Moving beyond tokenism: Past, present and the future of consumer engagement in kidney disease research

Involving consumers in kidney disease research as equal partners provides enormous benefits not only to researchers to avoid research waste and increase patient recruitment/retention, but also for patients to develop a better understanding of their illness and health systems, and also to strengthen relationships with clinicians, leading to improved engagement in their care and better outcomes. The spark that began the patient revolution Involving consumers (patients, carers and family members) across all stages of kidney research has been gaining momentum among the nephrology community over the last decade. The generous support from the leadership and the Scientific Program and Awards Committee of the Australian and New Zealand Society of Nephrology (ANZSN) developed and implemented its consumer engagement framework. Since the implementation of the framework, consumers have been appointed to the Society's key advisory committees and been welcomed to all sessions of the Society's scientific and policy meetings. Whether it be the National Indigenous Kidney Transplantation Taskforce (NIKTT), established in 2019, the Aboriginal Kidney Care Together - Improving Outcomes Now (AKction) project, or the recent MRFF Indigenous Health Research Grant on Patient Navigators, all of these programs have a strong Aboriginal community reference group which works alongside an enthusiastic research team of clinicians and key decisionmakers.