Power of citizen science | explores factors that hinder or support citizen science in health and the support needs of its practitioners
GOALS OF THE PROJECT:
The starting point of the exploratory study described in this report is to identify the barriers and enabling factors for citizen science in the health domain, and to examine the support needs of citizen science practitioners.
Exploratory phase of the study “The Power of Citizen Science.” Based on a literature review, survey research, in-depth interviews, and a stakeholder workshop, knowledge has been gathered on citizen science in the health domain, with the intention of using this knowledge to strengthen citizen science in the future through a product or service.
Background & Description:
- Citizen science involves research activities in which citizens and scientists collaborate to generate knowledge that is valuable for individual citizens, for science, and for society (Wildevuur et al., 2023). In the Dutch health domain, citizen science is still relatively uncommon, but it is on the rise. Funders such as ZonMw and the Dutch Heart Foundation are promoting citizen science by organizing dedicated funding rounds. One such round, “Samen aan de hartSlag”, was launched in 2024. For this call, citizens were invited to submit their questions about cardiovascular diseases. They were then matched with scientists to jointly develop a research plan. From 165 citizen-submitted ideas, seven research teams (each including at least one citizen and one professional researcher) successfully passed the selection procedure. These seven teams are now carrying out their research projects.
- There is a wide diversity of approaches to citizen science in the health domain. Dutch patient organizations have suggested characterizing this diversity based on the driving force behind the research (citizen- and/or patient-driven versus researcher-driven) and the intended goals (general versus individual) (Transitieteam GROZ, 2019). Citizen research initiated by a patient with personal goals (also referred to as self-research) follows a very different trajectory than citizen research initiated by professional scientists pursuing broader societal goals.
- The aim of our exploratory study is to identify the barriers and enabling factors for citizen science in the health domain, and to examine the support needs of citizen science practitioners that align with these factors.
- The exploratory phase of our study is divided into a literature review, a scoping survey, in-depth interviews, and a stakeholder workshop.
CONSORTIUM:
- University of Twente (Citizen Science Hub Twente (DesignLab), CS4Health (Techmed Centre)
- Avans University of Applied Science
- Zorg Onderzoek Nederland
- Mijn Data/Onze Gezondheid
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