Co-constructing methodology as a power shift dynamic: insights from a community-based research project on lung cancer treatment side effects

This article examines the co-construction of research methodology as a dynamic space for redistributing power between different forms of knowledge in a community-based study on cognitive and psychiatric side effects of targeted therapies for ALK/ROS1 fusion lung cancer. Drawing on the DRACONIS project, the paper describes how patients, family members, clinicians and social psychology researchers collaboratively redesigned the study protocol through a full-day participatory workshop. Anchored in critical health psychology and community psychology, this approach challenged traditional hierarchies between biomedical expertise and experiential knowledge. The workshop revealed a broader and more heterogeneous range of cognitive and psychiatric symptoms than initially anticipated and highlighted their substantial impact on quality of life. It also led to major methodological revisions—most notably the removal of the PET-scan initially planned in the protocol—based on ethical concerns and the lived experience of patients. The paper shows how co-construction fosters epistemic justice, strengthens interdisciplinary collaboration, and reshapes what counts as valid knowledge in oncology research. It argues that collective reflexivity, time investment, and a willingness to negotiate discomfort are key conditions for transforming research practices toward more democratic and ethically grounded methodologies.