Impacts of research that are meaningful to people with chronic kidney disease and their caregivers: a workshop report.

BACKGROUND

Research impacts are typically measured by academic indicators and standards. These indicators often do not capture translational or purposeful benefits to society, in particular patients and caregivers. In this workshop, we aimed to identify impacts of research that are important to people with chronic kidney disease, caregivers and health professionals.

METHODS

We held a national workshop with ten breakout groups involving patients, caregivers and health professionals from Australia and New Zealand, to discuss the importance of research impact. The transcripts were thematically analyzed.

RESULTS

In total, 81 participants including patients, caregivers (n=27) and health professionals (n=54). We identified seven themes with research impact: preventing kidney disease and kidney failure; enhancing life participation and wellbeing (reducing symptoms and complications, prioritizing mental health, minimizing the burden of treatment); fostering societal understanding; improving access to care (reducing geographical barriers, and promoting advocacy for financial support); strengthening agency in decision making; achieving treatment breakthroughs including finding a cure, and making innovative advancements in dialysis technology; and offering hope for future generations.

CONCLUSION

The impacts of research most important to patients and caregivers are those with a tangible and immediate influences on day-to-day life enabling an improved quality of life by addressing challenges, burden and hope for treatment advancements. We suggest that researchers and health professionals ensure all future research is grounded in a person-centered approach to enable impactful research.