Long, Stephanie

Ross, Cheryl

Koops, Joan

Coulthard, Katherine

Nelson, Jane

Shapkota, Archana Khadka

Hewett, Leiana

Tate-Baker, Jaclyn

Graham, Jessica

Mukula, Rose

Tetteh, Cynthia

Hoppo, Libby

Sajiv, Cherian

Pawar, Basant

Chmielewski, Heidi

Gold, Lorna Murakami

Rathnayake, Geetha

Heron, Bianca

Brewster-O'Brien, Teana

Karepalli, Vijay

Maple-Brown, Louise

Batey, Robert

Morris, Peter

Davies, Jane

Fernandes, David

Thomas, Sajan

Abeyaratne, Asanga

Lawton, P

Barzi, Federica

Taylor, Sean

Mayo, Mark

Cass, Alan

Majoni, Sandawan William

2024-07-15

Engagement and partnership with consumers and communities throughout research processes produces high quality research meeting community needs and promoting translation of research into improved policy and practice. Partnership is critical in research involving Aboriginal and/or Torres Strait Islander people (First Nations Peoples) to ensure cultural safety. We present lessons from the design, implementation and progress of the National Health and Medical Research Council funded INtravenous iron polymaltose for First Nations Australian patients with high FERRitin levels on hemodialysis (INFERR) clinical trial.The trial was designed to understand the benefits and harms of iron therapy in First Nations Australians on haemodialysis with anaemia and hyperferritinaemia. The lack of evidence for treatment was discussed with patients who were potential participants. A key element ensuring safe conduct of the INFERR trial was the establishment of the Indigenous Reference Groups (IRGs) comprising of dialysis patients based in the Top End of Australia and Central Australia. Two IRGs were needed based on advice from First Nations communities and researchers/academics on the project regarding local cultural differences and approaches to trial conduct. The IRGs underpin culturally safe trial conduct by providing input into study materials and translating study findings into effective messages and policies for First Nations dialysis patients. Throughout the trial conduct, the IRGs' role has developed to provide key mechanisms for advice and guidance regarding research conduct both in this study and more broadly. Support provided to the IRGs by trial First Nations Research Officers and independent First Nations researchers/academics who simplify research concepts is critical. The IRGs have developed feedback documents and processes to participants, stakeholders, and the renal units. They guarantee culturally safe advice for embedding findings from the trial into clinical practice guidelines ensuring evidence-based approaches in managing anaemia in haemodialysis patients with hyperferritinaemia.Active consumer and community partnership is critical in research conduct to ensure research impact. Strong partnership with consumers in the INFERR clinical trial has demonstrated that First Nations Consumers will engage in research they understand, that addresses health priorities for them and where they feel respected, listened to, and empowered to achieve change.In this paper, we present the importance of actively involving consumers in the planning, implementation and conduct of research using the example of a clinical trial among Aboriginal and/or Torres Strait Australians (First Nations Australians) who have kidney disease and are currently receiving haemodialysis. The study assesses how safe and effective it is for people on dialysis to receive iron given through the vein during dialysis when they have anaemia and high levels of a blood test called ferritin, a test used routinely to measure iron levels. Two consumer reference groups of First Nations patients on dialysis, one based in the Top End of Australia and the other based in Central Australia, are supported by First Nations Research Officers and Research Academics to make sure that the research is performed in a way that involves, respects and values First Nations participation, culture, and knowledge. Active consumer and community partnership in this study has supported robust research governance processes which we believe are crucial for knowledge translation to have a positive impact for patients.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Top End INFERR Clinical Trial Indigenous Reference Group (The Top End Medical Iron Research and Study Advisory Group), Menzies School of Health Research, Northern Territory, Australia.

Central Australia INFERR Clinical Trial Indigenous Reference Group (The First Nations Iron Study Advisory Group - Central & Barkly), Menzies School of Health Research, Central Australia, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Northern Territory Department of Health, NT health, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Department of Infectious Diseases, Division of Medicine, Royal Darwin Hospital, Northern Territory, Darwin, Australia.

Department of Nephrology, Division of Medicine, Alice Springs Hospital, NT health, Alice Springs, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Department of Nephrology, Division of Medicine, Alice Springs Hospital, NT health, Alice Springs, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Department of Nephrology, Division of Medicine, Alice Springs Hospital, NT health, Alice Springs, Northern Territory, Australia.

Flinders University and Northern Territory Medical Program, Alice Springs Campus, Alice Springs, Northern Territory, Australia.

Flinders University Centre for Remote Health, Alice Springs, Northern Territory, Australia.

Department of Nephrology, Division of Medicine, Alice Springs Hospital, NT health, Alice Springs, Northern Territory, Australia.

Northern Territory Department of Health, NT health, Northern Territory, Australia.

Flinders University and Northern Territory Medical Program, Alice Springs Campus, Alice Springs, Northern Territory, Australia.

Chemical Pathology-Territory Pathology, Department of Health, Northern Territory Government, Northern Territory, Australia.

Department of Nephrology, Division of Medicine, Royal Darwin Hospital, NT Health, P.O. Box 41326, Northern Territory, Casuarina, Darwin, Australia.

Department of Nephrology, Division of Medicine, Royal Darwin Hospital, NT Health, P.O. Box 41326, Northern Territory, Casuarina, Darwin, Australia.

Department of Nephrology, Division of Medicine, Royal Darwin Hospital, NT Health, P.O. Box 41326, Northern Territory, Casuarina, Darwin, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Department of Endocrinology, Division of Medicine, Royal Darwin Hospital, NT health, Northern Territory, Darwin, Australia.

Northern Territory Department of Health, NT health, Northern Territory, Australia.

Child Health Division, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Department of Pediatrics, Division of Women, Children and Youth, Royal Darwin Hospital, NT health, Northern Territory, Darwin, Australia.

Department of Infectious Diseases, Division of Medicine, Royal Darwin Hospital, Northern Territory, Darwin, Australia.

Global and Tropical Health Division, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Department of Nephrology, Division of Medicine, Alice Springs Hospital, NT health, Alice Springs, Northern Territory, Australia.

Department of Nephrology, Division of Medicine, Alice Springs Hospital, NT health, Alice Springs, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Department of Nephrology, Division of Medicine, Royal Darwin Hospital, NT Health, P.O. Box 41326, Northern Territory, Casuarina, Darwin, Australia.

Northern Territory Medical Program, Flinders University, Royal Darwin Hospital Campus, Northern Territory, Darwin, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

The Central Clinical School, Monash University & Alfred Health, Melbourne, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

UQ Poche Centre for Indigenous Health, The University of Queensland, St Lucia Queensland, 4067, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Northern Territory Department of Health, NT health, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia.

Division of Wellbeing and Preventable Chronic Diseases, Menzies School of Health Research, Charles Darwin University, Northern Territory, Australia. sandawanaw@aol.com.

Department of Nephrology, Division of Medicine, Royal Darwin Hospital, NT Health, P.O. Box 41326, Northern Territory, Casuarina, Darwin, Australia. sandawanaw@aol.com.

Northern Territory Medical Program, Flinders University, Royal Darwin Hospital Campus, Northern Territory, Darwin, Australia. sandawanaw@aol.com.

Research involvement and engagement 2024 10 1 73-

2056-7529

https://pubmed.ncbi.nlm.nih.gov/39010175/?otool=iaurydwlib

https://hdl.handle.net/10137/13480

Aboriginal and/or torres strait Islander peoples

Clinical trial

Communities

Consumers

Engagement

First nations peoples

Haemodialysis

INFERR

Partnership

Reference groups

Research

Engagement and partnership with consumers and communities in the co-design and conduct of Research: Lessons from the INtravenous iron polymaltose for First Nations Australian patients with high FERRitin levels on haemodialysis (INFERR) clinical trial.

Journal Article

Publication