Chronic kidney disease (CKD) affects many Australians, however Aboriginal and Torres Strait Islander people living in remote areas suffer the heaviest burden of all Australians. Aboriginal and Torres Strait Islander people tend to be affected at a younger age, are more likely to present late for dialysis, are less likely to receive a transplant and, in comparison to non-Indigenous people, will die younger.
People with CKD suffer poor health outcomes and reduced quality of life but for people living in remote communities, where there are limited dialysis services, the impact on families and communities is devastating.
From past research we know that kidney disease is strongly linked to other chronic diseases such as diabetes and heart disease. To tackle and lessen the burden of chronic kidney disease in Aboriginal and Torres Strait Islander people we need to understand the factors that predict progression, including the acceptability of different models of care.
Our research focus:
- To discover the best ways to diagnose, treat and prevent chronic disease such as diabetes, heart and kidney disease.
- To identify ways to improve systems and processes to support patients with kidney disease across the care continuum.
- To translate research findings into policy and practice.
Our research impact:
- In 2016 our research identified the most efficient, cost-effective and acceptable aspects of CKD management programs for Aboriginal and Torres Strait Islander people.
- Our findings demonstrated that opportunities existed to design systems to support primary health services with timely, targeted and evidence-based specialist care in the identification and management of people with kidney disease.
- In partnership with the government and non-government health services we have designed and built an integrated clinical decision support tool for early CKD identification and management, to consolidate patient records from multiple source systems and close the information gap between service providers.
- Our research has highlighted the need to include the patient perspective in health care design and delivery. We have worked closely with patient groups, consumers and Aboriginal and Torres Strait Islander co-researchers in a variety of ways to develop sustainable mechanisms for the inclusion of the patient voice in service delivery. From facilitating the development of patient-led cultural awareness programs, to advocating for greater Indigenous knowledge of, and authority over, their data, to understanding ‘what makes a good life and a good life on dialysis’ for Indigenous people.
- With our partners across government and non-government sectors we are working together to determine the most cost-effective dialysis models of care. This work will synthesise the data and information from multiple sources and will include perspectives of efficiency, effectiveness and acceptability – the number, money and people stories.
- Ampilatwatja Health Care Aboriginal Corporation
- Central Australian Aboriginal Congress
- Central Australian Renal Voice
- Department of Corporate and Digital Development
- Fiona Stanley Hospital
- Katherine West Health Board
- Kidney Health Australia
- Laynhapuy Homelands Aboriginal Corporation Health
- Mala’la Health Service Aboriginal Corporation
- Melbourne Health
- Miwatj Health Aboriginal Corporation
- National Health and Medical Research Council
- Northern Territory Primary Health Network
- NT Department of Health
- NT Department of Housing
- Purple House
- Renal Advocacy Advisory Committee
- Royal Adelaide Hospital
- Transplant Society of Australia and New Zealand
- Western Health
- Wurli Wurlijang Health Service
- University of Tasmania
- Professor Alan Cass AO
- Dr Gillian Gorham
- Dr Radwan Rahman Talukder
- Patrick Coffey
- Dr Bhavya Balasubramanya
- Yomei Jones
- Elizabeth (Libby) Hoppo (RN)
- Stephanie Long
- Carl Nixon
- Territory Kidney Care: A care clinical decision support system to facilitate integrated care for people with chronic kidney disease in the Northern Territory
- Territory Integrated Care: Primary health data Linkage Using Software (TIC PLUS)
- The CKD Consortium: Evaluation of chronic kidney disease identification and management in primary care in three jurisdictions across Australia
- Evaluation of impact of Territory Kidney Care (TKC) systems on chronic kidney disease (CKD) identification and management in Northern Territory (NT)
- INFERR Study: Intravenous Iron Polymaltose For Indigenous Patients with High Ferritin Levels on Haemodialysis; A Prospective, Open-Label, Blinded Endpoint, Randomised Controlled Trial
- Return to Country: A national platform study to return Indigenous renal patients home
- Dialysis Models of Care: A partnership project to examine the costs and outcomes of different dialysis models and proximity to home
- 'Making Sense and Informing Action': Renal Research Knowledge Translation and Exchange with Aboriginal People, Policy Makers and Service Providers
- PK Study: Comparison of immunosuppressant drug pharmacokinetics in Aboriginal and non-Aboriginal Australian kidney transplant recipients
- North to South: The care and outcomes of people with end-stage kidney diseases in South Australia and the Northern Territory, 2001-2018
- Medication monitoring in NT Indigenous kidney transplant recipients
- Chronic kidney disease, diabetes mellitus and water quality in remote NT communities
- eGFR study: accurate assessment of renal function and progression of chronic kidney disease in Indigenous Australians
Recently completed projects:
- Acute Kidney Injury Retrospective Study
- Catching Some Air-Asserting Indigenous Information Rights in Renal Disease
- Central Australian Renal Study Technical Report Update
- Closing the loop on life-threatening melioidosis infections: observational research informing clinical practice change and policy for adults with severe kidney disease
- Developing a patient-led component of cultural awareness training for renal services in Alice Springs.
- Distance and the impact on electrolyte results in the NT
- Evaluation of CKD management in select NT Aboriginal community controlled health organisations
- Evaluation of Renal Case Management Program
- Evaluation of Top End Health Services Renal Outreach Program
- Final evaluation of Top End Outreach Ophthalmology Resource Project
- Forensic approach for reservoir identification for serious S. aureus infections in Top End dialysis clients (STARRS)
- Fred Hollows Foundation Remote Service Delivery Evaluation
- Improving Indigenous Kidney Transplant Outcomes
- Indigenous Patient Voices
- Socioeconomic outcomes and ESKD
- Systematic review of chronic kidney disease programs
- Urine ACR ratio and the impact of contaminants
- Ritte, R., Lawton, P., Hughes, J., Barzi, F., Brown, A., Mills, P., Hoy, W., O'Dea, K., Cass, A., & Maple-Brown, L. (2020). Chronic Kidney Disease and Socio-economic Status: a cross sectional study. Ethnicity and Health, 25(1): 93-109.
- Hughes, J., Majoni, S., Barzi, F., Harris, T., Signal, S., Lowah, G., Kapojos, J., Abeyaratne, A., Sundaram, M., Goldrick, P., Jones, S., McFarlane, R., Campbell, L., Stephens, D. & Cass, A. (2019). Incident haemodialysis and outcomes in the Top End of Australia. Australian Health Review, -. doi: 10.1071/AH18230.
- Gorham, G., Howard, K., Zhao, Y., Ahmed, A.M.S., Lawton, P.D., Sajiv, C., Majoni, S.W., Wood, P., Conlon, T., Signal, S., Robinson, S.L., Brown, S. & Cass, A. (2019). Cost of dialysis therapies in rural and remote Australia - a micro-costing analysis. BMC Nephrol, 20(231), 3-11. doi: 10.1186/s12882-019-1421-z
- Gorham, G., Majoni, S.W., Lawton, P., Brown, S., Dube, B., Conlon, T., Cherian, S., Wood, P., Signal, S. & Cass, A. (2018). Interesting times - evolution of dialysis in Australia's Northern Territory (1980-2014). Renal Society of Australasia Journal,14(3),108-16.
- Li, L., Guthridge, S., Li, S., Zhao, Y., Lawton, P., & Cass, A. (2018). Estimating the total prevalence and incidence of end-stage kidney disease among Aboriginal and non-Aboriginal populations in the Northern Territory of Australia, using multiple data sources. BMC Nephrology, 19:15. doi: 10.1186/s12882-017-0791-3.
- Hughes, J., Dembski, L., Kerrigan, V., Majoni, S., Lawton, P., & Cass, A. (2018). Indigenous Patient Voices: Gathering Perspectives Finding Solutions for chronic and end stage kidney disease, 2017 Symposium Report. Darwin Northern Territory. Nephrology, 23(S1): 5-13.
- Gorham, G., Howard, K., Togni, S., Lawton, P., Hughes, J., Majoni, S.W., Brown, S. Barnes, S. & Cass, A. (2017). Economic and quality of care evaluation of dialysis service models in remote Australia: protocol for a mixed methods study. BMC Health Serv Res, 17, 320. doi: 10.1186/s12913-017-2273-5.
- Devitt, J., Anderson, K., Cunningham, J., Preece, C., Snelling, P. & Cass, A. (2017). Difficult conversations: Australian Indigenous patients' views on kidney transplantation. BMC Nephrol, 18(1), 310. doi: 10.1186/s12882-017-0726-z.
- Maple-Brown, L.J., Hughes, J.T., Ritte, R., Barzi, F., Hoy, W.E., Lawton, P.D., Jones, G.R.D., Death, E., Simmonds, A., Sinha, A.K., Cherian, S., Thomas, M.A.B., McDermott, R., Brown, A.D.H., O'Dea, K., Jerums, G., Cass, A & MacIsaac, R.J.. (2016). Progression of kidney disease in Indigenous Australians: The eGFR follow-up study. Clinical Journal of American Society of Nephrology, 11(6), 993-1004. doi: 10.2215/CJN.09770915.
- Hughes, J.T., Maple-Brown, L.J., Thomas, M., Lawton, P.D., Sinha, A. Cass, A., Barzi, F., Jones, G.R.D., Jerums, G., MacIsaac, R.J., O'Dea, K. & Hoy, W.E. (2016). Cross-sectional associations of albuminuria among Aboriginal and Torres Strait Islander adults: the eGFR Study. Nephrology, 23, 37-45. doi: 10.1111/nep.12956.
Click here to view more kidney publications in PubMed.
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Community Benefit Award in partnership with DXC Technology - Menzies Territory Kidney Care
Researcher Gillian Gorham was inspired to study the costs of remote dialysis after witnessing the change in a Groote Eylandt community when a respected elder returned home.
In the NT, escalating rates of severe or end-stage kidney disease are devastating Aboriginal communities. Almost 1000 Aboriginal Territorians now require life-preserving dialysis three times per week.
Report on Menzies NHMRC and MRFF Investigator grants.
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For many years, experts at Menzies School of Health Research have contributed to the development and revision of national guidelines for health service delivery. The COVID-19 pandemic poses multiple challenges to how we deliver critical health services...
The Government has launched the National Strategic Action Plan for Kidney Disease and awarded $3.5 million in funding to organisations to take immediate action.
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Researchers from the University of Adelaide, Royal Adelaide Hospital, Menzies School of Health Research and Australia and New Zealand Dialysis and Transplant Registry found the disparity had barely changed over time.
One of the members of the panel will be Dr Jaqui Hughes, Australia’s only Aboriginal and Torres Strait Islander nephrologist, based at the Royal Darwin Hospital and at the Menzies School of Health Research, who said the news of the inquiry was “really welcome”.
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Menzies School of Health Research is hosting the first consultation to establish patient and community led national guidelines to be added to the overall management plans for people affected by kidney health issues.
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Their concerns and solutions are documented in a new report by the Menzies School of Health Research in Darwin: Indigenous Patient Voices: gathering perspectives, finding solutions for chronic and end stage kidney disease.
Menzies School of Health Research senior fellow and Dr G Yunupingu’s doctor Paul Lawton said while a non-indigenous kidney patient living in Darwin was as or more likely to receive a transplant as someone living in Sydney or Melbourne, that was not the case for Aboriginal people.
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Patients and their support networks have called for equal health care closer to their homes in a new report released by the Menzies School of Health Research in the Northern Territory.
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Kidney specialist, Dr Jaqui Hughes talks to National TalkBlack
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The winner of a prestigious Kidney Health Australia Clinical Science Award says kidney specialists need to better understand Aboriginal and Torres Strait Islander views on kidney transplant and how they wish to deal with kidney disease in communities.
NT NEWS reports Professor Alan Cass, wins the prestigious Kidney Health Australia Clinical Science Award.
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Indigenous people with end-stage kidney disease from across northern and central Australia will be sharing their stories at an upcoming kidney conference in the hope of effecting change.
Transplantation Journal | Organ Transplantation in Australia: Inequities in Access and Outcome for Indigenous Australians.
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Powerful predictor for the progression of kidney disease in Aboriginal and Torres Strait Islander populations
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EARLY education is the best way to bring down the NT's sky-high rate of kidney disease, according to Kidney Health Australia medical adviser Alan Cass.
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It's been more than two decades since Maria Morgan gave her son Ronald the best gift she could, one of her own kidneys, which enabled him to live independently for 23 years.
At age five, Ronno Morgan was a young Aboriginal boy from the Kimberly suffering from kidney failure and requiring emergency surgery
World first research shows shocking numbers of preventable deaths from gaps in kidney failure treatment
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Redoubling efforts to prevent Indigenous Australians developing end-stage kidney disease is crucial given the social and practical difficulties of delivering complex care such as dialysis and transplantation in remote Australia, Dr Paul Lawton has warned.
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