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 the specifics and challenges of citizen science initiatives in the health domain. Such an overview could contribute to highlighting and articulating the different needs of stakeholders engaged in any form of citizen science in the health domain. It may also 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)’s Working Group “Citizen Science for Health,” to highlight the perceived 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, and the largest stakeholder respondent group was researchers. Respondents were asked about their perspectives on the particular characteristics of citizen science performed in health and biomedical research, as well as the challenges and opportunities it affords. Ethics, the complexity of the health domain, and the overlap in roles whereby the researcher is sometimes also the subject of research, were the main issues suggested as being specific to citizen science in health. The top two areas that respondents identified as in need of development were “balanced return on investment” and “ethics.” This publication discusses these and other conditions with references to current literature.

Keywords

• citizen science
• health
• patients
• citizens
• health research