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

• Published in: Health expectations : an international journal of public participation in health care and health policy Vol. 22; no. 3; pp. 496 - 503
• Main Authors: Stuhlfauth, Susanne, Knutsen, Ingrid Ruud, Foss, Christina
• Format: Journal Article
• Language: English
• Published: England John Wiley & Sons, Inc 01.06.2019; John Wiley and Sons Inc; Wiley
• Subjects: Adult; Analysis; Collaboration; community participation; constructivism; Cooperation; Cooperative Behavior; discourse; Ethics; Female; focus group; Focus Groups; Humans; interprofessional relation; Knowledge; Male; Medical research; Medicine, Experimental; Negotiations; Norway; Original Research Paper; Original Research Papers; Participation; Patient Advocacy; positioning theory; Power; Power, Psychological; Qualitative Research; Research Personnel; Research Subjects; Researchers; Theory; User experience; user involvement in research; Norway; research personnel; constructivism; collaboration; positioning theory; focus group; interprofessional relation; user involvement in research; community participation; discourse
• ISSN: 1369-6513; 1369-7625; 1369-7625
• DOI: 10.1111/hex.12875

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.