Oustric P, Addamiano MC, Redmond NM, Sève M, Di Giovanni R, Diaz C, Rigaud MF, Millot A, Laffont C, Dordonne M, Bauquier C, Witkowski V, Moulin C, Journet P, Rumgay H, Gontero M, Fervers B, Biaudet J
Can J Public Health . 2026 Mar;117(Suppl 1):59-74
PMID: 41460462
ABSTRACT
Objectives: This article explores the methods and benefits of involving patients and the public in primary prevention (PP) cancer research. Through the experience of the CANCEPT PP research network, it aims to clarify practices and propose methodological guidelines for developing interventions tailored to the needs of populations.
Methods: The Methodological Exchange Group GEM MIXTE, made up of 9 researchers and 9 co-researchers, met monthly (2023-2024, France) in order to define public and patient involvement in PP, take stock of participatory practices among CANCEPT members via a questionnaire (14 researchers, 8 institutions, 22 projects), and develop methodological guidelines in the form of a mind map. The participatory approaches were evaluated using the Public and Patient Engagement Evaluation Tool (PPEET) questionnaire.
Results: GEM MIXTE has enabled us to clarify the methodology of participatory research in PP and to propose practical guidelines. This work highlights the importance of diversifying the profiles of the co-researchers to enhance the relevance of interventions, while emphasizing the role of the group coordinator in structuring and facilitating exchanges. The PPEET evaluation confirmed that the co-researchers were committed to the objectives, although socio-cultural diversity remains a challenge.
Conclusion: This work proposes a methodological framework for integrating lived experience into research. The guidelines developed provide tools to inspire other networks to structure their approaches effectively, thereby strengthening citizen participation in public health.
