IARC 60th Anniversary - 19-21 May 2026
Session : 20/05/26 - Posters
Methodological co-construction and research governance : lessons learned from a community-based research
CHANIAL C. 1, FADHLAOUI M. 2, DESESTRET V. 1, NICOT P. 1, BECKER G. 3,4, PAILHE M. 5, ALLIAUME S. 5, SEROR S. 5, PAUCHET E. 5, PAUCHET J. 5, PICHAT F. 5, BOGDANI R. 5, MONTAGNY V. 5, DURUISSEAUX M. 6, PANNARD M. 2
1 Neurocognition and Neuro-ophthalmology department, Clinical and Research Memory Center of Lyon, Hospices Civils de Lyon, University of Lyon, Lyon 1 Lyon, BRON, France; 2 INSERM Unit 1290 RESHAPE, University Lyon 2, BRON, France; 3 Univ. Claude Bernard Lyon 1, Lyon Neuroscience Research Center, CNRS UMR5292, INSERM U1028, BRON, France; 4 Neurodegenerative and Neurodevelopmental Disorders Unit, Agence nationale de sécurité sanitaire de l'alimentation de l'environnement et du travail – ANSES, University of Lyon, LYON, France; 5 ALK/ROS1 Lung Cancer France Association, SAINT CYR AU MONT D'OR, France; 6 Department of Pulmonology and Early-Phase Clinical Trials (EPSiLYON East), Louis Pradel Hospital, Lyon Civil Hospitals Cancer Institute (IC-HCL), Lyon Cancer Research Center, OncoPharmacology Team, Claude Bernard University Lyon 1, LYON, France
ABSTRACT
Background
Anchored in community-based oncology research, the co-construction of research methodology challenges traditional research approaches. Beyond a methodological innovation, this approach responds to growing calls for more inclusive, ethical, and socially responsive health research. This alternative framework defines a space for redistributing power between different forms of knowledge within a community-based study on the cognitive and psychiatric side effects of targeted therapies for ALK/ROS1 fusion lung cancer.
Objectives
Drawing on the DRACONIS project (Description of the neuRocognitive and psychiAtriC disOrders associated with targeted therapies used in the treatmeNt of lung cancers with ALK/ROS1 fusion and their Impact on patientS' quality of life), this presentation aims to describe how patients, relatives, clinicians and social health psychology researchers collaboratively redesigned the study protocol through a one-day workshop.
Methods
The workshop was conceived as a deliberative space to align research objectives and methods with patients’ priorities and real-world constraints. We describe the one-day workshop and show how interactions among stakeholders led to major methodological revisions grounded in ethical concerns and patients’ lived experiences.
Results
Most notably, the process led to the removal of the blood test and PET-scan initially planned in the protocol. Participants’ accounts also revealed a broader and more heterogeneous range of cognitive and psychiatric symptoms than anticipated, highlighting their impact on quality of life. These findings underscore the limitations of protocols designed solely around biomedical indicators and emphasize the need to integrate experiential knowledge into research design. This process made it possible to rethink and supplement the methodological framework initially developed by the healthcare professionals involved in the project, particularly regarding the choice of data collection tools.
Conclusions/Implications
At a policy level, this case illustrates how community-based methodological co-construction can improve the relevance, acceptability, and ethical robustness of oncology research, while fostering epistemic justice and interdisciplinary collaboration. Overall, this approach contributed to reshaping what counts as valid knowledge in oncology research and offers transferable insights for institutions seeking to strengthen patient involvement in health research governance.
Keywords: Community-based research; Patient and public involvement; Methodological co-construction; Epistemic justice; Research governance