Why and How We Can Co-create Environmental Epidemiology Research Projects

[By Florence Gignac, researcher at ISGlobal; Fleur Froeling, researcher at Utrecht University; and Raül Toran, outreach officer at ISGlobal]

Environmental concerns have been at the heart of various citizen science projects, including initiatives to assess the air pollution we breathe in cities, the noise we are exposed to, and the quality of the water we drink. Nevertheless, many of these projects have paid little attention to the effects of these exposures on our health.

This is one of the main conclusions of our recent review published in Environment International. In this review, we set out to promote an understanding of the role of citizen science in environmental epidemiology. The paper was prepared within the framework of CitieS-Health, a project funded by the European Commission under the Horizon 2020 programme, which seeks to place the concerns of citizens at the centre of the research agenda.

CitieS-Health seeks to place the concerns of citizens at the centre of the research agenda

Although the citizen science approach is fairly new in environmental epidemiological research, it is becoming increasingly common practice, thanks to general trends in science such as open science, open data, open access scientific journals and responsible research and innovation (RRI).

We define co-created citizen science as scientific projects led by researchers together with citizens, who contribute throughout all stages of the research process. Under this model, society is both the decision-maker and the producer of data.

We define co-created citizen science as scientific projects led by researchers together with citizens, who contribute throughout all stages of the research process

Citizens primarily become involved in scientific research through either participation, engagement, involvement or some combination of the three, as shown below.

Three main processes of citizen inclusion in environmental epidemiology, their intersections and their link with civic motivators. Venn diagram adapted from Woolley et al. (2016). Published in Frederique Froeling et al. doi.org/10.1016/j.envint.2021.106470.

Participation, which can take place either actively or passively, describes the process by which citizens become subjects in a study and primarily provide data.

Engagement is closely linked to the exchange of knowledge and communication between citizens and researchers. The more researchers communicate their plans and request the public’s cooperation, the more engaged citizens become.

The final way in which society can contribute to scientific research is through involvement. This category describes the active role of citizens in scientific governance, where they take part in defining the problem, identifying research questions, designing study protocols, collecting and analysing data, and disseminating findings.

Most environmental epidemiological studies include at least one of the aforementioned methods. We believe that a research project can be considered co-created citizen science only when all three forms of public inclusion—participation, engagement and involvement—are present.

We believe that a research project can be considered co-created citizen science only when all three forms of public inclusion—participation, engagement and involvement—are present

We believe that further effort is needed to better prepare citizens to play an active role in co-created citizen science environmental health studies, via guidelines or co-design training sessions. At the same time, we feel that more work is needed to better prepare epidemiologists for the inclusion of citizens in their studies.

Our recently published review is one of the first attempts to thoroughly differentiate what citizen science entails in environmental epidemiology.

Our recently published review is one of the first attempts to thoroughly differentiate what citizen science entails in environmental epidemiology

Although citizen science bears commonalities with other participatory approaches applied in environmental health studies, it is clear that more inclusive research practices yield a wider array of benefits for experts and citizens alike. In short, we posit that epidemiologists must move beyond the traditional research framework and embrace more outreach and inclusion activities.