Since the establishment of the NIKTT in 2019, five Indigenous Reference Groups (IRGs) and a National Panel of consumers have been created. The aim of the IRGs is to bring about change within transplant units by bringing together patients, carers, and families to discuss their kidney journeys, needs, and supports through to transplant and beyond. The National Panel brings together Aboriginal and Torres Strait Islander people living with chronic kidney disease, undergoing dialysis treatment, on the active wait list for a transplant, and post-transplant. The panel also consists of family carers and Aboriginal and Torres Strait Islander health staff supporting kidney care. At a national scale, the National Panel was set up support the work of the NIKTT and the IRGs through providing the Taskforce and its members with additional feedback from local levels, maintaining connections across Country, and as a space for the NIKTT to provide updates to all regions on the work of the Taskforce and other advocates in kidney health. 

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Now, as we move forwards with a national strategy and long-term plan for improved access and outcomes for Aboriginal and Torres Strait Islander peoples with kidney disease, we are seeking community, clinical, and advocate opinions on the best way to represent our patients and people at a national level. 

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We believe that the creation of a National Peak Body for Aboriginal and Torres Strait Islander peoples living with kidney disease and transplantation is crucial.

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We believe a Peak Body should: 

• Support and advance the lives and healthcare of Aboriginal and Torres Strait Islander patients and families living with end-stage kidney disease, both pre- and post- diagnosis and transplant;

• Provide cultural oversight to kidney care as well as advice and support to projects involving Aboriginal and Torres Strait Islander peoples with kidney disease and transplantation;

• Disseminate findings from community consultations, research projects, and other initiatives that involve Aboriginal and Torres Strait Islander peoples with kidney disease and transplantation;

• Help to navigate, consult, and guide organisations and renal units on supporting and implementing findings from the Cultural Bias report as well as findings from NIKTT or similar work;

• Discuss and advocate for priorities that will inform a National Indigenous Transplantation Strategy as well as other national or local kidney-related strategies.

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The Peak Body would accomplish the overall aim of improving access to care and transplantation, as well as outcomes of care and transplantation, for Aboriginal and Torres Strait Islander peoples by performing activities such as:

• Working together with clinical and administrative staff to provide better system navigation for patients and families;

• Advocating to local, state, and national bodies for policy change; 

• Recommending service delivery and models of care that work for Aboriginal and Torres Strait Islander patients; 

• Continuously engaging with stakeholders on behalf of renal patients and their families, through consultations, workshops, conferences, and other meetings; 

• Providing support to develop and implement better educational resources for Aboriginal and Torres Strait Islander peoples living with kidney disease;

• Collecting feedback from around the country through IRGs as well as feeding back national information to IRGs;

• Co-designing and co-creating research initiatives and other feedback mechanisms to improve the evidence base around kidney care and transplantation for Aboriginal and Torres Strait Islander peoples.

 

We suggest the following governance structure: 

• Secretariat to oversee the work of the Peak Body and ensure operational efficiency, including the following positions:

  • CEO

  • Project Officers

  • Administrative Officers.

• Board consisting of nominated Aboriginal and Torres Strait Islander representatives from each state and territory that meet regularly to decide on the work of the Peak Body and deliver aims and objectives, including:​​

  • Representatives from each IRG​

  • Community representatives

  • Representatives from Aboriginal and Torres Strait Islander Community Controlled Health Organisations.

• Consultants

  • Representatives from transplantation units

  • Clinical representatives including nephrologists, nurses, transplant coordinators, Aboriginal Health Practitioners, and Liaison Officers

  • Dialysis patients, transplant patients, family, carers, community members​

  • Advocates, researchers, policy makers, students

  • Project partners

  • Representatives from key stakeholder organisations such as Kidney Health Australia, TSANZ, ANZSN, ANZDATA, local and national government, and other key health organisations.

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We are eager to understand your opinions on the formation of a National Peak Body for Aboriginal and Torres Strait Islander advocates for better kidney health outcomes. 

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Please complete the following questions or get in touch with us via niktt@anzdata.org.au. 

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Please note, you do not have to sign in to a Google account to complete the form below. Just fill out the answers and click 'submit' when finished. 

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