Université Lumière Lyon 2
Research on Healthcare Performance (RESHAPE), Inserm U1290, Université Claude Bernard Lyon 1
Thesis title : Psychosocial dynamics of engagement in participatory health research: Understanding to foster collaboration between researchers and those affected by research
Year of registration : 2023
This thesis is part of the EDELWEISS project, born from a close collaboration between the Social Psychology Department at Lyon 2 University and the collaborative platform Seintinelles. The research aims to facilitate collaboration between researchers and citizens in the field of oncology through digital tools. This initiative takes place in a context where collaboration is increasingly valued, especially by decision-makers and funders. The participatory approach appears as a response to contemporary research challenges. However, several obstacles remain, creating new issues that need further investigation.
Researchers, often insufficiently equipped to engage in these participatory processes, face resistance both due to the demands of the highly competitive research environment and individual identity-related challenges. Participatory approaches challenge traditional methods of scientific knowledge production and the role of researchers within this process. The multiplicity of these approaches generates identity tensions, where the acceptance, rejection, and definition of citizen participation in research depend on researchers' scientific affiliations and their perceptions of their role in the scientific community. On the citizens' side, existing studies mainly focus on those already involved in participatory projects, most of whom are trained and introduced to the world of research and the associative sector. However, as the role of citizens in research evolves, it tends to express itself through fundamentally diversified forms of engagement, addressing the challenge of their increasing involvement. This plurality, still largely unexplored as a whole, makes it essential to analyze the representations, motivations, and perceived barriers among the general public not yet involved in order to enhance meaningful citizen participation and promote a more inclusive health democracy.
Thus, the objectives of this thesis are to explore the psychosocial processes, particularly identity-related, representational, and motivational, that underlie the interest of both researchers and citizens in participatory research. Grounded in social psychology, this study aims to understand the individual, inter-individual, and social determinants of engagement in participatory research. The thesis adopts a mixed-methods approach, including semi-structured interviews and a quantitative survey of researchers from various disciplines, followed by focus groups with individuals involved in health-related research.
Romaine Desjardin is a PhD candidate in social psychology, following a master’s degree in the same field. Her dissertation, supervised by Marie Préau, focuses on the identity, representational, and motivational processes at play among researchers and citizens involved in participatory research.
