Embedding Patient and Public Engagement in a Cancer Project: Protocol for a Qualitative Study

Patient and public engagement in research can enhance its quality, ensure the relevance of findings to the public, and make the process more inclusive and democratic. Ensuring meaningful engagement can be challenging and requires careful preparation.

This paper presents an approach for a public engagement process in a qualitative study, describing how lived experience experts act as coresearchers from the design of the study through to analysis and dissemination.

A community advisory board (CAB) comprising 4 lived experience experts will serve as coresearchers in the qualitative study. The CAB's role spans all stages of this qualitative research. Their engagement will consist of approximately monthly meetings focusing on different research stages as the research team progresses through the study. The meetings will be designed by PT with input from the CAB to shape the discussion focus and identify relevant training needs. The lived experience experts, alongside PT, will jointly evaluate the CAB activities through regular reflective discussions and map these onto the established public engagement evaluation framework.

Findings from the CAB evaluation will provide insights into how meaningful the process was for both lived experience experts and the research team by capturing how lived experience experts were involved, whether their voices were heard, whether their feedback led to change, and who controlled the agenda. The study received funding in 2025, and all 4 members of the CAB were recruited in July and August 2025. In September, only the first stage was underway. As this paper reports an approach to public engagement, no findings are available at this point. The CAB evaluation is expected to take place at the end of the research project in mid-2026.

The findings will offer a new understanding of how to engage lived experience experts, consequently providing guidance for other researchers to plan realistic engagement activities and genuinely include more members of the public with lived experience in qualitative research.