Patient and public involvement and engagement in research: who, why, when and how to get it right

Patient and public involvement and engagement (PPIE) refers to the different ways those with lived experience, including patients, family, friends and carers, and the public engage with the design, delivery and dissemination of research. The aim is to ensure relevance and acceptability of studies, aligning them with the unmet needs and priorities of research participants and end-users. PPIE is now an essential part of research planning, funding acquisition, conduct and communication of findings. This article describes what PPIE is, why it is important and how it can be undertaken well and meaningfully. As a case study, we explore how PPIE has been put into practice in Open-IBD: A longitudinal multi-omic inception cohort study in inflammatory bowel disease (IBD) and examine its impact on both the research and members of the Lived Experience Advisory Panel (LEAP). This article is authored by a collaborative of LEAP members, researchers and clinicians, celebrating the central and meaningful role that PPIE played in shaping this study.