What are important ways of sharing power in health research priority setting? Perspectives from people with lived experience and members of the public

Community engagement (patient and public involvement) is gaining prominence in health research worldwide. But there remains limited ethical guidance on how to share power with communities in health research priority setting, particularly that which has been informed by the perspectives of those being engaged. This article provides initial evidence about what they think are important ways to share power when setting health research projects’ topics and questions. Twenty-two people with lived experience, engagement practitioners, and members of the public who have been engaged in health research in the United Kingdom and Australia were interviewed. Thematic analysis identified 15 key ways to share power, many of which are relational. This study further demonstrates that tensions exist between certain ways of sharing power in health research priority setting. More research is needed to determine how to navigate those tensions.