JMIR Publications

ABSTRACT

Background:

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.

Objective:

This paper presents a protocol for a public engagement process in a qualitative study exploring the experiences of cancer researchers (n = 15) and lived experience experts (n=15) who have been engaged in cancer research.

Methods:

A Community Advisory Board (CAB), comprising four lived experience experts, serve as co-researchers in the qualitative study. The CAB's role spans all stages of this qualitative research, from design through analysis and dissemination. Their engagement will consist of approximately monthly meetings focusing on different research stages as the research team progresses the study. The meetings will be designed by the researcher, with input from the CAB, to shape the discussion focus and identify relevant training needs. The lived experience experts, alongside the researcher, will jointly evaluate the CAB activities through regular reflective discussions and map these onto the established public engagement evaluation framework to capture how lived experience experts were involved, whether their voices were heard, if their feedback led to change, and who controlled the agenda.

Results:

This project is a part of qualitative research and focuses on the public engagement element. Evaluation of public engagement elements will indicate what works well and areas for improvement for public engagement in qualitative research.

Conclusions:

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.