Bridging the gap: empowering patients as research partners through a structured training program

Engaging patients as partners in the research process is a mutually beneficial endeavor. However, patients may need skills training in order to meaningfully contribute to a project. The present paper describes the training program "A Front Row SEAT to Research," which equipped patient partners to independently lead focus groups and interpret their associated data. The focus groups were an aim of a larger project evaluating the face validity of a scale measuring patient engagement in research.

The nine-week training program, created by Patient Engaged Research Center qualitative research experts, empowered patient partners to conduct qualitative research. The structure of the program included asynchronous video lessons, workbook exercises, and live sessions for practice. Topics covered included a comprehensive overview of the scientific process, qualitative research methods, focus group moderation, planning, coding, data interpretation, and dissemination of findings. A hands-on approach to learning, coupled with the collection of continuous feedback, were hallmarks of the program.

The training program emphasized clear expectations, accessibility, and providing resources to build the capacity of patient partners. Trust was established through a dedicated support person, a collaborative group dynamic, and regular engagement, ensuring patient partners felt valued and empowered. This approach allowed patients to meaningfully contribute to the research and develop a sense of shared ownership in the project.