Expérience Patient des Parcours Mucoviscidose – ACTION :Recherche-action participative pour la mise en oeuvre d'un dispositifd'enquête sur l'expérience patient des parcours de soins, de santé et de viedes personnes atteintes de mucoviscidose

The ExPaParM-ACTION participatory action research (PAR) project follows on from theExPaParM collaborative research project. Conducted between 2020 and 2022 with academic researchers, healthcare professionals, and patient and parent co-researchers trained in qualitative research, ExPaParM resulted in the development of three questionnaires on patient experience across the cystic fibrosis care pathway, covering pediatric, adult, and transplant settings. A framework was developed to support the implementation of questionnaires in real-world settings as part of action research. This took place across four case studies involving three healthcare centers, a pediatric cystic fibrosis center (CFC), an adult CFC a thoracic transplant unit, and the Health Department of the patient organization (HDPO) Vaincre la Mucoviscidose. The research consortium for the proposal submitted to the ANR consisted of LEPS (UR3412, USPN), Ined, and the Research Department of Vaincre la Mucoviscidose, supported by an independent third monitor, the association Tous Chercheurs.The report describes the implementation of the action research phases across the fourstudy sites, the adoption of the concepts and tools by the case study teams, in collaboration with patient and parent partners, the production and interpretation of survey results from patients or parents, through to the identification of avenues for improving care pathways. Healthcare centers proved to be emblematic case studies for the system, whereas the HDPO site constituted a limit case, having failed to yield results usable by the association. Facilitating factors and challenges related to the use of the patient experience tool within the RAP framework have been identified. The report describes the evolving role of patients and parent partners at various stages of the research, through sessions on patient partnership training and the legitimization of their role, and based on observations and interviews conducted by the third monitor.The study thus concludes on the feasibility and usefulness of the patient experienceframework in pediatric, adult, and transplant care centers to identify areas to improve patient pathways. It leads to the proposal of a theory for the implementation of a patient experience framework within the cystic fibrosis care pathway, and the primary and secondary levers for achieving the goal of improving patient journeys.It is being extended through a feature-length documentary film project, aimed atsharing with the general public a sensitive portrayal of the experience of living withcystic fibrosis within the framework of participatory action research.