Involvement of patients with chronic kidney disease in research: A case study

BACKGROUND: Knowledge about best practices of patient involvement in research among patients with chronic kidney disease is sparse, with little information about barriers to and facilitators of this process. The purpose of this study is to evaluate the process and outcomes of patient involvement in a particular chronic kidney disease research project.

OBJECTIVES: To describe how patients with chronic kidney disease were involved in the research; to explain what occurred when patients with chronic kidney disease were involved; to identify facilitators of and barriers to patient involvement in research.

PARTICIPANTS: Two patients with chronic kidney disease who have both been involved in a previous research project.

MEASUREMENTS: A retrospective embedded case study of patient involvement in research with the shared decision-making and dialysis choice project inspired by Yin (2012, Case Study Methods), using document analysis and semistructured individual interviews. Data were analysed with specific research questions in mind.

RESULTS: Two patients participated in four research meetings covering all substudies of a research project and all six phases of the research process. Eight facilitators and barriers were identified.

CONCLUSIONS: Patients with chronic kidney disease were involved in all the six phases of the research process but were more highly involved in some phases than others. Important facilitators of patient involvement in chronic kidney disease research include working as a team, being a part of the process, and being prepared for the work. Important barriers to patient involvement include patient vulnerability and uremic symptoms, both of which must be taken into account.