User involvement in the making: Positions and types of knowledge enacted in the interaction between service users and researchers in user panel meetings

Abstract

Background: Numerous studies of user involvement in research have been conducted. However, there is a lack of studies applying observational methods and addressing the concrete practice of involvement. Objective: To determine what knowledge types and competences users apply when involved in the research process through user panel meetings. Design: User panel meetings in a qualitative project in rehabilitation were sound-recorded and transcribed verbatim. Data analysis applied an abductive approach framed by positioning theory. Setting and participants: Six rehabilitation service users and a similar number of researchers met 20 times during a six-year project period. They discussed various issues in the research process such as interview guides, analysis and dissemination of results. Findings: The service users combined their respective knowledge and competence into six positions enacted in the panel interactions. They engaged as co-researchers, based their contributions on their respective personal histories, represented an NGO and peers, applied their respective professional and educational backgrounds and, finally, engaged as concerned citizens. Discussion and conclusion: The findings add to the discussion of professionalization of user involvement by introducing a wider array of positions enacted than do the findings of previous studies. Researchers recruiting user panel members, as well as NGOs appointing candidates for user panels, are advised to consider a wide competence profile for possible candidates. A panel is also considered as a resource in confirming and elaborating on a study's findings. Patient and public contribution: A service user panel contributed to the study.