Citizen Science in Pandemic Preparedness and Response
Citizen Science in Pandemic Preparedness and Response
Do you know you can play a role in your community's effort in strengthening preparedness against pandemics? Governments and authorities are not the only stakeholders responsible for ensuring Pandemic Preparedness in the region. Your role in pandemic preparedness proves far more important than it may seem.
Fast Read
Fast Read
Citizen Science defines a scientific principle where projects are conducted with community participation and needs in mind.
Citizen Science serves as an avenue for community involvement in data collection, analysis, interpretation, and communication regarding preparedness and response to an infectious disease threat.
Humanitarian organisations can benefit greatly from championing Citizen Science initiatives due to their unique position between communities and authorities.
Introduction
When the COVID-19 pandemic struck the world, nations were caught off guard due to the lack of data on the transmissibility and severity of the virus. This led to frameworks for surveillance, pathways of research, development of treatment methods, and drafting of health measures being implemented in response to the increasing threat of the virus. These actions were largely led by national governments and scientific communities. However, there remains significant untapped potential in fully engaging one of the greatest assets in pandemic response – our communities. Rather than being empowered as active partners in curbing the spread of the pandemic, communities were often seen as recipients of directives, which framed response strategies to appear more regulatory than collaborative or inclusive.
In the wake of the pandemic, the lesson learnt after repeated waves of different strains of the COVID-19 virus is that preparedness and response towards infectious disease threats have to be rapid, adaptable, and catered. As an entity by itself, the output and interpretation of data by scientists in understanding an entirely novel and evolving pathogen is a tall and arduous task. Similarly, authorities that receive a lack of community input can only implement health measures they deem appropriate for the community's needs and concerns. This begs the question of how the community can be roped in to respond and even prepare beforehand in the face of a new infectious disease threat, and support their government and respective scientific community.
This is where Citizen Science is introduced as a method to invite public involvement in hastening scientific research, inform data interpretation and policy making, and communication of said data and policies.
Source | IFRC, Community-based surveillance Assessment tool, 2019
What is Citizen Science (CS)?
Originally reserved for observation and data collection, CS describes research projects conducted with the participation of the general public for their needs and interests. These CS initiatives have been categorised by Shirk et al (2012) based on their degree of involvement.
From the lowest to highest involvement
Contractual - Communities propose areas in which scientists can conduct and report investigations
Contributory - Communities provide data for scientific research designed by scientists
Collaborative - Communities are involved in the data collection, analysis, and/or dissemination of findings of research designed by scientists
Co-created - Design of the research process involves both the community and the scientist, with participants actively engaged in all aspects of the research
Collegial - Non-professional individuals conduct independent research with validation by experts
With the advent of technology, Contractual and Contributory degrees of participation have become easily accessible. However, higher levels of participation require comprehensive project design in which compromises in outcome do not get ruled over. This can be seen in prioritisation of actionable data at the expense of downplaying of community inputs, or communication of informed measures facilitates top-down implementation over public education. Careful consideration of all stakeholders' interests from past projects can shed light on how projects can be executed.
Examples of different degrees of CS
1) Patient‑Led Research Collaborative (PLRC) as a Co-created degree of CS
A large subset of individuals experienced prolonged symptoms of COVID-19. Among those individuals, several co-founded the PLRC alongside many members of the general public. They range from a wide variety of professions but came together to define research questions, conduct large surveys, and analyse data. In their many partnerships with academic institutions, they held ownership of the research design and its narrative, as it is influenced by members who are directly benefiting from their studies. This exemplifies the co-created degree of CS that had an impact on the scientific community, where lived experiences of the general public provided an avenue to a rapid health crisis response.
Read more about PLRC here.
2) Community-Based Surveillance (CBS) as Collaborative degree of CS
Ground-up initiatives from National Societies like Palang Merah Indonesia can also be classified as CS. They piloted an integrated reporting and alert system that focuses on the detection of infectious disease and unusual health issues - Satu SBM. This allows members of the community to inform a trained community volunteer about a health issue, which will be raised and verified by a supervisor and any relevant health official. Upon verified health alert, measures and appropriate actions would be disseminated to the volunteer and indicated on the alert dashboard. Having a stake in the data acquired as well as the communication to their respective communities indicates collaboration and deep trust fostered by this initiative.
Read more about PMI CBS here.
Advocacy for Humanitarian CS
Having seen CS both in research and humanitarian settings, the uptake of CS within humanitarian organisations holds great potential. This is because humanitarian organisations often operate at the interface of communities and governmental or international bodies, giving them both the access and trust needed to facilitate multiple degrees of CS. To fully harness the potential of CS in humanitarian contexts, a concerted advocacy effort is essential. This is because CS in these settings comes with inherent challenges that need to be addressed. Among them are community engagement, management, and training (Cerrato and Balli, 2024). By promoting the value of community-led data collection and analysis as an avenue of empowerment for these communities, the development of ownership and purpose in these activities can be fostered. Management of the project within communities, especially those with a wider scope and reach, must be comprehensive to meet the designed outcomes. Most importantly, the need for tailored training, resources, and oversight to sufficiently equip the community over an extended period of the project proves to be the biggest challenge, as it would affect both the initial data acquired and downstream analysis and actions. By identifying these challenges, humanitarian organisations can adopt a holistic approach when carrying out these initiatives.
Conclusion
Incorporating citizen science into pandemic preparedness allows for more inclusive, responsive, and trusted public health actions. As demonstrated in both research and humanitarian contexts, communities are not just passive recipients of aid but valuable contributors to surveillance, data interpretation, and communication. To move forward, scientific institutions, and more so humanitarian institutions, must invest in co-creating solutions with the public. In doing so, this will not only strengthen resilience in future health crises but also ensure that no community is left unheard or unprepared.
References
Cerrato S, Balli E. Step Change – Challenges and Opportunities in Citizen Science – Citizen Science Navigator [Internet]. 2024. Available from: https://cs-navigator.stepchangeproject.eu/resource/step-change-challenges-and-opportunities-in-citizen-science/
International Federation of Red Cross and Red Crescent Societies. Community-based surveillance Assessment tool [Internet]. International Federation of Red Cross and Red Crescent Societies. 2019 Nov. Available from: https://www.ifrc.org/sites/default/files/IFRC_CBS_Assessment_EN_2019_Web-1.pdf
International Federation of Red Cross and Red Crescent Societies. Community-Based Surveillance: guiding principles [Internet]. International Federation of Red Cross and Red Crescent Societies. 2017 Mar. Available from: https://www.ifrc.org/sites/default/files/CommunityBasedSurveillance_Global-LR.pdf
Shirk JL, Ballard HL, Wilderman CC, Phillips T, Wiggins A, Jordan R, et al. Public Participation in Scientific Research: a Framework for Deliberate Design. Ecology and Society [Internet]. 2012 Jan 1;17(2). Available from: https://doi.org/10.5751/es-04705-170229
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