Active involvement of patient representatives in research: roles, tasks, and benefits in a pilot intervention study

Patient involvement in research and development has been increasingly applied and studied during the last decades. There is rising consensus that collaboration with patients or their representatives (e.g., parents, family members, partners) in co-developing new treatment interventions and participating in treatment studies is beneficial for patients, researchers, and society at large. In studying the feasibility of Tackle your Tics, an innovative treatment program for children with tic disorders, patient representatives played a unique role throughout the research process, performing multiple important tasks from start (co-designing the study, obtaining a grant, developing and leading workshops and parent meetings) to finish (interpretation of the data, providing feedback to the article, giving congress oral presentations). This commentary paper offers a brief research note providing tangible examples of the roles, tasks and benefits of patient representatives in research. Active involvement of patient representatives in the Tackle your Tics pilot study has provided improvements in the treatment program with experience-based knowledge, and improvements in the research design, matching the needs and wishes of participating families. These benefits of involving patient representatives can be relevant for future research designs.