Integrating patient partners in change – Lessons learned from Kidney Health Australia

In early 2018, Kidney Health Australia (KHA) developed a guideline for managing percutaneous renal biopsies for individuals with chronic kidney disease (Scholes-Robertson et al., 2019). KHA included 40 persons from across Australia with lived experience of chronic kidney disease and their caregivers – “patient partners”. KHA asked patient partners to prioritize which topics were most important to them during a percutaneous renal biopsy.

Patient partners valued: minimizing discomfort and disruption, protecting their kidneys, enabling self-management, and making sure that support for families and caregivers would be available. They indicated that all of this would help alleviate anxiety and avoid undue stress. Their voices were heard, and KHA effectively incorporated these suggestions in guideline development.

Notably, 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, as shown in the table below.