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- Convenors:
-
Hanna Ehrlich
(Princeton University)
Arbel Griner (Princeton University)
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- Format:
- Traditional Open Panel
Short Abstract
This panel explores participatory surveillance as both critique and practice. It asks if and how collective forms of sensing, measuring, and anticipating health can re-orient surveillance toward reciprocity, ethical collaboration, and multispecies care in times of crisis and uncertainty?
Description
Surveillance, as theorists of discipline and control have long noted, operates not only through observation but also through internalization. In global health, these dynamics have intensified under regimes of biosecurity, where military and intelligence logics shape how societies imagine and manage “natural” and “man-made” threats. Within this apparatus, surveillance often becomes self-perpetuating – producing metrics and models that evolve independently of their social or ecological effectiveness. Unevenly distributed, such infrastructures frequently reproduce the very vulnerabilities they claim to mitigate.
Participatory surveillance – a practice that emerged in veterinary epidemiology in the 1980s – offers a reorientation toward a more dialogical and situated approach. Developed in resource-limited contexts that have long served as sites of global health intervention, it integrates local and expert knowledge through participatory mapping and narrative inquiry. Engaging both human sentinels and non-human cues, it invites reflection on what it means to anticipate disease across species boundaries and how more-than-human dynamics shape the futures of health. Yet these systems often fall short of their transformative promise. We ask: How might participatory surveillance respond to uncertainty while effectively redistributing epistemic authority and responsibility? How can it engage with more-than-human entanglements and reconfigure preparedness as a collective practice of care?
Proposed jointly by a disease ecologist and an STS scholar, this panel invites empirical and theoretical contributions that examine the potentials and limits of participatory surveillance across health, educational, environmental and other domains. In thinking and practicing a More than Now, we invite scientists and humanists to reconsider how anticipatory practices might nurture resilience – not as prediction or control, but as an ongoing commitment to shared, more-than-human futures.
Accepted papers
Session 1Paper short abstract
CGM is not just self-tracking. Comparing France and China, I show how reimbursement vs limited coverage shifts glucose monitoring from clinics to kin. Using policy documents and Chinese social media, I argue “kinship-based participatory surveillance” blurs care and control.
Paper long abstract
Continuous glucose monitoring (CGM) is often framed as a neutral device for individual “self-management.” I approach it instead as participatory surveillance: glucose sensing becomes a shared practice, organized through institutions, platforms, and everyday relationships.
A comparison between France and China helps clarify what is at stake. In France, reimbursement rules and clinical eligibility criteria largely keep CGM within professionalized care. Based on policy and reimbursement documents, access is negotiated through prescriptions and follow-up routines, and interpretation is expected to remain tied to the health system (endocrinologists, diabetes nurses, pharmacies). Some monitoring labor is redistributed beyond the household. In China, where public coverage remains limited, CGM is often put together through intergenerational arrangements. Adult children may buy sensors, set up apps, and translate dashboards into advice for parents across distance—not simply as “filial piety,” but as a moral response to uneven public provision and uneven data literacy. Kinship works as an infrastructure of anticipatory care and shifts interpretive authority: who gets to define risk, decide when to intervene, and imagine “metabolic futures.”
This participation is not seamless. Family monitoring can trigger negotiation, selective silence, or deliberate disconnection. Empirically, I combine document-based comparison of reimbursement regimes with exploratory digital ethnography of Chinese social media discussions, tracing how people post glucose screenshots, talk about costs and brands, and narrate “low-sugar” living together with family oversight. I call this dynamic “kinship-based participatory surveillance” to show how wearables redistribute care, authority, and stigma under chronic uncertainty.
Paper short abstract
This paper examines a participatory dengue surveillance experiment in Burkina Faso using Mosquito Alert,a smartphone app. Combining citizen observation, machine-learning identification, and expert validation, it cultivates “vector publics” whose attention generates actionable epidemic intelligence.
Paper long abstract
This paper examines participatory surveillance as an experiment in cultivating situated forms of epidemic intelligence. It draws on DengRIP (Dengue Risk Investigation for Preparedness), a collaborative research initiative in Burkina Faso exploring community-based mosquito surveillance using the Mosquito Alert smartphone platform. Combining citizen reporting, machine-learning–supported species identification, and expert validation, the project develops distributed forms of sensing across everyday environments.
Mosquitoes are dispersed, intermittent, and embedded in urban micro-ecologies; no centralized surveillance system detects them as consistently as those who live alongside them. DengRIP therefore mobilizes everyday observation—photographs of mosquitoes, breeding sites, and nuisance bites—linking reports to expert classification and geolocated mapping to produce locally actionable assessments of mosquito presence.
I argue that such initiatives cultivate vector publics: provisional collectives formed around shared exposure to mosquitoes and the consequences of living with them. These publics do not promise predictive certainty or comprehensive control. Instead, they generate capacities to respond amid ecological volatility by aligning heterogeneous forms of knowledge—embodied perception, neighbourhood experience, entomological expertise, and machine-learning classification.
Foregrounding a “politics of propinquity” (Copjec and Sorkin 1999), participatory surveillance operates less as a technology of prediction than as a relational infrastructure for cultivating shared attention and collective judgment. Through mobile reporting, expert validation, and neighbourhood discussion, mosquito presence becomes perceptible and actionable—organising partial observations and uneven expertise into forms of proximity that sustain response within disturbed urban ecologies.
Paper short abstract
Examining Oropouche fever in Pernambuco, Brazil, this paper explores how time and surveillance shape the recognition of epidemics. As institutional monitoring stall
Paper long abstract
In this presentation, we explore time and surveillance as categories of power through the case of Oropouche fever surveillance—and its neglect—in the state of Pernambuco, Brazil. Endemic to the Amazon region, the Oropouche virus (OROV) spread southward in 2024, affecting populations in the Northeast and Southeast regions of the country and appearing in the first documented cases of vertical transmission. Transmitted by biting midges locally known as maruim, the virus profoundly disrupted everyday life as fetal losses interrupted families’ plans for parenthood. Yet the characteristics of Oropouche fever did not mobilize a strong public health response. Unlike Zika, dengue, and other arboviruses circulating in the region, the disease was not declared a health emergency, and surveillance infrastructures remained largely inactive. In this context, affected families and communities began to track symptoms, pregnancies, and losses among themselves, developing informal practices of anticipation and vigilance. For the first woman to lose her baby to OROV, monitoring the emergence of new suspected cases became a way of making sense of her own loss and warning others. By examining these community practices alongside institutional surveillance systems, the paper highlights the tensions between participatory and state-based forms of monitoring and asks how different temporalities of evidence, care, and anticipation shape the recognition—or neglect—of emerging diseases.
Paper short abstract
This talk explores participatory animal health surveillance in pastoralist and conservation landscapes in central Kenya. Drawing on early fieldwork, I examine how livestock keepers, conservancies, and state actors perceive opportunities and barriers to community-based disease reporting.
Paper long abstract
This paper examines participatory surveillance of animal disease as both a technical proposal and a political project, situated in pastoralist and conservation landscapes in Laikipia County, Kenya. Drawing on exploratory fieldwork, including household surveys and conversations with pastoralists, livestock managers, and conservation actors, as well as more traditional epidemiological research, I consider how different stakeholders imagine participation in animal health surveillance systems. Preliminary findings suggest that while many livestock keepers express willingness to report unusual illness events, participation is often contingent upon expectations of reciprocity, including access to veterinary services, timely information, and trust in the institutions receiving the data.
Situating these perspectives within the broader governance landscape of wildlife conservation, state veterinary authority, and development interventions, the paper asks where participatory epidemiology might meaningfully reshape disease surveillance and where it may reproduce existing asymmetries of expertise and responsibility. Rather than treating participation as a purely technical fix for gaps in surveillance coverage, I argue that participatory systems must be understood as negotiated infrastructures embedded in social, ecological, and political relations. Examining the promises and limits of participatory surveillance in pastoralist Kenya, the paper reflects on how collaborative approaches to animal health monitoring might be designed in ways that acknowledge local knowledge, multispecies entanglements, and the uneven distribution of responsibility for managing emerging disease risks.
Paper short abstract
Self-tracking entails ongoing anticipatory waiting. Data are encoded through sensors and algorithms, while meaning is deferred to future insight. Based on a qualitative study of wellness users of continuous glucose monitors, this paper shows how tracking sustains perpetual waiting for better health.
Paper long abstract
Everyday AI systems for self-tracking often involve different degrees of anticipatory waiting, either to ensure something potentially negative has been prevented, or to be able to ‘diagnose’ when something negative is happening. Yet for many self-trackers, waiting has no clear endpoint and through their tracking practices, they are offered more data, more observations, and more suggestions from these systems such that waiting becomes a permanent way of life. Drawing on encoding/decoding theory, this paper argues that self-tracking is organised around temporal delays and waiting between data production and meaning-making. On the encoding side, bodily signals are continuously encoded through sensors, algorithms, data visualisations and nudges. Decoding, however, is deferred and repeatedly postponed, such that meaning comes to be positioned as a future achievement that will eventually emerge over time if the individual is patient enough, attentive enough, and generally engaged in tracking themselves. In this way, self-tracking technologies create the illusion that such a comprehensive understanding of oneself and one’s health is possible. Empirically, the paper is based on a qualitative study that combines online observation, interviews and data walkthroughs with people who use continuous glucose monitors (CGM) for wellness purposes. The analysis shows how self-tracking situates people in a temporal structure of anticipatory waiting for an ever-improving future state of health, sustained through practices to maintain oneself as a trackable human being who is constantly in the wait for new interpretation and meaning, often with the help of peers in decoding and interpreting their data.
Paper short abstract
Drawing on research with users and developers of the patient-led hybrid closed-loop diabetes system AAPS, the paper examines it as a site where surveillance is reworked into a collaborative and situated temporal practice, balancing predictability, uncertainty, and responsibility.
Paper long abstract
The paper examines patient-led hybrid closed-loop diabetes systems as a form of participatory surveillance that reconfigures how health is embodied, measured, and anticipated. In type 1 diabetes management, maintaining viable relations between exogenously administered insulin and the body has traditionally relied on strict, often unmanageable regimens. In contrast, hybrid closed-loop systems promise personalized and adaptive forms of care through data-driven technologies. Yet rather than resolving uncertainty, these systems foreground it as a site of ongoing negotiation.
Drawing on qualitative research with users and developers of the patient-led system AndroidAPS, we explore how diabetes care emerges through the alignment of heterogeneous temporalities and distributed forms of bodily and algorithmic memory. While co-constitutive, these forms of memory remain only partially synchronized, operating at different speeds, scales, and logics of retention and erasure. While bodies may retain metabolic traces that algorithms have already recalibrated away, algorithms may preserve patterns that bodies have already moved beyond.
The paper argues that these systems enact a form of participatory surveillance between algorithmic actions, bodily responses, and users’ decisions, continuously negotiating what counts as relevant past data and actionable futures. At the same time, developers design algorithms that connect past data to anticipated metabolic trajectories while pursuing ethical collaboration in balancing adaptability and safety.
By foregrounding temporal misalignment as intrinsic rather than problematic, the paper reframes hybrid closed-loop systems as sites where surveillance is reworked into a collaborative and situated practice of technological and bodily temporalization, balancing anticipation, predictability, and uncertainty.
Paper short abstract
PROMs are widely promoted in healthcare, yet their clinical use remains unsettled. Attending to the collectiveness of PROM responses, this paper shows how data collection produces epistemic double vision as nurses navigate tensions between standardized data production and situated care.
Paper long abstract
While patient-reported outcomes (PROMs) are promoted as instruments for patient-centred and efficient healthcare, their integration into practice remains in its early stages. Moreover, the production of PROM data is suspended between the present, where accurate responses are generated, and the future, where data is expected to improve care for both individuals and the collective. In dialogue with the panel’s interest in participatory surveillance, this paper examines how PROM-collection intertwines with nursing practice. Existing research shows that PROM-collection requires sustained effort from professionals, yet less attention has been paid to how this work is managed practically and affectively.
Drawing on empirical data from clinical encounters between lung cancer patients and nurses assisting them with PROM questionnaires, we show how this data work gives rise to what we term epistemic double vision. Inspired by McClimans’ depiction of contemporary medicine as Janus-faced, the concept captures how nurses orient toward two epistemic demands: a future turned data optic emphasizing objectivity and decontextualized responses, and a situated care optic requiring interpretive engagement with patients in the present. Nurses attempt to rely on the data optic to produce “clean” data, yet their situated care optic repeatedly blurs this orientation, prompting interpretation and adjustment. This makes PROM-collection feel disruptive, though nurses also note that PROMs can deepen dialogue with patients. Attending to the collective dimension of data production reveals that producing healthcare data is a distinct form of care work that shapes data and raises questions about how new data practices are woven into existing routines.