World

A call for citizen science in pandemic preparedness and response: beyond data collection

Yi-Roe Tan, Anurag Agrawal, Malebona Precious Matsoso, Rebecca Katz, Sara L M Davis, Andrea Sylvia Winkler, Annalena Huber, Ashish Joshi, Ayman El-Mohandes, Bruce Mellado, Caroline Antonia Mubaira, Felipe C Canlas, Gershim Asiki, Harjyot Khosa, Jeffrey Victor Lazarus, Marc Choisy, Mariana Recamonde-Mendoza, Olivia Keiser, Patrick Okwen, Rene English, Serge Stinckwich, Sylvia Kiwuwa-Muyingo, Tariro Kutadza, Tavpritesh Sethi, Thuso Mathaha, Vinh Kim Nguyen, Amandeep Gill, Peiling Yap

Abstract

The COVID-19 pandemic has underlined the need to partner with the community in pandemic preparedness and response in order to enable trust-building among stakeholders, which is key in pandemic management. Citizen science, defined here as a practice of public participation and collaboration in all aspects of scientific research to increase knowledge and build trust with governments and researchers, is a crucial approach to promoting community engagement. By harnessing the potential of digitally enabled citizen science, one could translate data into accessible, comprehensible and actionable outputs at the population level. The application of citizen science in health has grown over the years, but most of these approaches remain at the level of participatory data collection. This narrative review examines citizen science approaches in participatory data generation, modelling and visualisation, and calls for truly participatory and co-creation approaches across all domains of pandemic preparedness and response. Further research is needed to identify approaches that optimally generate short-term and long-term value for communities participating in population health. Feasible, sustainable and contextualised citizen science approaches that meaningfully engage affected communities for the long-term will need to be inclusive of all populations and their cultures, comprehensive of all domains, digitally enabled and viewed as a key component to allow trust-building among the stakeholders. The impact of COVID-19 on people’s lives has created an opportune time to advance people’s agency in science, particularly in pandemic preparedness and response.

SUMMARY BOX

  • The ideal state of citizen science should see researchers, communities and policymakers collaborate, co-create and share ownership in all aspects of research, towards translating data into comprehensible and actionable outputs at the population level.

  • While data collection and mathematical models are on the rise in health decision making, there is a lack of effort to develop effective approaches to participatory modelling and community engagement in data visualisation and communication.

  • By empowering communities through shared knowledge-making and bidirectional communication, citizen science could be a bridge to build trust among communities, researchers and policymakers in a collective decision-making process.

  • Citizen science approaches enabled by digital technologies have the potential to go beyond data generation to improve transparency and accuracy of modelling, communications and collaborative policy development.

  • We need to be mindful of systemic barriers and social, economic and political inequities when implementing digitally enabled citizen science approaches, to avoid widening existing health disparities.

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