Patient and public involvement and engagement in Long COVID research: embedding inclusion in research

Patient and public involvement and engagement (PPIE) is increasingly recognised as essential to ensuring that research is safe, inclusive and equitable, yet implementation often remains tokenistic or absent. In the ERASE-LC Trial, patients contribute as collaborators throughout the research process, helping to shape research questions, study design and delivery through their lived experience.

This paper provides examples that illustrate how lived experience can be integrated across the research lifecycle, from defining roles and responsibilities to enabling meaningful collaboration. Embedding PPIE within Long COVID research has informed approaches to engagement, accessibility, and participant safety. Although developed in the context of Long COVID, these approaches may be applicable to research in other chronic conditions and wider clinical research settings.

Drawing on reflections from our PPIE network and a case study from the Long COVID study, the ERASE-LC trial, we illustrate how inclusive and community-representative PPIE can be embedded in practice. These experiences highlight the value of flexible and accessible engagement approaches to inform co-produced recommendations for strengthening PPIE in health research.

ClinicalTrials.gov, NCT05911906, 20/06/2023.