Collaboration and co-ownership in research: Dynamics and dialogues between patient research partners and professional researchers in a research team

摘要

Background Different strategies by which patients can be involved in research include consultation, control and collaboration. This article focuses on collaboration within research teams and considers this with reference to a research project about setting a social-scientific agenda for health research from the perspectives of patients with a chronic kidney disease (CKD). Objective To examine the dynamics and dialogues in a collaboration between patient research partners and professional researchers. Design A responsive methodology was used in the research project. Two patient research partners participated in the research team. Twenty-seven patients with CKD and parents of young children with CKD were interviewed, seven focus groups were organized and observations were held at a dialysis centre. Results During the collaboration, the research partners and professional researchers engaged in a mutual learning process in all stages of the project. The professional researchers gave the research partners a sense of ownership in the research process. The research partners could relate to the lives of patients by using their experiential knowledge. In the context of collaborative working, this helped shape an agenda for research. Conclusion and discussion The active involvement of patients as research partners can add value to a research strategy, especially when research partners and professional researchers engage in a dialogue that is open, inclusive and deliberative. Issues for discussion include the possibility of 'over-involvement', the research profile and training of research partners and whether participation of patients is restricted to certain types of research.