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.

Users' and researchers' construction of equity in research collaboration

“…The vagueness of the concept of equity also became clear to us during a previous qualitative study, when we interviewed researchers and users on their experiences of participation in research projects . Our experiences from this focus group study were that the understandings of values related to user participation appeared to be continuously shifting, shaped and re‐shaped as a result of the on‐going processes.…”

“…This study springs from experiences from focus group interviews in an earlier study . We invited the same groups back through a written letter, stating that the aim was to increase our understanding of equity.…”

“…Health service literature indicates that users and researchers both describe equity as vital without elaborating on what it means to be equal partners in the context of user involvement in research . Equity has been described as a ‘blurred concept’ and Gradinger et al stressed the need to further explore values such as equity.…”

“…Limited time, lack of funding, mismatched expectations, negative attitudes and differences in status are described as negatively influencing an ‘equal collaboration’. While some studies underline the need to share power, others pay attention to the ways power is played out by using different theoretical approaches . Different studies aiming to explore power in research collaboration tend to draw the conclusion that power hierarchies still exist …”

“…While some studies underline the need to share power, others pay attention to the ways power is played out by using different theoretical approaches . Different studies aiming to explore power in research collaboration tend to draw the conclusion that power hierarchies still exist …”