Nyiyaparli people are leading a new approach to kidney health and wellbeing, grounded in Country, family, culture, and community.

The Nyiyaparli Health and Wellbeing Project, initiated by Karlka Nyiyaparli Aboriginal Corporation (KNAC) and funded by the Nyiyaparli Trust, is turning community priorities into practical action across the Pilbara and Boorloo / Perth.

The project responds to the experiences of Nyiyaparli people living with kidney disease and their families, including those who travel away from Country to access dialysis and other healthcare. It began by listening to Nyiyaparli people.

Karlka Nyiyaparli Aboriginal Corporation CEO Cate Ballantyne told National Indigenous Times that "from the first community yarns through to co-design, governance and implementation, one principle has remained at its centre: Nyiyaparli people leading decisions about Nyiyaparli health".

Nyiyaparli Health and Wellbeing Project Steering Committee, established as a governance body of KNAC to provide community leadership, cultural guidance, and project oversight, is central to the project.

Its members bring a mix of knowledge and experience, including experience of kidney disease, supporting family members through illness, community leadership, and professional expertise across health, community services, and recruitment. The Committee also includes different generations and strong representation from Nyiyaparli women and men.

Building something 'bigger than a program or a building'

The Steering Committee is involved in project decision-making. Members have shaped partnership agreements, co-designed the Health and Wellbeing Centre and evaluation framework, guided kidney health education, contributed to recruitment and communications, supported decisions around the Henley Brook property, and made recommendations to the KNAC Board.

Steering Committee Chair Christina Stone told National Indigenous Times: "We are building something that is bigger than a program or a building."

"This project is about healing, dignity, connection to Country, and creating stronger systems of support around our people. That takes good governance, strong partnerships, and a shared commitment to walking together for the long term," she said.

KNAC engaged consultancy Grounded Impact to undertake a process of yarning, consultation, and co-design. Over nine months, Grounded Impact worked alongside KNAC and Nyiyaparli members to understand people's experiences of kidney health and healthcare, what was already working, where change was needed, and, importantly, what Nyiyaparli people wanted for the future.

The first phase involved speaking with 37 Nyiyaparli members, alongside healthcare and dialysis providers, kidney health experts, advocates, and potential partners. Face-to-face yarns were held in Boorloo / Perth, Karratha, Hedland, and Newman, with members also participating via phone from Carnarvon, Geraldton, and Wickham and through an online survey.

Grounded Impact then returned to community with what had been heard. Further talks in Boorloo, Marble Bar, and Hedland helped refine two key priorities: increasing dialysis provision in the Pilbara and strengthening accommodation and wraparound support for Nyiyaparli people travelling to Perth for healthcare.

Nyiyaparli members then participated in further co-design focused on what culturally safe accommodation and support should look like. They identified opportunities to strengthen access to dialysis closer to Country, prevention and early intervention, culturally safe patient support, accommodation in Perth, health education, and partnerships with Aboriginal community-controlled and specialist health organisations.

A call for six important reforms

The work resulted in six recommendations.

The first established a pathway for partnership with Wirraka Maya Health Service Aboriginal Corporation, strengthening primary healthcare, chronic disease prevention, screening, and culturally appropriate kidney care in the Pilbara.

The second established a Nyiyaparli Health and Wellbeing Liaison Officer in the Pilbara, providing a trusted connection between Nyiyaparli members, families and services and supporting prevention, screening, early intervention, and access to care.

The third established a partnership with Kidney Health Australia, bringing specialist kidney health expertise to service gap analysis, education, prevention, and referral pathways.

The fourth is the development of a Nyiyaparli Health and Wellbeing Centre in Perth, in partnership with the Foundation for Indigenous Sustainable Health (FISH). The Centre will provide culturally safe accommodation and wraparound support for Nyiyaparli people travelling to Perth for dialysis and other medical treatment and has continued to be shaped through Nyiyaparli co-design.

The fifth established a partnership with Purple House, drawing on its experience in culturally safe dialysis support to provide individualised navigation, advocacy and practical support for Nyiyaparli kidney patients in Perth.

The sixth established the governance, partnership management and evaluation structures needed to keep Nyiyaparli leadership at the centre of the project as it grows.

Ms Ballantyne said that together, the recommendations aim to "connect prevention and treatment with Country, culture, family, culturally safe care, and the systems of support surrounding Nyiyaparli people".

Nyiyaparli people are 'leading and shaping stronger systems of health and wellbeing'

The Nyiyaparli Health and Wellbeing Project is taking Nyiyaparli knowledge and priorities into the wider health system.

In September 2025, Steering Committee member Shikiara Stone co-presented the project at the Australian and New Zealand Society of Nephrology conference.

KNAC and the Steering Committee have also advocated directly with the WA health system, including correspondence with the Director General of the WA Department of Health, with a response since received. A paper drawing on Nyiyaparli experiences of kidney healthcare has also been submitted to the Medical Journal of Australia.

These activities, Ms Ballantyne noted, "build on the same foundation as the project itself: Nyiyaparli people identifying what matters, shaping the response and leading the way forward".

"From the first community yarns through to partnerships, services, advocacy, and research, the project remains grounded in a simple principle: Nyiyaparli people leading and shaping stronger systems of health and wellbeing for Nyiyaparli people."