Patients guiding latest kidney transplant research

Patient Navigators – Aboriginal and Torres Strait Islander people with lived experience of kidney disease and transplantation – will be at the centre of an innovative new project to be funded by a $1m grant from the Medical Research Future Fund.

The project brings the Patient Navigators together to identify gaps in the current system and apply community-driven solutions. The Navigators will work with researchers to help new and existing kidney patients travel the complex and often confusing kidney health pathway, with the aim of increasing the number of eligible people on the transplant waiting list.

Kaurna, Narungga, and Ngarrindjeri woman Kelli Owen, herself a kidney transplant recipient, will lead the team of collaborative researchers that includes the Patient Navigators themselves, other Aboriginal academics, and a non-Indigenous clinical support network of kidney doctors, nurses, and health professionals. She says embedding lived experience within the project allows it to be governed and ‘done right’ from the outset.

“Having the Patient Navigators on the research team was an absolute must,” she said.

“We need their voices in every meeting to ensure we’re designing models of care that work. We need their voices to ensure things are done the right way for our mob. Ensuring that patients and their families are not alone and have culturally safe pathways is our goal.”

Chronic kidney disease is a growing health problem. Aboriginal and Torres Strait Islander people with kidney failure are much more likely to be diagnosed at younger ages and spend more time on facility-based haemodialysis, meaning they are away from Country and family supports for significantly more time.

In 2021, just 15% of Aboriginal and Torres Strait Islander people with end-stage kidney disease had received a kidney transplant – the preferred treatment option. This is compared to over 50% of non-Indigenous people with kidney disease having received a transplant.

The Co-Designing a Coordinated, Sustainable, and Supportive Patient Navigator Program to Improve Kidney Health Outcomes project is run through SAHMRI as part of the ongoing work of the National Indigenous Kidney Transplantation Taskforce. It will be based in Adelaide, Port Augusta, Alice Springs and Darwin over two years.

This pioneering research will identify the strengths and enablers that allow Navigators to improve the treatment journey of Aboriginal and Torres Strait Islander people with kidney failure. The decolonising of the research process, with the core engagement of patients, Navigators, and Aboriginal co-investigators, offers a blueprint for future funding and progress.