The value of partnership in patient-driven as well as in researcher-driven projects

Abstract

Plain English summary Health research often uses patients as either participants or partners. Patients running the research is less common, even though the outcomes might be more important to patients than to anyone else. A medical company started the Kidney Connect project, but invited patients to drive it. The main driving role was planning and conducting data collection and analysis of data for the project. In this commentary, patient representatives describe how they led the project’s work, what went well and what did not go so well for patients. It then compares the project’s results with those from similar work that involved patients as partners but had only researchers in charge. We found that certain things can limit research that is run only by patients, but it has similar results to a project with only researchers in charge.

Keywords

• Patient and public involvement
• Patient partner
• Patient engagement
• Chronic kidney disease
• Diabetes