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Objectives <p>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.</p> Methods <p>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.</p> Results <p>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.</p> Conclusion <p>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.</p>

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Comment impliquer le public et les patient(e)s dans la recherche en prévention primaire: Perspectives internationales et leçons tirées du réseau de recherche en prévention primaire des cancers CANCEPT

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2025年12月29日

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  • Pauline Oustric,
  • Maria Claudia Addamiano,
  • Niamh M. Redmond,
  • Myriam Sève,
  • Rita Di Giovanni,
  • Claudia Diaz,
  • Magali Ferrer Rigaud,
  • Ana Millot,
  • Carole Laffont,
  • Myriam Dordonne,
  • Charlotte Bauquier,
  • Véronique Witkowski,
  • Chloé Moulin,
  • Pascale Journet,
  • Harriet Rumgay,
  • Melissa Gontero,
  • Béatrice Fervers,
  • Julien Biaudet

摘要

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.