Aims:

To learn from Aboriginal and Torres Strait Islander people about their experiences with health care for chronic and end-stage kidney disease.  

Summary:

Darwin recently hosted the 53rd Annual Scientific Meeting of the Australia and New Zealand Society of Nephrology.  The local organising committee, including Dr Paul Lawton, Dr William Majoni and Dr Jaqui Hughes promoted the opportunity for Australian and New Zealand nephrologists to learn from patients. This Inaugural Patients Voices Meeting promoted key issues for patients in Northern Australia. Eighty-two delegates participated in the meeting, and 60 per cent worked in the nephrology health care industry.  

Implications for policy and practice:
A number of areas were highlighted for improvement including:
  • Timely diagnosis of kidney disease and access to kidney supportive treatments 
  • A greater emphasis on enabling patients to live in their own homes with their own families whilst undertaking dialysis treatments.  
  • Information systems about kidney disease and how to access health care, 
  • Education, workforce and cultural safety reforms.
Our research has found: 
Patients welcomed the opportunity to participate in forums to reflect on health care. Patients also recommended urgent reforms to health services for chronic and end stage kidney disease are needed in Northern Australia, and particularly for Aboriginal and Torres Strait Islander people.
 
Chief Investigators:
Project dates:
September 2017 - ongoing
Funders:
  • Kidney Health Australia
  • Astellas Pharma
  • Novartis Australia
  1. $440 million funding boost for vital health and medical research for all stages of life

  2. Senator reveals personal story of kidney disease

  3. Sunday Territorian | Gift of life

  4. SMH | Hope and healing

  5. National review to investigate low Indigenous kidney transplant rates

  6. Feds unveil review of kidney process | NT News

  7. Indigenous Patient Voices May 2018 newsletter

  8. Indigenous Patient Voices February 2018 newsletter

  9. Indigenous Patient Voices December 2017 newsletter

  10. Fair access demanded for patients

  11. Dr Jaqui Hughes interview, National TalkBlack

  12. Kimberley patients forced to travel thousands of kilometres for essential dialysis training

  13. ABC Online | Indigenous dialysis patients pushing for grassroots community health services

  14. Indigenous voices to be heard

1.  “Country heals you." Renal patients want treatment at home.

2. Renal patients want more education.

3. Renal patients ask for respect.

4. “We want to have treatment on our own country.” - David Croker