Rethinking diabetes care for Indigenous Australians: the need for Indigenous‐codesigned and led diabetes models of care

Despite concerted efforts, stark gaps in health outcomes and life expectancy between Indigenous and non‐Indigenous Australians persist.1 As illustrated by the annual Closing the Gap reports, progress is slow. Only five out of 19 targets are on track, with no improvement in life expectancy gaps, and children in out‐of‐home care and adult imprisonment rates.1 The life expectancy for Indigenous men and women is nine years less than for non‐Indigenous Australians (72 v 81 years and 76 v 84 years, respectively), which compares unfavourably with other nations, but has only slightly narrowed despite government initiatives on disease prevention, and primary care and health workforce expansion.2 Innovative approaches involving Indigenous communities and leadership, funding, and both top‐down and grassroots approaches are needed.

Positionality statement

The research team comprises both Aboriginal and non‐Aboriginal researchers with diverse backgrounds, lived experiences, and professional expertise. Natalie Nanayakkara is a non‐Indigenous endocrinologist with over eight years of experience providing clinical care to rural and remote Aboriginal communities in Victoria. Sharon Atkinson‐Briggs is a Yorta Yorta Elder, registered nurse, and credentialled diabetes educator who holds a PhD in Indigenous diabetes, completed under the supervision of Laima Brazionis and Alicia Jenkins. She brings extensive research experience and over two decades of leadership in Aboriginal education and health across both the community‐controlled and mainstream health sectors. Alicia Jenkins is a non‐Indigenous endocrinologist with a long‐standing commitment to Indigenous health and diabetes care and previously held a Centre of Research Excellence and a National Health and Medical Research Council Partnership grant that studied diabetic retinopathy in Indigenous Communities, and that research included Indigenous Australians, trained 19 Indigenous health workers in diabetes‐related eye imaging, and had input from the local boards. Sharon Atkinson‐Briggs was a member of the research teams for both of these retinopathy‐related projects. Neale Cohen is a non‐Indigenous endocrinologist with more than 20 years of experience in Indigenous health research and clinical service delivery in remote Aboriginal communities in Central Australia.

Factors behind the mortality gap

A complex interplay of factors contribute to the mortality gap, including infant mortality, accidents, violence, smoking, and chronic diseases.3 Diabetes, kidney and cardiovascular disease accounts for about two‐thirds of the life expectancy differential.3 Medical issues are often compounded by socio‐economic disadvantage, with Indigenous Australians experiencing higher rates of poverty, unemployment, inadequate housing, food insecurity, low health literacy, suboptimal health risk behaviours, and lower educational attainment, all linked to poor health outcomes.4,5,6 Lifestyle factors contribute to health outcomes. Smoking rates among Indigenous Australians are threefold higher than those for non‐Indigenous Australians, and are estimated to account for 23% of the total disease burden gap.7,8 Smoking also increases cancer risk. As water supplies, particularly in remote areas, are often suboptimal, and bottled water is costly, there is overconsumption of soft drinks, which are less expensive and more often refrigerated.9 Sugar‐sweetened beverage consumption helps drive obesity, which has a prevalence of 39% in Indigenous people and 22% in non‐Indigenous people.10

Diabetes and its complications, particularly chronic kidney disease, retinopathy and cardiovascular disease, have a disproportionate toll on Indigenous people. Over 65 000 people (13% of Indigenous Australians) have diabetes, predominantly type 2 diabetes, which is nearly triple the national rate.3 Diabetes onset in Indigenous people is decades earlier than in non‐Indigenous Australians.11 Several factors drive this excess risk, including higher obesity rates, sedentary lifestyles, and, in rural or remote areas, limited access to health care services and affordable healthy foods.12 As in other Indigenous groups globally, genetic and epigenetic factors may also modulate insulin resistance, pre‐diabetes and diabetes.13,14

Diabetes and kidney disease in Indigenous people

Diabetes accounts for 7.3% of Indigenous deaths, 4.7 times that of non‐Indigenous Australians2 with death rates of Indigenous Australians in remote areas 8.8 times higher than that of non‐Indigenous Australians.11 Similarly, diabetes‐related hospitalisations of Indigenous Australians are four times the rate of non‐Indigenous people. Chronic kidney disease affects 20% of Indigenous Australians with diabetes and accounts for 10% of new patients with end‐stage renal disease annually.15 Compared with non‐Indigenous counterparts, Indigenous peoples have over six times the end‐stage renal disease risk and are less likely to receive kidney transplants, necessitating dialysis, which greatly reduces patient and carer quality of life and social and emotional wellbeing.16,17 Other prevalent complications among Indigenous Australians include retinopathy (29.4%) and poor vision (often due to uncorrected refraction errors), neuropathy (41.2%), and cardiovascular disease (47.1%).2,18 These poor outcomes are driven by many factors, including marked hyperglycaemia and failure to reach targets for blood pressure, lipids and body weight. Prevention, early detection and care of diabetes complications through improved models of care represent an opportunity to narrow health disparities.

Several new therapeutics may improve outcomes. Sodium–glucose co‐transporter 2 (SGLT‐2) inhibitors and glucagon‐like peptide‐1 (GLP‐1) receptor agonists (GLP‐1 RAs) have benefits including glycaemia, weight loss, and cardiovascular and renal protection,19 which could prove valuable for Indigenous Australians given their disproportionate burden of obesity, diabetes, cardiovascular disease and chronic kidney disease. However, there are access challenges and little data on their effectiveness, safety and acceptability in Indigenous populations. Relevant research, advocacy, and translational activities are crucial to ensure that cutting‐edge therapies reach all those who may benefit.

The higher diabetes risk of Indigenous Australians is compounded by over 20% of this population living in remote or very remote areas, regions that are associated with a five‐year lower life expectancy than urban settings.1 These areas often also lack access to comprehensive, responsive health care services; diabetes education for patients; Aboriginal health practitioners; and uptake of screening and monitoring tests, even though point‐of‐care finger prick‐based tests are often available at Indigenous health services.20,21 Lack of healthy, affordable foods and water further hampers outcomes.21 Providing coordinated, multidisciplinary, best practice‐aligned diabetes care is challenging in isolated settings with limited resources, workforce shortages and high staff turnover. Therefore, it is important to explore and rigorously evaluate novel care delivery models optimised for rural and remote Indigenous contexts, such as community outreach, mobile clinics, telehealth, and task‐shifting responsibilities with community health care providers. Developing innovative solutions in collaboration with Indigenous communities is crucial.

Community engagement and Indigenous leadership are pivotal

Community engagement and Indigenous leadership are pivotal to inform effective health‐related interventions.17 Aboriginal Community Controlled Health Services have improved access and patient engagement by prioritising self‐determination and culturally safe care delivery. As an example, a model of care by author SAB, embedding eye screening in diabetes education in Indigenous health general practice services, showed the feasibility of this model for increasing eye screening rates to up to 79%, a rate shown to be associated with lower rates of diabetes‐related vision loss.22 Unfortunately, ongoing funding for trained Indigenous staff was unavailable, even though many services have on‐site retinal cameras. The Box provides relevant publications and examples of Indigenous Australian co‐designed or led studies. Inconsistent funding and support hamper the scale‐up of successful interventions. For the best chance of success, Indigenous communities must be empowered to co‐design accredited diabetes programs and services tailored to local resources, customs and priorities, and from which registered practitioners can earn continuing professional development points. This includes upskilling local health workers to provide comprehensive care with training, support and ongoing mentorship from specialist diabetes clinicians and researchers. Additional staff must be employed to undertake tasks when workloads are at capacity.

New therapeutics are positively transforming diabetes outcomes. However, delivering these therapies in many communities is challenging and under‐resourced. Overcoming inequities will require reconsidering and restructuring some traditional care models. It is important to rethink and appropriately resource models of care and provide robust evidence of their feasibility and efficacy. Potential innovations include improved community outreach such as mobile clinics to expand geographic reach, increased telehealth, and upskilling well trained community health workers and multidisciplinary teams. Care pathways should be redesigned through community‐led quantifiable quality improvement initiatives. However, deviating from long‐established practices requires robust evidence evaluating the effectiveness, feasibility, acceptability and sustainability of alternative models. This will require adequately powered clinical trials with long term real‐world follow‐up to definitively assess clinical outcomes, cost‐effectiveness and patient and health care provider experiences. For example, a pilot program testing the Flinders Model of self‐management, which comprised a patient‐centred, self‐management assessment and care planning conducted by Indigenous health workers, found improved glycated haemoglobin (HbA_1c) levels and diabetes self‐management scores.28 The Lower SUGAR study36 in two remote communities, comprising 32 Indigenous Australians with type 2 diabetes, found a significant HbA_1c level improvement of 3.1% over 20 weeks using weekly nurse‐administered exenatide and review, compared with standard care. There is a lack of long term randomised controlled trials evaluating interventions to improve obesity and diabetes care in Indigenous people,37 and a follow‐up IMPROVE SUGAR trial will soon commence.

The prospective IMPROVE SUGAR trial (Australian New Zealand Clinical Trials Registry, ACTRN12624001231538) will evaluate an intensive versus standard care model in Australian rural and remote Indigenous communities using tirzepatide (a combined GLP‐1 and glucose‐dependent insulinotropic polypeptide [GIP] agonist) over 12 months. A cost analysis of this model of care is part of this large national trial. This study was developed in collaboration with Indigenous people with diabetes, Indigenous health care workers and community representatives, and includes health worker employment, training, an Indigenous Advisory Board and Indigenous investigators.

Conclusion

The scale and complexity of diabetes in rural and remote Indigenous communities is a nationally important urgent health issue. The current paradigm, resources and strategies are inadequate. New therapies and treatment strategies are urgently needed to improve health outcomes. Innovative approaches designed and trialled in partnership with and by Indigenous health care providers with the support of national health organisations, including the National Aboriginal Community Controlled Health Organisation, and state health organisations, such as the Victorian Aboriginal Community Controlled Health Organisation, may provide evidence‐based solutions. These solutions will require considerable resources. However, this is highly likely to be cost‐effective in the medium to long term, with reduced chronic complications and hospitalisation costs. Solutions from co‐designing comprehensive diabetes services and care pathways optimised for rural and remote contexts, ensuring the accessibility of novel therapies and upskilling local health workforces must be evaluated to provide the evidence base for the best way forward. Closing entrenched gaps will require embracing Indigenous leadership while providing substantial resources to match the scale of this challenge. Prioritising research is crucial to building the evidence base to determine which solutions demonstrate real‐world impacts. With concerted, multidisciplinary, culturally informed efforts, meaningful progress can be achieved in improving diabetes care and, ultimately, improving the health of Indigenous communities nationwide.