- Convenors:
-
Orsolya Bajer-Molnár
(Medical University of Vienna)
Julia Holzer (Ludwig Boltzmann Institute for Science Outreach and Pandemic Preparedness)
Christine Marizzi (Ludwig Boltzmann Institute for Science Outreach and Pandemic Preparedness (LBI SOAP))
Send message to Convenors
- Format:
- Workshop
Short Abstract
Engaging communities in pandemic preparedness is crucial. This interactive symposium explores how Citizen Science can enhance infectious disease monitoring, with case studies, group reflection, and scenario-building focused on marginalized populations.
Description
The necessity of partnering with the community in pandemic preparedness and prevention was emphasized by the COVID-19 pandemic. Anticipatory research depends on comprehensive epidemiological approaches targeting underrepresented communities with higher pathogen burden and exposure to social risk factors. Citizen Science (CS) has enabled public participation in applied research for over two decades. Incorporating CS in the tracking of infectious disease allows for earlier detection and better implementation of prevention measures. Furthermore, controlling for data interoperability, ethics, dual-use risks, as well as acknowledging citizen competence and autonomy allows for efficient upscaling and long-term sustainability of citizen-generated data. We will present case studies, followed by a group discussion where we dive deeper into the opportunities and challenges of community engagement in pandemic preparedness.
We propose an interactive symposium divided into three parts:
Plenary session presenting key topics within four case studies - LuPFiS, HPVienna, New York City Virus Hunters and InChildHealth (30 min):
Outreach
Co-development - identifying targets and incentives, scientific output and action
Data quality - potential for citizen data to contribute to traditional epidemiological sampling
Data structure - data types and infrastructure, upscaling and dissemination
Ethics - safety and data integrity for engaged participants
Brainwalk (30 min) - capturing participant’s lived experiences and challenges.
Scenario-development (45 min) addressing current emerging infectious disease in marginalized communities, discussing cases of pathogenic threats and societal vulnerabilities across geographical regions and social landscapes, and developing hypothetical action plans for establishing CS programs
Space requirements: meeting room with projector, pens and post-its, max. 30 participants.
Accepted contributions
Short Abstract
Ibercivis shares its experiences from the last 15 years regarding computing, symptom tracking, environmental monitoring, communities co-creation, and new health infrastructures, highlighting lessons in data governance, participation, and pathways for community-based pandemic preparedness.
Abstract
Citizen science can mobilize communities, generate distributed data, and open new forms of governance in health. Ibercivis has developed diverse initiatives that reveal both opportunities and challenges in connecting citizen science with pandemic preparedness and response. Volunteer computing projects such as COVID-PHYM, docking and folding simulations demonstrated the potential of distributed resources, but also raised issues of validation and transparency. Gripenet, an early influenza symptom-tracking initiative, exposed data interoperability gaps that resurfaced during COVID-19. Environmental and health monitoring projects—Vigilantes del Aire (air quality), OdourCollect (odour mapping), and OpenRed (radiation monitoring)—showed strong community impact while underlining the importance of standards, inclusivity, and institutional uptake.
Beyond data collection, Ibercivis has supported infrastructures and training through the Spanish Observatory of Citizen Science (ciencia-ciudadana.es) and EU-Citizen.Science. Current efforts include MultiEngage, which promotes multi-stakeholder engagement and co-creation with patients and other communities. Looking ahead, the RIECS-Concept will make health a focus domain for citizen science system design.
Together, these experiences highlight lessons in impact assessment, community building, and participatory design. They provide critical reflections on past challenges and concrete pathways for aligning citizen science with health research, policy, and behavior change, thereby strengthening community-based approaches to pandemic preparedness and response.
Short Abstract
Incorporating Citizen Science reporting of emerging infectious disease in humans and wildlife allows for earlier detection. Based on New York City Virus Hunters community science initiative we focus on the possibilities and challenges of community engagement in pandemic preparedness.
Abstract
Citizen Science has been instrumental in boosting public participation in applied research. Incorporating Citizen Science reporting of emerging infectious disease (EIDs) in humans and wildlife can allow for earlier detection by collecting data to create a baseline and to study transmission dynamics. In this short talk we will present the New York City Virus Hunters community science initiative, which is a collaboration between three New York City institutions: the science outreach organization BioBus, the Krammer laboratory at Icahn School of Medicine at Mount Sinai and the wildlife rehabilitation clinic Wild Bird Fund.
The talk will focus on the possibilities and challenges of community engagement in pandemic preparedness. We will outline 1) how the program infrastructure could serve as a crucial tool for pathogen monitoring and epidemic management, and 2) how CS could serve as a way of addressing societal inequalities by enabling access to pandemic preparedness. Attendees will walk away with best practice examples for interdisciplinary participatory action research, such as the New York City Virus Hunters.
Short Abstract
This talk discusses how psychologically informed design of citizen involvement in surveillance enhances pandemic preparedness. It explores how experienced competence, autonomy, and relatedness foster motivation and emotional resilience, bridging science and society through participatory engagement.
Abstract
In this contribution, we discuss how psychologically informed design principles may transform citizen involvement in infectious disease surveillance from a data-collection tool into an opportunity for learning, empowerment, and building bridges between science and society.
Psychological theory, and Self-Determination Theory (Ryan & Deci, 2000) in particular, can help practitioners design participatory disease surveillance initiatives that fulfill the basic psychological needs for competence, autonomy, and relatedness. Such psychologically informed design can foster intrinsic motivation for engagement with science, which may in turn promote adaptive behaviors and psychological resilience when facing uncertainty. Concretely, competence is supported when citizens receive adequate guidance, feedback, and recognition, enabling them to perceive their contributions as effective and valued. Autonomy is strengthened through voluntary participation, transparent communication, and opportunities for co-creation, which enhance ownership. Relatedness is fostered by creating collaborative and respectful relationships between citizens and scientists, promoting identification with the scientific community and trust in public health measures.
Leveraging Self-Determination Theory for effective pandemic-related citizen science, we bridge motivational psychology, health education, and public health. We highlight that satisfying basic psychological needs within participatory surveillance initiatives can increase both scientific literacy and emotional resilience through more intrinsically motivated citizen engagement. This in turn can foster more equitable and trustworthy relationships between citizens and institutions and turn citizen involvement from a tool for surveillance to a pathway toward a more scientifically engaged and literate, as well as resilient society.