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Herodotou, Christothea; Kenny, Ian and Scanlon, Eileen
(2024).
DOI: https://doi.org/10.1145/3677525.3678642
Abstract
The involvement of the general public or volunteers in research has evolved over time. Terms such as ‘subjects’ have been replaced by ‘participants’ and are accompanied by an aspiration to actively engage people in research. Under the banner of Community Citizen Science (CCS), we have seen the public collecting or processing data to support activities led by professional scientists, while recently, we observed a growing interest in bringing together members of communities to examine personally relevant topics and identify solutions that best match their needs. In this study, we captured the perceptions of professional scientists about participants' engagement in research activities. We interviewed 14 academics and researchers from The Open University UK who conduct primary research with human participants, including those explicitly involved in CCS and participatory research. We identified varied roles participants currently have in research, diverse perceptions about the benefits participants may experience from taking part in research, and challenges faced when certain forms of CCS are deployed. Insights from this study resulted in proposing a practical CCS framework with five functions that can enable the democratisation of research practices in the future.