least three ways. Cancer genetic risk is evidence-based and embodied, but not bodily visible. General health practitioners rarely know about hereditary cancer syndromes. Overall, hereditary cancer syndromes have not yet entered the wider collective imagination.

Existing research provides evidence that individuals with these conditions turn to social media to seek, learn, produce and share information. However, little do we know about how these practices form at the intersection of embodied experiences, everyday social media uses, and platform mechanisms. In this paper we explore these dynamics drawing on a social media analysis that incorporates data from Twitter, Facebook, TikTok, and Instagram and combines computational and ethnographic techniques.

When it comes to invisible health conditions, the voice of ordinary social media users easily overcomes that of traditional elites. Local platform mechanisms differently shape how information is shared and who and what become more visible and credentialed in these sharing practices. They also influence how and which personal experiences are more curated and shared. These initial findings suggest that social media platforms are essential in making the invisible visible but raise questions on how participating in one or more platforms’ “local worlds” might affect the lived experience of those who embody this invisible.


Anna Catherine Hickey-Moody

RMIT University, Australia

This paper explores ‘systems’, or practices, of internet and digital media use that are chosen by young members of minority faiths in Australia. These practices are framed in terms of digital health and positioned as a possible alternative to digital mental health resources that are developed in clinical contexts. My ethnographic research shows that such applications, while designed to improve the mental health of young people, are not used at all in minority faith cultures. In my fieldwork I observe a substantial amount of engagement with networked screen media that can be understood as a way of increasing feelings of wellbeing. Examples of these ‘wellbeing’ practices include watching youtube streaming of soap operas from a home country (recorded in a young person’s first language), networked games that allow young people to connect to their friends and family (some of whom are in other countries), youtube channels on which young people broadcast their expert gamer tips, and many more. The young people from whom these examples are sourced are part of communities with high risk factors for mental health issues. This ethnographic data leads me to ask for the decolonization of the implicitly raced, classed and gendered natures of ‘digital health apps’ as they are popularly described. I look at the power of using online systems in subcultural ways. I gesture towards an algorithm of the edges, a political change that of course becomes systemic.


Magdalena Pluta, Piotr Siuda

Kazimierz Wielki University in Bydgoszcz, Poland

The presented paper characterizes TikTok practices of users with cancer and uses notions of social media as positive culture (presenting oneself without undesirable traits) and online self-disclosure understood as providing intimate, private information about oneself. The research continues the work on self-disclosure of women with breast cancer using Instagram. However, this previous research revolved around posts, and thus was limited. The current study on TikTok asks the following questions: 1) are TikTok videos disclosing information in the manner the previous research on Instagram shows? 2) What are the creators’ motivations and what meanings do they give to disclosing cancer and how do the users position themselves considering the positive culture? The study uses categories from previous work and combines qualitative directed content analysis (DCA; 862 videos are analyzed) with in-depth interviews (n=8), and these go beyond DCA to a more nuanced understanding of the users’ lived experience. Similar to Instagram, TikTok is a tool for negative (e.g., fears, anxiety, pain) and positive self-disclosure (e.g., joyful life events, self-acceptance, self-affirmation) with the prevalence of positive and educational videos (e.g. prevention, debunking stereotypes and normalizing the disease). The respondents feel especially competent to educate others because of their experiences. The research undermines the traditional understanding of online self-disclosure, as for users seeking support is not that important, compared to informing and warning others. Also, the study debunks positive culture as a too-general category, as the interviewees constitute a particular niche and seem not to care how they are perceived while disclosing cancer.

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