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- Convenors:
-
Barbara Morsello
(University of Padova)
Valeria Quaglia (University of Bologna)
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- Format:
- Traditional Open Panel
Short Abstract
What if the boundaries between health activism and influencing blur? This panel examines how platformization transforms participation, expertise, and the politics of health communication in digital environments.
Description
Digital platforms are transforming the ways health, illness, and bodies are experienced, communicated, and governed. This ongoing platformization of health reconfigures long-standing forms of participation, expertise, and activism that STS has explored for decades. Forms of participation from below, such as evidence-based activism and biocitizenship, find new spaces and opportunities for enactment, while refused-knowledge communities bring their marginalised claims to wider audiences. This scholarship has shown how patients and lay people mobilise expertise to contest biomedical authority and democratise knowledge online. Today, however, these participatory practices increasingly unfold within platform infrastructures driven by algorithmic visibility, monetisation, and datafication. These socio-technical transformations reshape subjectivity, embodiment, and the politics of participation.
This is particularly evident in the emerging figure of the health influencer, ranging from patient-influencers to healthcare professionals active on digital platforms, raising the question of whether these actors represent a continuation of activism or rather a substantially different phenomenon. Increasingly, it has been noted that the boundaries between these two modes of communicating and enacting health online appear blurred. While health activism has historically relied on collective action, solidarity, and contestation, influencer practices centre on individual branding, visibility, and partnerships with institutions and companies. They amplify patient voices and peer knowledge, yet also risk reproducing inequalities and spreading commercialised or low-evidence content.
In line with the conference theme of exploring resilient socio-technical futures, this panel asks: what if the boundaries between health activism and health influencing increasingly blur? How might such entanglements shape the future of digital health communication, and what forms of resilience, empowerment, and accountability could emerge?
We invite empirical and theoretical contributions that address, but are not limited to:
• Shifting repertoires, solidarities, and lay expertise from activism to influencing;
• Authority, legitimacy, and accountability in digital health cultures;
• Algorithmic visibility, monetisation, and inequality;
• Platform agency in reshaping health communication and imaginaries of resilient futures.
Accepted papers
Session 1Paper short abstract
Menstrual cycle tracking apps combine feminist empowerment, scientific knowledge, medical advice, and commercial logics. Drawing on interviews and interface analysis, this presentation examines how these apps blur activism and influence while shaping women’s health infrastructures.
Paper long abstract
Menstrual cycle tracking apps (MCTAs) have become everyday technologies for millions of people, positioning private digital technoservices at the center of contemporary women’s health innovation. Indeed, the most widely used apps are not limited to simple calendars for tracking past and predicting future menstrual cycles. A significant part of their activity involves producing media content (videos, podcasts, articles, encyclopedic resources) and health-, nutrition-, or well-being–related advice, delivered within the apps in personalized ways based on users’ data, through notifications, daily advice, and chatbots.
Moreover, MCTAs promote discourses that valorize feminist ideals of empowerment through knowledge and the reappropriation of gynecological expertise by women. Such discourses are present both among app founders and among users, whose motivations frequently reflect a desire to challenge conventional gynecological and pharmaceutical narratives surrounding women’s health and fertility. These activist framings are reinforced by the use of MCTA data for women’s health research, a field that is chronically underfunded and increasingly threatened in some countries, including the United States.
At the same time, MCTAs are commercial platforms whose business models rely on algorithmic visibility in app stores, personalized health predictions and guidance through paid subscriptions, as well as on capturing users’ attention within the app ecosystem.
MCTAs are relevant for examining the blurring of boundaries between activism and influencing, and between scientific popularization and commercialized content. Drawing on interviews with designers and scientists (n = 54) and interface analysis, we examine how economic, scientific, and medical stakes shape these applications’ infrastructures and operations.
Paper short abstract
On TikTok, young people with metastatic breast cancer chronicle their experiences of living with their disease. How do these modes of representation draw from established influencer practices, and how do they distinguish themselves as health creators?
Paper long abstract
On TikTok, young people with metastatic breast cancer (MBC) chronicle their experiences of living with their disease in videos that explain what is currently happening with their treatment. Created on a relatively regular basis, “health update” videos keep their followers informed on a range of health-related phenomena, such as their experiences of chemotherapy side effects, their latest scan results, changes to their treatment plans, or accounts of their general mood and energy levels. Emotion and information are key parts of these updates – creators will often get emotional while filming, and other times, position themselves as educators, who take time to answer commenters’ questions and provide additional information about MBC where possible, drawing from their own expertise. They provide a “display of the hidden inner life” (Marwick 2013). TikTok’s conventions and norms – which favor casually produced materials and allow for serious discussions of heavy topics – have created conditions in which advocacy work can circulate with ease and where substantial dialogue via comment sections and response videos are commonplace.
I examine MBC health updates posted by young people on TikTok, and ask, what patterns and trends characterize MBC update videos? What forms of media accounting (Humphreys 2018) do their creators use to disclose their diagnosis and explain its meaning? How might we understand the work of chronicling MBC as part of a feminist documentational praxis? In what ways do these modes of representation draw from established influencer practices, and in what ways do they distinguish themselves as health creators?
Paper short abstract
Using a Turkish X community combating medical misinformation as a single case, this paper examines how platformized expertise, boundary work, and fragmented accountability reconfigure digital health communication and blur the line between health activism and health influencing.
Paper long abstract
This paper examines, as a single-case study, a digital community on X (Twitter) in Turkey that is organized around combating medical misinformation and includes many health professionals among its members. Rather than treating medical misinformation simply as the circulation of false information, the study conceptualizes it as a process through which expertise, legitimacy, and accountability are reconstituted within platform environments. The paper is based on a qualitative case study and discourse analysis of community rules, posts, and administrator content on X. Although the community presents itself as a collective initiative aimed at protecting the public from harmful health claims, content production and visibility are concentrated largely around expert accounts and administrator figures. The fact that the community’s leadership structure consists largely of physicians suggests that authority within the community is organized based on expertise. The analysis shows that expertise is performed through medical titles, citation practices, the language of evidence, and corrective interventions. Beyond circulating “accurate information,” posts also function to draw boundaries and distribute legitimacy by determining who is marked as “scientific” and who is labeled as “pseudo-scientific” or a “charlatan.” The tension between norm-setting and administrators’ refusal to assume responsibility for content reveals how platformized authority and fragmented accountability operate together. In this way, the paper discusses how X’s logics of visibility, polemic, exposure, and viral correction reshape evidence-based health communication and transform the boundaries between health activism and health influencing.
Paper short abstract
Digital platforms reshape patient activism and lay expertise around contested diseases. Drawing on digital ethnography of Lyme communities on Facebook in Poland, this paper examines how platform affordances blur the boundaries between health activism and political influencing.
Paper long abstract
Digital platforms have become key arenas where contested diseases are negotiated, experienced, and politicised. In the case of Lyme disease, one of the most controversial infectious diseases in Europe, patients, activists, clinicians, and journalists mobilise online spaces to produce and circulate competing forms of expertise. Yet these practices increasingly unfold within platform infrastructures structured by algorithmic visibility, engagement metrics, and attention economies.
This paper examines how the platformization of health reshapes the production and legitimacy of lay expertise in the context of Lyme disease controversies in Poland. Drawing on digital ethnography of Facebook groups, interviews with patients and activists, and analysis of media discourse, I explore how people navigate what I conceptualise as the “Internet of Lyme.” Within these environments, personal testimonies, biomedical claims, alternative therapeutic knowledge, and media narratives circulate together, forming heterogeneous epistemic assemblages.
I argue that digital platforms are transforming earlier modes of patient activism centred on collective mobilisation and knowledge contestation. This transformation produces new forms of authority and vulnerability. On the one hand, platforms enable patients to challenge biomedical gatekeeping and build solidarities around contested illness. On the other, the logic of platform visibility can privilege emotionally charged narratives, blur distinctions between advocacy and influence, and intensify conflicts over expertise. By analysing Lyme disease as a platform-mediated knowledge controversy, the paper contributes to STS debates on digital health participation, epistemic authority, and the shifting boundaries between activism and influencing in contemporary platform societies.
Paper short abstract
Most platforms in health operate in for-profit contexts, promising efficiency, connectivity, and visibility, but this organisational form also holds promise to serve the common good. We examine one such platform to broaden our conceptualisation of platforms and their added value in health.
Paper long abstract
Platformisation is one of this century’s most critical societal trends. The platformisation of health has been studied predominantly in for-profit contexts, giving rise to critiques along the lines of ‘googlisation’. Yet the platform as an organisational form also holds potential to be harnessed for the common good. We offer a broadened conceptualisation of platforms to include those serving the common good, illustrated by an ethnographic study of a publicly-funded drug repurposing platform (REMEDi4ALL), which incentivises the use of ‘old’ medicines for ‘new’ indications. Promising fast and low-cost drug development for all, the REMEDi4ALL platform challenges existing for-profit models of medical innovation, enables exchange of patient and professional expertise, and builds upon public-private partnerships. While riding the same waves of promised efficiency, connectivity, and visibility as most digital platforms in health, we show that platforms for the common good do not centre on individual visibility but foreground patient community and promote commodification rather than assetisation, inclusion over extraction, and diversification over monopolisation. Along with these characteristics, we discuss the precarious position of common good platforms like REMEDi4ALL as they continue to depend on public funding.