Case study: Kidney Health Australia
In early 2018, Kidney Health Australia (KHA) developed a guideline for managing the percutaneous renal biopsy for individuals with chronic kidney disease (CKD) (Scholes-Robertson et al., 2019). KHA included 40 persons with lived experience of CKD and caregivers of persons with CKD across Australia. These individuals are hereafter called patient partners. KHA asked patient partners to prioritize which topics were most important to them during a percutaneous renal biopsy.
Patient partners value minimizing discomfort and disruption, protecting their kidneys, enabling self-management, and ensuring support for families and caregivers is available; all of which would help in alleviating anxiety and avoiding undue stress.
There were marked differences between the priorities identified by the content experts on the guideline development working group, versus what the patient partners perceived to be important to their health and wellbeing (shown below). Their voices were heard, and KHA effectively incorporated these suggestions in guideline development.
|Topics prioritized by content experts||Topics prioritized by patient partners|