Opportunities for Engaging Patients in Kidney Research

Area of Science:

• Nephrology
• Patient-Centered Research
• Health Outcomes

Background:

• Patient engagement in research is increasingly recognized for its potential to improve study relevance and impact.
• Kidney disease research specifically can benefit from integrating patient perspectives across diverse areas like bone health, transplantation, and medication adherence.

Purpose of the Study:

• To summarize the rationale for patient engagement in kidney disease research.
• To review established and envisioned advantages and strategies for patient-researcher partnerships.
• To discuss expected benefits and opportunities for patient engagement in four distinct kidney disease research programs.

Main Methods:

• The review synthesized information from published studies on patient engagement.
• It also incorporated insights from four specific kidney disease research programs involving patient and researcher collaboration.

Main Results:

• Patient, healthcare provider, and researcher partnerships yield valuable insights for kidney disease research.
• Effective strategies and opportunities exist for engaging patients with lived experience throughout the research process.
• Envisioned advantages include aligning research with patient priorities, leveraging experiential knowledge, and improving study design and dissemination.

Conclusions:

• A relative scarcity of literature specifically on patient engagement in kidney disease research was noted.
• Future studies should focus on identifying optimal strategies for patient engagement in all research phases, from priority setting to knowledge translation.