Coming from two different worlds—A qualitative, exploratory study of the collaboration between patient representatives and researchers

Abstract

Background: Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers’ and users’ perspective. Objective: By bringing together researchers and patient representatives, this study explores and describes both parties’ experiences with user involvement in research as they appear through interactions in a focus group. Design: We apply a qualitative design using positioning theory as a theoretical framework. Setting and participants: Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis. Findings: The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs. Discussion and conclusion: Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research.