Citizen Science for Health: an international survey on its characteristics and enabling factors

Abstract

Even though citizen and patient engagement in health research has a long tradition, citizen science in health has only recently gained attention and recognition. However, at present, there is no clear overview of what major challenges citizen science initiatives in the health domain are facing, nor what makes citizen science in the health domain distinctive from citizen science in other domains, if at all. Such an overview could contribute to highlighting and articulating the different voices and needs of stakeholders engaged in any form of citizen science in the health domain. Besides that, it may encourage the input of citizens and patients alike in health research and innovation, policy and practice. This paper reports on a survey developed by the European Citizen Science Association (ECSA) Working Group “Citizen Science for Health”, with the overall intention to lay bare the characteristics and enabling factors of citizen science in the health domain, and to formulate a direction for future work and research. The survey was available in six languages and was open between January and August 2022. The majority of the 254 respondents were from European countries. Ethics, the complexity of the health domain, and the overlap of the role of researcher and the subject of research were the main issues specific for citizen science in health as compared to citizen science in other domains. The top two conditions that need development are Balanced return on investment and Ethics. The paper discusses these and other conditions with references to current literature.

How to co-create content moderation policies: the case of the AutSPACEs project

“…Citizen science describes a broad set of methods and practices that all center around involving non-researchers in the act of doing research (Haklay et al, 2021), including in data collection, data processing but also in the co-design of research studies (Vohland et al, 2021). While historically often used in fields such as ecology or astronomy, citizen science is increasingly used in health-related research too (Remmers et al, 2023). While content moderation questions in citizen science are mostly framed around quality and safety issues of citizen-collected data (Kapenekakis and Chorianopoulos, 2017;Schacher et al, 2023), how these online platforms are designed and governed are also actively studied (Kloppenborg et al, 2021;Morell et al, 2021).…”