Bridging Lived and Expert Experience: A Qualitative Study Exploring Lived‐Experience Experts' and Researchers' Experiences of Public Engagement in Cancer Research

Vollständiger Abstract

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ABSTRACT Background Public engagement has the potential to make research more impactful, and it has increased in recent years in cancer research. Yet, there is limited understanding of how this process of bringing lived experience into research works, and of what leads to tokenistic and non‐tokenistic engagement. Aims and Objectives To explore public engagement in cancer research in the United States from the perspective of both lived‐experience experts and researchers. Methods A qualitative study consisting of interviews with 15 lived‐experience experts engaged in cancer research and 15 cancer researchers. Data were analysed using reflexive thematic analysis. Results Findings are captured in four themes shared by both participant groups and mapped onto Jürgen Habermas's theory of communicative action, which helped explain the engagement process. First, public engagement was invaluable to research, but also personally and professionally. Second, underlying foundations and principles underpinned the non‐tokenistic engagement process. Third, engagement led to the creation of a partnership between cancer researchers and lived‐experience experts. Fourth, engagement was about creating and enriching culture within a research institution and in the community. Conclusions The study provided a better understanding of public engagement in cancer research. Habermas's communicative action theory offered an analytical framework to elicit the importance of mutual understanding in developing common ground between lived‐experience experts and researchers. It highlighted that tensions between lived‐experience experts and researchers, choosing not to act on feedback, and limited institutional support can lead to tokenistic engagement. Patient or Public Contribution Four Community Advisory Board members contributed to this study from design through dissemination. They co‐developed topic guides, co‐analysed data, co‐wrote this paper and are named as co‐authors.