Social determinants of health

Being valued, loved and safe for children and young people, from conception and through their developing years, enables “children and young people in Australia [to] reach their full potential by growing up safe and supported, free from harm and neglect”1 (Box). It is one of seven domains considered in this MJA supplement on the Future Healthy Countdown 2030. Feeling loved and safe is recognised as vital to a child's development. A child's feelings about themselves, their confidence, and their capacity to be resilient are all affected by the way their parents and carers respond to them. Warm, loving and affectionate relationships with newborns, infants and children enable a child to feel safe and secure as well as loved. Secure children are more likely to be happy, confident, able to cope with conflicts and anger, and curious to explore and learn.2 Childhood and youth are periods of learning how to take one's place in the world as an adult. Relationships are known to be central to children's development of self‐acceptance, self‐esteem, and higher functioning and thinking skills that contribute to positive learning and later life outcomes.1 Learning suffers when a child or young person fears for their safety or is not confident they are of value.3 Children and young people who are valued by teachers and other adults in their life, such as those supporting them in social and sporting activities, feel safe in those relationships and are able to feel safe about their future. Feeling safe about the future can include feeling safe about the world they are growing up in, including safety in society, in online settings, and in the environment, now and with a view to the future.4 Feeling loved, valued and safe are universal values that transcend cultures and countries. Cross‐cultural studies of historical and diverse models of and for child rearing — ways in which all communities aim to raise children to be the kind of adults valued in that community — have been shown to have four consistent methods to ensure children are brought up to respect and live within the values that are central to the community. These values are: community culture and practices provide children with constant and consistent exposure to the values that are central to a community; practices within the community make the child's experience of learning about the community's values emotionally arousing and engaging for the child; the child's behaviour in keeping with those values is approved or disapproved of by the wider community; and the community environment emotionally trains children to predispose them towards living as an adult within those values.5 Australia has a national commitment to ensuring “all children and young people reach their full potential by growing safe and supported, free from harm and neglect”.6 Safe and Supported: the National Framework for Protecting Australia's Children 2021–2031 sets a national goal to “make significant and sustained progress in reducing the rates of child abuse and neglect and its impacts across generations”.6 Priority groups for the Framework are: children and families with multiple and complex needs; Aboriginal and Torres Strait Islander children and young people experiencing disadvantage or who are vulnerable; children and young people with disability and/or parents/carers with disability experiencing disadvantage or who are vulnerable; and children and young people who have experienced abuse and/or neglect, including those in out‐of‐home care or leaving care. The National Framework represents a consensus of contemporary expectations for Australia's children and future adults. However, in Australia, through 2021–22, 55800 children were placed in out‐of‐home care and 45500 children were found to have been maltreated.7 In 2022, 42.8% of children in out‐of‐home care were Aboriginal and Torres Strait children.8 In 2019–20, one in 32 children in Australia between the ages of 0 and 17 years received child protection services, with 46000 children in out‐of‐home care in that year, a rate of eight per 1000 children. Indigenous children continue to be overrepresented with one in six Indigenous children receiving child protection services, and 18900 (ie, one in 18) Indigenous children in out‐of‐home care at 30 June 2020 — 11 times the rate for non‐Indigenous children.9 Child maltreatment in Australia has been shown to be a major public health issue. In a world‐first study of over 8000 people aged 16 years and older (with oversampling of 16–24‐year‐olds), five forms of child maltreatment were examined. One or more types of child maltreatment were reported by 62% of people, with multiple types of maltreatment more common for gender diverse respondents (66%) and women (43%).10 As a first‐ever population representative study of child maltreatment, this provides a grim mirror to our societal aspirations for our children and the future adults our society would wish them to be. The impacts of not feeling valued, loved or safe are well established. Emotional neglect of a child — not being valued or loved by primary carers — is the dysfunction of the protective parental relationship on which children depend while they learn the skills needed for safe independence. It is also central to all abuse, and is described as frequently its most damaging aspect.11 Children who do not have healthy relationships or attachments are more vulnerable to emotional volatility, to stress and, in adult life, to problems in personal relationships and with authority figures.12 These effects are not only social and emotional, they are also physiological with impacts on an individual's immune system and a higher likelihood of preventable chronic diseases and risky health behaviours in adulthood. Along with adequate nutrition, sufficient freedom from stress and anxiety, emotional and physical safety and encouragement are necessary conditions for development and learning. Poor mental health early in a child's life is more common among children with more difficult life circumstances, such as those living with a disability and those living in poverty. Half of all adult mental health concerns are evident before the age of 14 years. Less than half of children with mental health challenges have been found to receive professional help.13,14 This has been recognised by the National Support for Child and Youth Mental Health Program and the National Children's Mental Health and Wellbeing Strategy. The Strategy acknowledges that the mental health and wellbeing of children requires that children need to feel safe, happy and supported, and to have loving connections with family, friends and community.13 Being loved and valued is considered by children and adults to be the most important contributor to a good life. During development of the Nest, Australia's national framework for child and youth wellbeing, by the Australian Research Alliance for Children and Youth (ARACY), a participant survey that was considered broadly reflective of the population was undertaken.15 Of the 300 respondents, 78% of young people and 88% of adult participants said that being “loved and valued” was one of the top three aspects of wellbeing. In addition, being “safe” was identified by half of the survey respondents as one of the most important contributors to wellbeing.16 The Nest developed descriptors for each of these central factors and these were recently updated in 2021 with a new generation of child and youth voices.17 Being loved and safe is described as having loving, trusted relationships with family and friends. It involves a child or a young person feeling valued by teachers and other adults in their life and knowing they are important to others and that others are caring and supportive of them. It involves feeling safe at home, in the community and online. Safety also means feeling safe about their future, which includes the knowledge that the environment and climate are a priority and are being protected.4 Children and young people who are loved and safe have positive family relationships and connections with others together with personal and community safety. They are confident, have a strong sense of self‐identity, and have high self‐esteem. These children and young people form secure attachments, have pro‐social peer connections and positive adult role models in their lives. They are resilient and can respond constructively to setbacks and unanticipated events.18 For Australia to move surely and determinedly from a nation in which the experience of maltreatment as a child is reported by almost two‐thirds of a representative sample of our population, what do we need to do to bring about change and how will we know we are making progress? Policy priorities for children's wellbeing and safety The first 1000 days of a child's life, from conception to two years of age, is an important foundational period which shapes a child's development and wellbeing. Children thrive when they have supportive environments in these early years.19 Based on the evidence of the significance of this period for children's immediate and future development and wellbeing, a collaboration of Australian organisations recommended that public awareness of the importance of the first 1000 days should be raised. The Strong Foundations Collaboration urged that there should be greater investment in services for future parents and new families, particularly through targeted and practical services for at‐risk populations, with investment in research to understand what works in antenatal care and the impact of housing circumstances, among other social determinants of health, on children's development.20 The National Framework for Protecting Australia's Children6 aims to improve outcomes for vulnerable children through actions in four areas. The first of these is a national approach to early intervention and targeted support for children and families experiencing vulnerability or disadvantage;21 the second is reducing the over‐representation of Aboriginal and Torres Strait Islander children in child protection systems. These two areas of focus are emphasised in the Nest action agenda, which recommended investments in:18 a national universal platform of services for all children aged 0 to three years, providing an important foundation for the development of resilience; expansion of parental support programs tailored to particular skills and capabilities at key life stages and transition points and targeted for families under stress, such as those living with mental health or drug and alcohol issues, financial pressures, or family violence; and placement prevention and intensive family support services to prevent placement of children and youth in out‐of‐home care. There is consistent evidence and agreement that focusing on future parents, new families and particularly those families known to be vulnerable is essential if Australia is to increase the proportion of children who are valued, loved and safe, and have the opportunity to develop into resilient and confident adults. The additional areas of focus in the Framework address infrastructure requirements to support improved outcomes for children — that is, increasing capacity to collect, share and measure outcomes in child safety through improved information sharing, data development and analysis, and strengthening the child and family sector and workforce capability.21 Indicators of what matters Existing measures of the extent to which Australia's children are valued, loved and safe are primarily deficit focused — identifying children whose nurturing environments are not meeting these needs. These measures include children referred to child protective services, children in out‐of‐home care, and children identified with mental health needs. Other measures, such as the Australian Early Development Census, provide a whole‐of‐population measure of child development and risk factors. Reducing these measures at the population level and reducing these indicators for Aboriginal and Torres Strait Islander children in line with those in the general population would demonstrate progress toward improved outcomes for individual children. These key indicators are: children in out‐of‐home care (aged 0–17 years, per 1000 children); children developmentally vulnerable in one or more domains of the Australian Early Development Census;22 children receiving child protective services (aged 0–17 years, per 1000 children); children experiencing family conflict (percentage of adults who have children in their care while experiencing violence from a current partner); and percentage of young people extremely or very concerned about family conflict. Additionally, an indicator of children reporting bullying in education, social and online environments (such as the Longitudinal Study of Australian's Children and the eSafety Commissioner's Youth Digital Participation Survey) is an important measure of safety and wellbeing for students and young people.23 Measuring the reach and impact of support programs and investments in families and children with complex and multiple needs, and children in vulnerable population groups, particularly through the first 1000 days of life, would introduce a strengths approach to policy focusing on the capacity of Australian society to support children to be valued, loved and safe. Indicators would include government investments in frameworks providing parental, newborn and infant support through the first 1000 days of life, particularly for vulnerable population cohorts and families.20 Box – “Valued, loved and safe” for Australian children, young people and future generations What are the most pressing issues where change could make a real difference by 2030 and why? Being valued, loved and safe enables “children and young people in Australia [to] reach their full potential by growing up safe and supported, free from harm and neglect”.1 Without these fundamental societal values children and young people are insecure and cannot thrive. Pressing issues in Australia include maltreatment, lack of warm, loving and affectionate parenting/caregiving, and lack of safe home, community and online environments. What are some of the key indicator measures available and what is lacking? Key indicators: proportion of ≥16‐year‐olds reporting child maltreatment; proportion of 0–17‐year‐olds in out‐of‐home care; and proportion of 0–17‐year‐olds receiving child protection services. What is lacking? We are lacking strength‐based measures, such as the reach and impact of support programs and policy investments in the first 1000 days and key transition periods like becoming parents. What are the key baseline data on these indicator measures that are available? 62% of Australians aged ≥16 years reported personal experience of child maltreatment in a 2021 national survey. 3% of 0–17‐year‐olds received child protection services in 2019–2020 (17% for Aboriginal and Torres Strait Islander Australians). 0.8% of 0–17‐year‐olds were in out‐of‐home care in 2019–2020 (5.5% for Aboriginal and Torres Strait Islander Australians).

Rosemary Calder · Penny Dakin

Material basics are essential for our health and wellbeing.1 They represent one of seven domains considered in this supplement on the Future Healthy Countdown 2030. The Nest framework, developed by the Australian Research Alliance for Children and Youth, defined this domain in 2021 through interviews with children and young people.2 According to their collective voices, material basics include stable and suitable housing, nutritious food, and clean water and air.2 They also include necessary school supplies and technology, the ability to take part in social activities, and access to transport and open spaces.2 Material basics are met when families have enough money for all these needs and items.1,2 Children who are raised in families experiencing material deprivation — such as poverty, homelessness or social exclusion — have increased risks of psychological or socio‐emotional difficulties, behavioural problems, educational difficulties, and poor mental health as they grow.3,4 Australia's children and young people shoulder specific inequities. The greatest gaps in outcomes and opportunities exist between Aboriginal and/or Torres Strait Islander families and non‐Indigenous families.5 They are also common for children in rural and remote settings compared with those in major cities.5 Not only a problem for the individual, these entrenched, lifelong disparities harm society by increasing health service costs and reducing economic productivity.6 Meeting basic material needs buffers children, young people and families from the negative consequences of early adversity and enhances the environments that support all children to thrive.7 The measurement of material basics is informed by three complementary and well established areas of science. The first is Maslow's hierarchy of needs, which recognises and outlines basic human needs from water and housing through to personal empowerment.8 The second area encompasses the non‐health factors that play a substantial role in our health and wellbeing, known as the social and cultural determinants of health.9 These determinants, and the way our health, educational and social systems are designed to entrench them, are more impactful than almost all our available health services and supports.10 The third area is the increasing knowledge that adverse childhood experiences drive adult and intergenerational outcomes.11 Adversity refers to experiences of hardship, ranging from poverty and unstable or unsuitable housing through to neglect and abuse. The greater the number and severity of negative early life experiences, the higher the risk of poorer lifelong health and wellbeing.11 Together, these areas of science point to a broad but mutable range of determinants which, if ameliorated, would fundamentally alter children's and young people's developmental trajectories.12 Beyond the individual, such changes would also produce a measurable, positive change in key economic metrics and create a healthier society.13,14 Due to the broad‐ranging nature of material basics, measurement can vary. The Nest definition of this domain intentionally includes all the relevant components, as this enables communities and governments to choose the areas that most align with their contexts and policy priorities. For the Future Healthy Countdown 2030 context, we considered the following criteria to guide our thinking: items that are measurable and reportable now; items that are amenable to policy action within a short (one to five‐year) timeframe; and items that are likely to make the most impact when implemented from birth to early adulthood (ages 0–24 years). We acknowledge the tension between outcome areas that require universal solutions (provided to the whole population) and those that require targeted solutions (provided to priority subpopulations) even if delivered from a universal base (proportionate universalism). Notably, there are no annual, nationally representative measures of material basics in Australia. Australian censuses conducted by the Australian Bureau of Statistics most closely meet our criteria, with sufficient sample size and data on three domains collected every five years for all priority populations: childhood poverty (ages 0–24 years); housing stress, overcrowding and homelessness (ages 0–24 years); and young people not in education, employment or training (ages 15–24 years). At a minimum, these non‐health determinants must be met to enable a healthy and equitable society. Below, we describe Australian census data on these domains for all children, and by sex (noting that sex [not gender] was collected in the censuses), remoteness, and Aboriginal and/or Torres Strait Islander identity. Distribution of these data by relevant age groups is presented in Box 1, Box 2, Box 3, Box 4, Box 5 and the Supporting Information, and our key findings and conclusions are summarised in Box 6. We recognise that reporting proportions is limited, and that it would be more informative to also measure the amount of time young people experience adverse conditions. Poverty Increased household income benefits children directly through better food, stable housing, and health care (the “investment model”), and indirectly through improved parent mental health and capacity (the “family stress model”).7,15,16 In Australia, the poverty line has been traditionally defined by government as below 50% of median equivalised household income.17 The numbers and proportions of children and young people in poverty from the three most recent censuses are shown in Box 1 and the Supporting Information (table 1). In 2021, when Australia's population was 25.5 million, 586274 children aged 0–14 years (13.2%) and 293672 young people aged 15–24 years (10.2%) were living in poverty. The proportion of Aboriginal and/or Torres Strait Islander children living in poverty (31.4%) was higher than that for non‐Indigenous children (12.1%). In 2021, poverty was highest in remote and very remote areas (22.8%, compared with 12.2% in with major cities) and in the least advantaged areas (30.6%, compared with 3.7% in the most advantaged areas), as defined by the Australian Bureau of Statistics Socio‐Economic Indexes for Areas.18 No difference was found between boys (13.3%) and girls (13.2%) aged 0–14 years. In 2016, the overall childhood poverty proportion was 20.0% (829132), suggesting that rates decreased in 2021. This may have been due to the temporary income supplements provided in response to the coronavirus disease 2019 (COVID‐19) pandemic (eg, JobKeeper and JobSeeker payments). By September 2020, the pandemic economic responses had reduced poverty and housing stress to beyond pre‐pandemic levels, but these rebounded a year later after the financial supports were withdrawn.19 Housing stress, overcrowding and homelessness In this section, we describe three separate but related measures of housing, as each offers policy levers for intervention. Housing stress Housing stress is experienced when more than 30% of gross equivalised household income is spent on housing costs such as rent payments and mortgages.20 High housing costs cause increased financial stress, can reduce a household's ability to pay for other living expenses (such as food, transport, utilities and clothing), and can negatively affect health and wellbeing.21 As shown in Box 2 and the Supporting Information (table 2), an estimated 12.1% of 0–24‐year‐olds (803962) lived in conditions of housing stress in 2021 — a decrease from 14.1% in 2016. Of the total children and young people experiencing housing stress in 2021, 529433 of all children aged 0–14 years (12.9%) experienced housing stress and 274529 of young people aged 15–24 years (10.8%) experienced housing stress. Housing stress was greater for Aboriginal and/or Torres Strait Islander children (20.0%) than for non‐Indigenous children (12.2%). Housing stress was also higher for children in major cities (13.1%) than for those in remote and very remote areas (6.9%). In addition, it was higher for children living in the least advantaged areas (25.2%) compared with those living in the most advantaged areas (4.3%). In Australia, housing stress has increased with cost‐of‐living pressures. Inflation over the 12 months to March 2023 was 7.3%, and the increase in inflation during the 12 months to November 2022 was the fastest since the 1990s.22 While increases in cost of living are being experienced across the population, they are more pronounced for subgroups such as low income earners, mortgage holders and renters.22 Overcrowding Households are considered overcrowded if they require one to three extra bedrooms according to the Canadian National Occupancy Standard.23 As shown in Box 3 and the Supporting Information (table 3), 724327 children and young people (9.9%) were living in overcrowded households in 2021. Proportions were similar for different age groups and for boys versus girls. In the 2021 census, it was estimated that 47515 Aboriginal and/or Torres Strait Islander children (17.9%) lived in overcrowded conditions. Overcrowding was more common in remote and very remote areas (17.2%) compared with major cities (9.5%), and more common in households with children living in the least advantaged areas (20.1%) compared with those in the most advantaged areas (3.5%). Homelessness A person is considered to be experiencing homelessness if they are: living in an improvised dwelling, tent or sleeping out; living in supported accommodation for homeless people; staying temporarily with another household, including couch surfing; staying in a boarding house or other temporary lodging; or living in a severely overcrowded situation (requiring four or more extra bedrooms).23 As shown in Box 4 and the Supporting Information (table 4), 41107 children and young people (0.6%) were homeless in 2021. Rates of homelessness for children did not differ by sex, but 12411 Aboriginal and/or Torres Strait Islander children were homeless (3.0%). Of children aged 0–14 years living in remote and very remote areas, 4288 (4.7%) were homeless, and the homelessness rate for children aged 0–14 years who were living in the least advantaged areas (1.4%, 11287 children) was higher than that for children living in the most advantaged areas (0.1%). Young people not in education, employment or training As young people transition into adulthood, a key driver of poverty and poorer life outcomes is not continuing with employment, education or training (EET). As shown in Box 5 and the Supporting Information (table 5), census data from 2021 indicated that 274387 young people aged 15–24 years (9.6%) were not in EET, of whom 89660 were aged 15–19 years (6.5% of this age group) and 184726 were aged 20–24 years (12.5% of this age group). The lower proportion for those aged 15–19 years reflects the fact that most young people in this age group are still at school. Not being in EET was more common for male (10.3%) than female (8.9%) young people. Overall, proportions declined from 10.2% in 2016 to 9.6% in 2021. Although proportions for male young people were similar in 2016 and 2021, there was a 2.1% percentage point decrease for female young people aged 20–24 years (from 14.1% in 2016 to 12.0% in 2021). In 2021, the proportions of male and female Aboriginal and/or Torres Strait Islander 15–24‐year‐olds who were not in EET were almost the same (28.6% and 27.8% respectively); the proportions of male and female non‐Indigenous 15–24‐year‐olds who were not in EET differed more markedly (9.3% and 7.9% respectively). In 2021, for young people aged 15–24 years, the largest proportion not in EET were living in remote and very remote areas (27.9%), and a much smaller proportion were living in major cities (8.6%). More young people not in EET were living in the least advantaged areas (18.4%) than in the most advantaged areas (4.5%). What next? Attending to the material needs of children and young people seems a basic commitment of any just society. It is an area where the perspectives of child rights, economics and societal wellbeing align. We have shown that the proportions of children and young people who are deprived of material basics are stable, and the numbers are large. Although it is challenging to deal with these issues quickly, it should be possible to “move the needle” both in terms of absolute numbers and severity within the next seven years. Indeed, COVID‐19 pandemic support payments showed this, and are increasingly relevant as the cost of living increases and access to material basics decreases.24 Societies that front‐end their investment, spending more on childhood, are healthier societies.14 For next year's supplement on the Future Healthy Countdown 2030, we will invite researchers to demonstrate how ameliorating these factors is doable and beneficial. Current government policy agendas such as the Wellbeing Budget and the Early Years Strategy all point to this reality.25,26,27 Overseas, governments are moving this way too. Scotland, New Zealand, Iceland and Estonia have all made great strides, and the European Union has committed to a child guarantee which includes housing and a universal child benefit.28 The COVID‐19 pandemic has shown us that almost nothing is impossible, including giving families more money. So, if not now, then when? Box 1 – Proportion of 0–24‐year‐olds who were living in poverty (2011, 2016 and 2021 Australian census data) Box 2 – Proportion of 0–24‐year‐olds who were experiencing housing stress (2011, 2016 and 2021 Australian census data) Box 3 – Proportion of 0–24‐year‐olds who were living in overcrowded conditions (2016 and 2021 Australian census data) Box 4 – Proportion of 0–24‐year‐olds who were homeless (2011, 2016 and 2021 Australian census data) Box 5 – Proportion of 15–24‐year‐olds who were not in employment, education or training (2016 and 2021 Australian census data) Box 6 – Material basics for Australian children, young people and future generations What are the most pressing issues where change could make a real difference by 2030 and why? Material basics are essential for our health and wellbeing. Children raised in families experiencing material deprivation, such as poverty or housing instability, are more likely than other children to experience psychological or socio‐emotional difficulties, behavioural problems, educational difficulties, and poor mental health throughout life. What are some of the key indicator measures available and what is lacking? Key indicators include census data with proportions of children and young people (0–24‐year‐olds) who are: ‣ living in poverty; ‣ experiencing housing stress, overcrowding or homelessness; ‣ not in employment, education or training. What is lacking? ‣ annual measurement of these key indicators; ‣ population‐level measurement of material deprivation; and ‣ policies that consider material deprivation alongside traditional measures such as poverty. What are the key baseline data on these indicator measures that are available? Data collected in the 2021 Australian census showed that: ‣ 12.0% of 0–24‐year‐olds lived in poverty; ‣ 12.1% of 0–24‐year‐olds experienced housing stress, 9.9% experienced overcrowding and 0.6% experienced homelessness; and ‣ 9.6% of 15–24‐year‐olds were not in employment, education or training.

Sharon R Goldfeld · Anna MH Price · Fadwa Al‐Yaman

For tens of thousands of years, Aboriginal and Torres Strait Islander people have operated and thrived within sovereign societies. The sustained and systematic effects of colonisation — which enabled the combined denial of Aboriginal and Torres Strait Islander people's self‐determination, autonomy, leadership, and capability to mobilise health‐benefiting resources — have created the situation in which we find ourselves today of poor health and systemic differences in health care access and outcomes.1 For kidney health in Aboriginal and Torres Strait Islander people, this situation is illustrated through the persistent inequities in kidney failure incidence rates, health system access, and treatment outcomes.2 Recorded rates of kidney failure requiring dialysis or transplantation among Aboriginal and Torres Strait Islander Australians have risen progressively over the past 40 years, remaining consistently higher than rates for non‐Indigenous Australians (Box 1). This difference is even more marked for Aboriginal and Torres Strait Islander people living in rural and remote areas.2 Aboriginal and Torres Strait Islander people have age‐adjusted incidence rates of kidney replacement therapy (KRT) — dialysis or transplantation — eight to nine times higher than those of non‐Indigenous Australians, with the median age of Aboriginal and Torres Strait Islander people who experience kidney failure being nearly 30 years younger than non‐Indigenous people.3 Furthermore, for Aboriginal and Torres Strait Islander people receiving KRT, incidence rates vary considerably between location and age (Box 2), as well as sex (Box 3), with people in the Northern Territory, Western Australia, South Australia, and Queensland experiencing higher rates.2 Finally, the modality with which KRT is delivered differs, with Aboriginal and Torres Strait Islander people predominantly accessing dialysis through facility‐based haemodialysis, with lower rates of home‐based therapies (peritoneal and home haemodialysis).2 Access to kidney transplantation is substantially lower, reflecting lower waitlisting rates.2 Combined, these disparities mean that Aboriginal and Torres Strait Islander people with kidney failure are likely to spend substantially longer (typically years longer) on facility‐based dialysis, away from Country, community, and supportive networks. This dislocation serves to prolong and compound the disconnection, disempowerment and disruption felt by Aboriginal and Torres Strait Islander people when seeking kidney care in Australia.4 Why transplantation mattersFor people with kidney failure, kidney transplantation is the preferred treatment option where possible. Not only is transplantation associated with lower mortality, and a substantial improvement in quality of life,5 it is also less expensive in the long term, particularly when considering the cost of dialysis for rural or remote patients.6 Transplantation therefore provides direct clinical benefits to patients and financial benefits to health systems. Aboriginal and Torres Strait Islander kidney transplant recipients and family members — like nearly all other transplant recipients — also affirm the many health and wellbeing benefits of transplantation,7,8 and numerous community consultations have shown that Aboriginal and Torres Strait Islander people want a better understanding of, and access to, transplantation.9,10,11,12 Disparity in access to transplantation has been recognised for many years.13,14,15,16,17,18 Although absolute rates of waitlisting and transplantation have increased among Aboriginal and Torres Strait Islander peoples, substantial inequity remains in rates of waitlisting and transplantation compared with non‐Indigenous populations, as well as age at diagnosis, pre‐transplant treatment modality, and transplantation outcomes.2 Furthermore, the reasons behind the inequity remain. Studies have consistently shown that inequity in access to transplantation cannot be explained by patient‐ or disease‐related factors,14,15 and that the principal block is on getting onto the waiting list, rather than receiving a kidney once on the list.15 Receiving a kidney transplant requires patients to not just meet specific medical requirements, but also to navigate a complex process that includes multiple investigations, appointments, and ongoing reviews (Box 4). Each stage of this pathway can become a barrier to both waitlisting and transplantation. The difference in waitlisting highlights an important need to focus on the gaps in processes and the barriers within the health system, or more specifically, within clinical services caring for people with kidney disease. To better understand these systemic gaps, in 2018 the Australian Government funded an Expert Panel, through the Transplantation Society of Australia and New Zealand (TSANZ), to undertake a comprehensive review into the hurdles, service gaps, and practical challenges faced by Aboriginal and Torres Strait Islander people receiving treatment for kidney disease. The report recommended 35 high priority actions and mapped responsible agencies, identifying where the federal government could strategically enable cross‐jurisdictional consumer‐ and health service‐partnered approaches.19 From there, in March 2019, the then‐federal Minister for Health and the Minister for Indigenous Australians accepted the report, announcing a $2.3 million award for TSANZ to oversee a two‐year project to coordinate cross‐jurisdictional activity.20 This award established a national Taskforce whose overarching aim was to improve access to, and outcomes of, kidney transplantation for Aboriginal and Torres Strait Islander people. Establishing the TaskforceThe National Indigenous Kidney Transplantation Taskforce (NIKTT) was created to drive the development and implementation of initiatives that targeted knowledge and service delivery gaps identified by the TSANZ report, facilitating improved access to the kidney transplant waitlist and better post‐transplant outcomes for Aboriginal and Torres Strait Islander patients. As this supplement will go on to describe, the Taskforce set out to accomplish this through key objectives around: designing and implementing enhanced data collection and reporting processes on pre‐ and post‐transplant outcomes;improving the equity and accessibility of transplantation for Aboriginal and Torres Strait Islander patients by trialling a range of multidisciplinary service models and protocols; andreviewing existing initiatives that target cultural bias in health services to facilitate best practice care and support. To best inform Taskforce action on these objectives, the NIKTT also created a national network of Aboriginal and Torres Strait Islander consumers and established Indigenous Reference Groups at transplant units around the country. The development of a national Taskforce was critical to provide a focal point. Although many clinicians, researchers, patients and advocates have worked over the years to improve kidney health outcomes for Aboriginal and Torres Strait Islander people, there has not been a cohesive or coordinated approach to these challenges, nor has there been an opportunity to share and collaborate around service development. Led by an appointed Chair and Deputy Chair, the Taskforce was comprised of 24 other expert members including nephrologists, nurses, policy makers, researchers and, crucially, Aboriginal and Torres Strait Islander people with a lived experience of kidney transplantation and dialysis, as well as Aboriginal and/or Torres Strait Islander health workers. Although originally scheduled to be completed within two years, the onset of the coronavirus disease 2019 (COVID‐19) pandemic predictably altered the timeline of project implementation and the NIKTT was granted an extension until June 2023. A strategic focus of the Taskforce was embedding Aboriginal and Torres Strait Islander people's self‐determination and authority into designing models of care that aimed to improve access to kidney transplantation. The NIKTT set out to intentionally consolidate collaboration, partnership and leadership of Aboriginal and Torres Strait Islander people, as before the onset of the NIKTT, there was extremely limited systematic input of Aboriginal and Torres Strait Islander consumers into the processes of care in renal units and none in kidney transplant units. This supplement outlines the recommendations of the Taskforce through describing the outcomes and findings of each objective. We highlight the need for Aboriginal and Torres Strait Islander patient engagement and leadership, the importance of co‐designing models of care unique to local circumstances, and the challenges we still face as a community and health care system seeking to overcome cultural bias and institutional racism. We end this supplement with an overview of the Taskforce's recommendations for next steps and suggest direct actions that systems and services can take to build on the momentum established. The members of the Taskforce are privileged to be part of this foundational work with health communities and Aboriginal and Torres Strait Islander communities across Australia. As we progress equity from here, we look forward to working in partnership with patients, communities, health professionals, governments, health organisations, and research institutions to continue to improve access to kidney transplantation. We begin this supplement with a call to action for readers to join us in improving transplantation equity for all Aboriginal and Torres Strait Islander people with kidney disease. We, as Aboriginal and Torres Strait Islander people, know what is best for our health and wellbeing. While our people and cultures are strong and resilient, we continue to see harmful policies and practices implemented by government. While this can be difficult to hear, true change exists within discomfort, and progress is made when all parties are open to listening and responding. (Donna Murray, National Aboriginal and Torres Strait Islander Health Plan 2021–203121) Box 1 – Unadjusted incidence rate of kidney replacement therapy in Australia2 Reproduced with permission of the Australian and New Zealand Dialysis and Transplant (ANZDATA) Registry. Box 2 – Age‐specific incidence rates of treated kidney failure among Aboriginal and Torres Strait Islander Australians, by state and age at kidney replacement therapy start, 2016–20212 NSW = New South Wales; NT = Northern Territory; Qld = Queensland; SA = South Australia; Vic = Victoria; WA = Western Australia. Note the y‐axis scales vary between panels. Figure reproduced with permission of the Australian and New Zealand Dialysis and Transplant (ANZDATA) Registry. Box 3 – Relative incidence rate of treated kidney failure for Aboriginal and Torres Strait Islander Australians, by sex, compared with non‐Indigenous Australians, 2016–20212 Reproduced with permission of the Australian and New Zealand Dialysis and Transplant (ANZDATA) Registry. Box 4 – Generalised pathway to kidney transplantation, including key clinical milestones, for an Australian adult19 Adapted with permission from Garrard and McDonald.19

Jaquelyne T Hughes · Katie Cundale · Kelli J Owen · Stephen P McDonald

Kidney transplantation provides better quality and quantity of life for people with kidney failure.1 However, of the 14% of all prevalent dialysis patients who identify as Aboriginal and Torres Strait Islander within the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry, only 2% were waitlisted in 2021, compared with 8% of non‐Indigenous patients who were waitlisted.2 Equitably addressing this waitlisting gap was a significant priority of the National Indigenous Kidney Transplant Taskforce (NIKTT).3 Many barriers impede Aboriginal and Torres Strait Islander people who live with dialysis from accessing waitlisting, including slow or delayed assessments and referrals, cultural bias, misinformation, and the difficulties of distance (Box).4,5,6,7,8,9 The Commonwealth Department of Health and Aged Care awarded $1.3million to the NIKTT to enable competitive project sponsorships for health care providers to develop models of care that promoted waitlisting attainment. All funded projects extended previously successful models of care to address context‐specific barriers to waitlisting and transplantation. These sponsorship projects were pilots of local care delivery that aimed to overcome context‐specific barriers to kidney transplantation waitlisting. A more detailed evaluation of each of these projects will be available in the NIKTT's final report.10 Here, we provide a commentary on elements of each project that acted as enablers or challenges, to better understand what could be scaled or used to improve services in the future. We outline the strategies used to overcome barriers, what was learned from the projects, and the implications for further practice change. Outreach assessment clinics A substantial barrier to waitlisting in Western Australia is the travel burden required to attend workup appointments, as transplantation assessments typically occur in Perth. Sponsorship was provided for two projects to initiate outreach assessment clinics — found to be culturally sensitive models of care11,12 that increase equity of service delivery13,14 — into regional WA. Led by clinicians at Royal Perth Hospital and Sir Charles Gairdner Hospital and at Fiona Stanley Hospital, these projects were designed to increase the identification, assessment and waitlisting of suitable patients. Multidisciplinary teams, including transplant surgeons, nephrologists, transplant coordinators and renal nurses, attended eight to 15 days of clinics across three to five outreach visits. Alongside these outreach clinics, projects ran transplant education sessions for patients, communities, and health staff. Outreach assessment clinics led to increased numbers of patients activated and transplanted. Outreach clinics increased the number of patients commencing workup, the number of patients waitlisted (while decreasing the time to listing), and the number successfully transplanted (Supporting Information). Communities found the education sessions empowering, with groups in East and West Kimberley now working to form Indigenous Reference Groups.15 Key enablers of these outreach clinics included: (i) a full‐time transplant coordinator role, based locally or in Perth, who aided patient and clinic management; (ii) working closely with local Aboriginal medical services; (iii) patient, community and staff education sessions; and (iv) creating transplantation champions, both patients and staff, who understood regional barriers to transplantation and could motivate others. Key challenges, outside of coronavirus disease 2019 (COVID‐19) travel restrictions, involved the sustained funding of the outreach visits and transplant coordinator roles, as well as regional workforce vacancies. Patient navigators Institutional racism, and its impact on how cultural differences (including language, communication and protocols) influence service delivery, inhibits access to transplantation care.5,6,9 Funding was granted to groups in the Northern Territory, South Australia and Queensland to assist in the employment of patient navigators (or mentors; PNs) — roles that have been found to improve waitlisting through bridging cultural differences and providing otherwise unavailable support.16,17,18,19,20 PNs in this context are Aboriginal and/or Torres Strait Islander people with a lived experience of kidney failure and transplantation. PNs at Purple House (Panuku) in Alice Springs, Port Augusta Hospital Renal Unit, and Cairns and Hinterland Hospital and Health Service were employed to help patients by advocating for their needs, translating health knowledge, and providing culturally safe support. The projects found that PNs helped to increase the number of patients being assessed for eligibility, commencing workup, and being activated on the waitlist (Supporting Information). Navigators were able to develop a level of trust, understanding, effective two‐way communication, and enhanced informed decision making that was previously unseen in these contexts, because of their unique position as brokers of culturally appropriate knowledge and practice alongside lived clinical experience. PNs enabled better access to the waitlist through: (i) identifying and helping more patients undergo assessment; (ii) increasing awareness of transplantation through their presence in renal units and communities; (iii) providing culturally safe support through knowledge and guidance; and (iv) developing more suitable educational materials with renal teams based on patient feedback. Challenges included integrating PN roles into the health system, sustainable funding, and the potential for navigators to burn out without established support mechanisms. A key takeaway from the projects was the concept of the “invisible work” undertaken by PNs — such as late‐night phone calls or talking to patients and doctors about others’ issues when seeking care for themselves. This work is reflective of the holistic role that the navigators fulfil, but which cannot be easily translated into Western metrics. Further examination of this invisible work is ongoing. Educational resources A significant barrier to waitlisting involves the pervasive poor communication from health systems to patients, leading to missed opportunities and culturally unsafe care.6,8,9,21,22 The projects proposed the development of educational sessions and resources to educate patients and care providers on transplantation in local settings. Projects in the NT (Top End Health Service), WA (Royal Perth Hospital and Sir Charles Gairdner Hospital, Fiona Stanley Hospital), SA (Port Augusta Hospital Renal Unit and Pika Wiya Health Service Aboriginal Corporation), and Queensland (Princess Alexandra Hospital) developed patient and staff education sessions to improve understanding of waitlisting and transplantation. Educational sessions included topics such as workup process, remaining on the waitlist, medications, and post‐transplant care. Educational resources were tailored to local contexts by using place‐specific pictures and terms, translating documents into local languages, and consulting communities about the materials produced. Providing local, culturally relevant education to potential transplant patients led to better understanding of the complicated workup and transplant process, creating the opportunity for more patients to engage with workup while enhancing understanding of local processes. Education for health staff improved cultural awareness and understanding of local barriers (Supporting Information). A crucial element of both printed resources and in‐person educational sessions was that patients and communities participated in the development of shared content. The educational sessions especially benefitted from this structure, as they were able to adapt to changing circumstances (such as COVID‐19). Another important aspect of the educational sessions was that many were held on Country. By hosting sessions on the patients’ traditional lands, the projects promoted cultural safety for communities and also improved the cultural awareness and understanding of the visiting clinicians. Areas for development Recruiting, hiring and retaining Aboriginal and/or Torres Strait Islander staff proved challenging from both a workforce and institutional perspective.23,24,25 Two projects experienced workforce difficulties and did not achieve their outcomes. For one project, limitations on team members’ time and the inability to recruit suitable candidates meant the intended implementation of the project was not realised. For another project, significant staff turnover rendered assessment of activities impossible. In other circumstances, Aboriginal and Torres Strait Islander staff were employed but faced challenges within institutions, whether around their role, receiving renumeration, or encountering racism. It is critical that renal services — and the Australian health system generally — learn from these projects. Further development of Aboriginal and Torres Strait Islander roles and how they work with, and are supported by, health systems is essential.26 Most projects also suffered from workforce time pressures, with some finding assessment and reporting burdensome in addition to normal work. This is a common issue to all project‐based work in the health care system, where administrative support is often lacking.27,28,29 As further models are implemented, developing support teams around the delivery and evaluation of care would be beneficial. NIKTT projects found that local management and local answers to complex difficulties were vital to maintain transplant accessibility and project growth.30 A common element to all projects was delivery of the intervention closer to home, especially in regional areas. It is a priority, therefore, that we continue to develop and resource regional centres that can consistently deliver local innovations.31 Conclusion Achieving equity in kidney transplantation is a complex problem that continues to require distinctive solutions across multiple levels of service delivery. Providing workup assessments on Country, employing Aboriginal and Torres Strait Islander people as PNs, and investing in the transplant workforce are key enablers to improving waitlisting, as is the development of culturally and locally relevant education. The sustained resourcing of such models of care, alongside workforce support and integration, could substantially change disparities in waitlisting Australia‐wide. Box – Barriers to kidney transplantation for Aboriginal and Torres Strait Islander peoples in Australia5 Sociocultural Communication divides between patients and clinical staff Institutional racism experienced throughout the health care system, including a lack of understanding about the cultural elements of decision making, family commitments, and community obligations Culturally inappropriate educational materials Limited availability of appropriate interpreters Misinformed or culturally unaware health professionals Geographic Living in rural and remote communities not regularly serviced by transplant assessment teams Living in communities where access to dialysis facilities is poor The need to travel large distances to tertiary hospitals for follow‐up appointments Numerous trips off Country to attend workup tests Logistic and time‐consuming problems that arise from having to complete multiple trips to urban areas, including arranging transport, accommodation and bookings Biomedical A high burden of comorbidities such as diabetes, smoking and alcohol‐related illnesses, high body mass index, and cerebrovascular and cardiovascular diseases Frailty Persistent infection and malignancy

Katie Cundale · Stephen P McDonald · Ashley Irish · Matthew D Jose · Jillian Diack · Matilda D'Antoine · Kelli J Owen · Jaquelyne T Hughes

Inequities persist for Aboriginal and Torres Strait Islander people accessing health services in Australia, as evidenced by kidney health outcomes and the consistently lower rate of access to kidney transplantation experienced by Aboriginal and Torres Strait Islander people.1 The Australian Government has endeavoured to address this persisting inequity in access to kidney transplantation by establishing the National Indigenous Kidney Transplantation Taskforce (NIKTT), and tasking them to evaluate cultural bias interventions in Australia, with a focus on kidney services. The NIKTT's objective was to develop recommendations for best practice care and support that would enable health services to provide more culturally safe care for Aboriginal and Torres Strait Islander people. In this article, we highlight the main findings and recommendations from the Cultural bias Indigenous kidney care and kidney transplantation report.2 We reflect on the resulting recommendations and highlight key elements that the NIKTT anticipates could substantially improve the cultural safety of kidney care for Aboriginal and Torres Strait Islander people across Australia. Background to the report Racism continues to act as a barrier to accessing and receiving appropriate health care for Aboriginal and Torres Strait Islander people in Australia.3,4,5,6 Consumers accessing kidney services have continually stressed the importance of improving the cultural safety of care.7,8,9,10 The Australian Health Practitioner Regulatory Authority released its cultural safety definition and strategy in 2022, defining culturally safe practice as the “ongoing critical reflection of health practitioner knowledge, skills, attitudes, practising behaviours and power differentials in delivering safe, accessible and responsive healthcare free of racism”.11 For the purposes of this work, cultural bias is therefore defined as any mechanism, action or inaction — from health professionals, organisations and systems – that contributes to disparate treatment, treatment outcomes, or an unsafe experience of health care for Aboriginal and Torres Strait Islander people. To identify and evaluate what works best in addressing cultural bias in Australia, an NIKTT cultural bias working group was established. This group defined the scope and parameters of the review and evaluation, and approved the final recommendations. Based on advice from this working group, the NIKTT commissioned the Lowitja Institute, a renowned Aboriginal Community Controlled Research Organisation, to undertake the review in recognition of the need for it to be guided by Aboriginal and/or Torres Strait Islander researchers and include perspectives outside of nephrology. The objective of the review was to understand which interventions have been utilised to address cultural bias in Australian kidney care settings. Early literature searches identified severely limited available publications. The working group and review authors therefore co‐designed a three‐part approach that included: an assessment of initiatives that had been formally evaluated across kidney health and wider health care settings, which were published in the peer‐reviewed literature; a review of kidney health‐specific grey literature; and the inclusion of perspectives of Aboriginal and Torres Strait patients and kidney health care professionals through national consultations being undertaken by the NIKTT at the same time. The Cultural Bias Report was submitted to and approved by the Commonwealth Government in early 2022, and has since been disseminated and made public by the NIKTT.2 This work, developed during 2019–2021, also informed the Recommendations for culturally safe kidney care in First Nations Australians.12 The Cultural Bias Report, as well as a policy brief and translations of the recommendations into language more suitable for patients and communities, can be found on the NIKTT website.13 Further details of the report planning process can also be found in the NIKTT final report.14 Report findings The Cultural Bias Report identified that there were limited formally evaluated and published initiatives that specifically addressed cultural bias in kidney transplantation or dialysis settings. A range of evaluated initiatives were identified across other health care settings, and a number of small scale initiatives were identified within kidney care settings that were not published in peer‐reviewed journals. The report authors grouped the evidence, and consequent recommendations, into four domains for action (Box 1). These domains provide a framework through which services, organisations, and governments could address cultural bias by ensuring culturally safe and equitable care is made available to Aboriginal and Torres Strait Islander people. The first domain — Inclusion of Aboriginal and Torres Strait Islander people — identifies the necessity of privileging15 the voices and experiences of Aboriginal and Torres Strait Islander people as fundamental to effective, culturally safe interventions. Evidence found that reference groups, peer navigators, and Aboriginal and Torres Strait Islander health professionals were safe channels through which patients could provide feedback, without fear of reprisal. The second domain — Workforce — emphasises the need to focus on the roles, support, abilities and training of both the Aboriginal and Torres Strait Islander and the non‐Indigenous workforce. Evidence in this domain found that successful initiatives valued the mastery of cultural skills, knowledge and relational networks of Aboriginal and Torres Strait Islander staff who are health professionals and bring a specific scope of practice through their specialised perspectives. Domain three — Kidney health and kidney transplantation service delivery and models of care — highlights the importance of holistic continuity of care for clients and families to improve safety and outcomes. Addressing overall wellbeing and the specific socio‐economic situation and needs of Aboriginal and Torres Strait Islander clients, particularly transport and accommodation, were seen as critical. Domain four — Structures and policies — outlines the importance of institutional commitment and how national guidelines, policies and strategies are necessary to ensure that change is implemented, monitored, and followed through upon. Embedded evaluation, as well as continuous quality improvement through ongoing cycles of reflection and feedback from patients, were identified as important for improving service delivery and cultural safety. The report's domains and recommendations are listed in Box 2, mapped against the relevant National Safety and Quality Health Service (NSQHS) Standard that each relates to and addresses.16 Applying these recommendations to the NSQHS Standards illustrates how integrating the framework can create and monitor better and safer services. Recommendations for applying culturally safe (and unbiased) practice in nephrology The NIKTT convened a half‐day Cultural Bias Workshop in late 2021 to discuss the review's findings, the report, and its implications. Consumers, carers and members of the taskforce were invited to attend in person or online. Over 25 attendees joined, including Aboriginal and Torres Strait Islander people who were kidney transplant patients and health professionals, as well as non‐First Nations people who identified as transplantation coordinators, nephrologists, researchers, and other clinical and policy professionals. When reviewing the 14 recommendations listed within the report, the NIKTT and the workshop participants specifically recommended that five should be enacted immediately as essential steps towards effectively addressing cultural bias in kidney health settings. These actions are tangible, realistic steps that renal and transplantation units should implement to better ensure the cultural safety of services: Establish Indigenous Reference Groups in every transplantation unit. Support and increase the Aboriginal and Torres Strait Islander kidney health workforce. Establish and fund sustainable kidney patient navigator/peer support roles. Implement and evaluate comprehensive and ongoing cultural safety training programs. Fund, design, implement and evaluate tailored models of care. Moving forward with culturally safe care For clinicians and services, a comprehensive and standardised way to identify and track cultural safety, or the lack of cultural bias, is an essential step in progressing this work, but it needs well understood measurements. The report's four domains for action could be used by renal and transplant units to undertake an initial needs analysis of services, which could then be followed by specific resources to support the health unit and patient community to move towards equitable health care practice — as guided by specific recommendations. To best support kidney clinical services to apply this approach, the domains for action have been reframed in the form of sample questions that can be used by health services to prospectively evaluate the intent and commitment of delivered care. Box 3 provides an example of questions that have been informed by the work of the taskforce to provide unbiased care. The dearth of published research focusing on cultural safety or cultural bias in kidney health settings illustrates a gap in prioritisation within both research and practice. Health care services that work with Aboriginal and Torres Strait Islander people with kidney failure need to promote implementation and reporting of programs and research that address cultural bias and institutional racism. The creation of an archive of intervention outcomes that improve access to, and outcomes from, kidney transplantation would be an important advancement for patients. The NIKTT believes that further studies must concentrate on research and initiatives that identify and demonstrate best practices to reduce cultural bias, so that government, service and stakeholder investment can systematically implement evidence‐based recommendations and actions. Consumer and community engagement, tailored models of care (including patient support roles), improved workforce access to cultural safety training, and an empowered kidney workforce are tangible actions that federal, state and local organisations can implement now. By affirming the recommendations and domains for action discussed here, bodies such as the Australian Health Practitioner Regulatory Authority and the Australian Commission on Safety and Quality in Health Care could drive practice change throughout both nephrology and other health fields by setting standards and exemplifying conduct against which equitable service delivery could be measured. Box 1 – The Cultural Bias Report framework of four domains and their sub‐domains2 Domain Sub‐domains Inclusion of Aboriginal and Torres Strait Islander people Inclusion of family in care and decision making Indigenous governance, community consultations, reference groups Patient perspectives and feedback Workforce Indigenous workforce Knowledge and skills of all workforce Two‐way learning Service delivery and models of care Advocacy Case management, referral and follow‐up Collaboration Communication, understanding, trust and transparency Continuity of care and carer Cultural safety and responsiveness Flexibility Health promotion, education, prevention Responding to holistic health, wellbeing and socio‐economic needs Structures and policies Organisational governance, commitment, leadership and management Policies, guidelines and standards Physical environment Resources and funding Box 2 – Domains and recommendations from the Cultural Bias Report,2 mapped to corresponding National Safety and Quality Health Service (NSQHS) Standards16 NSQHS Standard Domain Recommendation Clinical governance Partnering with consumers Comprehensive care Communicating for safety Inclusion of Aboriginal and Torres Strait Islander people Establish Indigenous Reference Groups in transplantation units across Australia to co‐design culturally safe models of care and feedback mechanisms ✓ ✓ ✓ ✓ Increase the number of Aboriginal and Torres Strait Islander patients, families and health professionals on kidney health advisory boards and steering groups, especially in transplantation units ✓ ✓ Workforce Increase and support Aboriginal and Torres Strait Islander people to work as clinicians, transplant coordinators, and case managers in kidney health ✓ ✓ ✓ ✓ Employ Aboriginal and Torres Strait Islander people with lived experience of kidney disease in patient navigator and peer‐support roles, and ensure these are funded long term ✓ ✓ ✓ ✓ Deliver cultural safety training for all staff in transplantation and kidney health services ✓ ✓ ✓ Service delivery and models of care Co‐design new, holistic, culturally safe, and responsive models of kidney care and transplantation that actively involve patients and families in decision making; address inequalities and access issues; respect cultural priorities and obligations; and include traditional healers and a wider range of health professionals, healing, and support services ✓ ✓ ✓ ✓ Increase the use of telemedicine and videoconferencing, with Aboriginal health professional and interpreter support ✓ ✓ ✓ ✓ Improve access to, support of, and payment for interpreters ✓ ✓ ✓ Involve Aboriginal and Torres Strait Islander people in co‐developing new health promotion and health education resources and approaches to kidney transplantation ✓ ✓ ✓ Structures and policies Review and update quality improvement and feedback processes, policies, protocols, and guidelines in transplant units and kidney health services ✓ ✓ Use an institutional racism audit tool to assess levels of racism in transplantation units and kidney health services ✓ ✓ Develop and implement new clinical guidelines for Aboriginal and Torres Strait Islander kidney care and transplantation, and evaluate how effective they are in increasing access to kidney transplantation ✓ ✓ ✓ ✓ Adequately fund the implementation and evaluation of cultural bias recommendations ✓ ✓ Fund the National Indigenous Kidney Transplantation Taskforce to assess how each transplant unit scores in relation to cultural bias, and monitor improvements over time if/when recommendations are implemented ✓ ✓ Box 3 – Sample questions for applying the Cultural Bias Report2 domains for action Domain Questions for service delivery Inclusion of Aboriginal and Torres Strait Islander people Is there evidence of Aboriginal and Torres Strait Islander people being included in the governance, decision making, feedback loops, and leadership of clinical practice and health service delivery when services work with Aboriginal and Torres Strait Islander people? How are services confirming that these representatives are full and effective in their contribution to culturally safe delivery of health care? Workforce Are Aboriginal and Torres Strait Islander people represented throughout the health workforce? What is the evidence of worker support to practice in a health care system free of racism? How are they supported and resourced to provide adequate cultural safety for Aboriginal and Torres Strait Islander patients? Service delivery and models of care Which indicators demonstrate service delivery has been specifically created, or modified from existing practices, to ensure cultural safety for Aboriginal and Torres Strait Islander people who are at work or are recipients of care? What is the selection and review process and how is the service enabling implementation of recommendations? What are the timeframe, review, complaints and resolution processes that alert the service to successful implementation or persisting issues? Structures and policies Which structures, policies and processes are in place to ensure that auditing, accountability and responsibility are applied to providing culturally safe kidney care for Aboriginal and Torres Strait Islander people?

Jaquelyne T Hughes · Kelli J Owen · Janet Kelly · Katie Cundale · Sandawana William Majoni · Matilda D'Antoine · Stephen P McDonald

Consumer engagement is invaluable for informing, and thus supporting, improvements in the quality of health care delivery by services. Indeed, consumer engagement in health care has become an essential paradigm for Australian policy over the past 20 years, with one of the eight National Safety and Quality Health Service Standards focusing entirely on partnering with consumers.1 For Aboriginal and Torres Strait Islander peoples living with kidney disease, several consumer engagement activities were enabled by support from the National Indigenous Kidney Transplantation Taskforce (NIKTT) and other partners in recent years.2,3,4,5 These consultations allowed communities around the country to provide feedback, opinions, and solutions to kidney care challenges. Partnering with patients to overcome complex transplantation challenges is crucial and must be done with recognition and acknowledgement of the ways of knowing, being and doing that exist for Aboriginal and Torres Strait Islander peoples.6 For Aboriginal and Torres Strait Islander peoples living with kidney disease and after transplantation, the health system must embed true partnership, engagement and, most importantly, real change from existing verbal feedback that is backed by evidence. Our health systems need to be empowered to embrace, accept and work with (and not against) Indigenous knowledges.7,8,9 The barriers that Aboriginal and Torres Strait Islander peoples face when contending with renal services are numerous, as discussed elsewhere in this supplement. The kidney transplant pathway has aptly been described by one Aboriginal patient as “fragmented, confusing, isolating, and burdensome”.10 In order to address some of these barriers, through authentic engagement with consumers, the NIKTT catalysed the establishment of Indigenous Reference Groups (IRGs) within transplantation units around Australia. Five transplantation units were initially selected to host these IRGs — these represented the hospitals that serve the largest proportion of Aboriginal and Torres Strait Islander peoples on kidney replacement therapy: the Royal Adelaide Hospital (RAH) in South Australia, Princess Alexandra Hospital in Queensland, Westmead Hospital and the Royal Prince Alfred Hospital in New South Wales, and Sir Charles Gairdner Hospital in Western Australia. In this Perspective article, we describe the establishment of the RAH IRG to demonstrate how consumer engagement can deliver effective, culturally safe change. Doing it right: establishing an effective Indigenous Reference Group in Adelaide At the RAH, Aboriginal and Torres Strait Islander patients come from South Australia, the Northern Territory and western New South Wales to receive kidney transplantation care. This unit therefore provides care to people from many different Nations, each with their own languages, practices and ceremonies, and each with a distinct history of colonisation and health care experiences. These patients and their families travel enormous distances to receive care in a system that was created by, and predominantly for, an English‐speaking, Western‐orientated population. Although located on Kaurna Country, an out‐of‐the‐way wall is the only welcome in Language that consumers coming to the RAH experience. Due to the complexity of care for patients on kidney replacement therapies, especially those undertaking or having received a transplantation, a specific IRG was established to help patients’ voices systematically report on barriers to care from within the hospital system. To best achieve this, the NIKTT first established a Consumer and Community Engagement (CCE) working group and a dedicated CCE officer role to guarantee consumers were not only consulted but, more importantly, were leading the process of improving access to transplantation. The RAH IRG originally consisted of 20 patients, but as members unfortunately died, membership was subsequently opened to carers and family members. Seven key design elements (Box 1) for the IRG were developed throughout the establishment of the RAH group. Reflective practices11 were used so that what worked, and what did not work, was continuously discussed and allowed to guide future meetings and partnership growth. From the experience of establishing this reference group at the RAH, the CCE working group found that specific enablers paved the way for the IRG's successful engagement, integration and activism. Creating a Blak space Aboriginal and Torres Strait Islander voices were privileged by the creation of a safe, decolonised space through which the IRG could communicate with the clinical world. As no non‐Aboriginal people attended the IRG meetings, the space was seen as a wholly “Blak space”,12 where only Aboriginal and/or Torres Strait Islander people were invited to participate, lead and govern meetings. The IRG was positioned as a catalyst to forming trusting relationships between the patients and the hospital staff, as two‐way communication and Aboriginal and Torres Strait Islander‐led change were actively embraced at a local level. Reflective practices were employed to ensure meetings were examined and improved upon, a practice that reflects Aboriginal ways of knowing, being and doing by valuing the acts of deep listening and reflection.12 Questions such as “have the communities’ needs been heard and met?”, “what worked for us and what did not?”, and “how can we do it better next time?” were asked after each IRG meeting. This reflection and real‐time feedback allowed for each meeting to advance and develop based on feedback from within the Blak space. Engaging clinicians Clinical support and renal unit “buy‐in” were instrumental in helping to gain traction within the hospital system, specifically formalised first through a letter of support from the head of unit and then through another letter committing to undertake change based on the IRG recommendations. The CCE officer and another member of the IRG formally presented these recommendations to the transplant management meeting in the form of a message stick and a written letter. Without the support of doctors, nurses, coordinators and administrators, the success of the IRG would have been limited: non‐Aboriginal allies throughout the hospital system allowed for doors to be metaphorically opened and lines of communication begun. Box 2 illustrates this process for change and integration. Leading from within Aboriginal leads, and strong community connections, allowed for a resilient network to be built and maintained. Having Aboriginal kidney patients drive meeting times, agendas and outputs allowed for powerful momentum within the group to carry its message forward. In addition, having an Aboriginal person lead from within the renal unit was seen as vital to drive the project and maintain momentum. Early outcomes from the Adelaide Indigenous Reference Group Real practice change has occurred within the first year of the RAH IRG's existence, due to the strong relationships and trust built between IRG members and clinical staff. These changes include: Smoking (organ cleansing) Ceremonies are available on hospital grounds. In June 2022, the first kidney transplant Smoking Ceremony was held to pay respect to the organ donor and their family, while connecting the recipient and organ to the present. By facilitating such ceremonies, the RAH has enabled a holistic view of healing, delivering a more culturally sensitive system of care.13 A new cultural safety training course is being developed by Aboriginal kidney patients. More Aboriginal health practitioners are being employed in the renal unit. Non‐Aboriginal staff have expressed gratitude for the opportunity to better understand cultural protocols to facilitate culturally sensitive, and therefore safer, care. A formal evaluation of this group, and the impact and outcomes it has on the transplantation and renal unit, has been recommended by the CCE and IRG members. What could hold us back Although the establishment of the RAH IRG has been successful and provided learnings for NIKTT, there are general challenges for establishing and sustaining IRGs. Funding IRGs need financial support for both establishment and continued engagement. Costs are as low as $500 per meeting to cover sitting fees, catering and venue. Secured funding for the sustained support of IRGs is an easy obstacle to overcome once the benefits are considered. As units create new Aboriginal and/or Torres Strait Islander staff positions within kidney teams, more facilitators become available to ensure the cultural safety and continuity of each group. Powerful partnerships Although fundamentally enablers, trusting partnerships can also be obstacles if not continuously considered and acted upon. Aboriginal and Torres Strait Islander peoples have experienced innumerable broken promises over the hundreds of years of colonial subjugation. It therefore comes as no surprise that further broken promises or commitments unhonoured lead to frustration, mistrust and, ultimately, lack of engagement from Aboriginal patients. Taking time Finally, an important consideration for both the creation of and continued engagement with patient reference groups is time. It takes time to develop the trust and relationships that must occur for IRGs to be effective, and it takes time to implement the cultural considerations of deep listening and reflection. Follow‐up is crucial to this process: anything raised in a meeting, reflected upon after a meeting, or brought up outside of a meeting by members or hospital staff must be recorded and revisited until everyone feels the issue has been managed. These ways of working take up dedicated physical and mental time — a notion that may be antithetical to some hospital processes. Talking to take action The benefits of establishing IRGs, from ensuring voices are heard to creating trusting relationships, far outweigh the challenges to implementation. Transplantation units around Australia must prioritise and ensure the sustainable funding of IRGs for them to become embedded within the system. While we continue to grapple with an inequitable health system, new models of care are needed that best serve disparate consumers. Establishing IRGs within hospitals is one important way to enact positive, meaningful and active consumer‐led change. Box 1 – Essential design elements for the creation of a successful Indigenous Reference Group (IRG) Transplantation unit directors and heads of units were consulted before the establishment of the IRG and asked to clearly commit, in writing, to engaging with IRG suggestions on an ongoing basis. This was essential for engaging patients so they could trust that their voices would lead to meaningful change, rather than be sought, collated, and then ignored. The Consumer and Community Engagement (CCE) officer identified local clinical leaders and staff in the transplant unit that would be involved with the delivery of care and system change suggested by the IRG, to distinguish advocates and allies. The CCE officer used relational networks, clinical patient contacts, and community connections to identify potential IRG members. A “Blak space” was created wherein IRG meetings were only led by, and involved only, Aboriginal and Torres Strait Islander peoples. This space was deliberately set up to exist both physically and strategically within the transplantation hospital. Crucially, a terms of reference document was created that outlined the way in which the IRG worked together and in partnership with the hospital. The IRG then created a list of priorities that provided a positive framework for the unit specifically, and the hospital generally, to improve the cultural safety. These priorities were presented to the head of unit and the transplantation team in the form of a report and a specially commissioned message stick. Meeting minutes were made available to the transplantation team after each meeting. All IRG members were compensated for their time and the expertise that they shared. Finally, the IRG was brought together every three months using the considerations of time, deep listening, and reflection. Box 2 – The design and process of the Royal Adelaide Hospital's Indigenous Reference Group (IRG)* NIKTT = National Indigenous Kidney Transplantation Taskforce. * This workflow illustrates the ongoing flow of consultation and knowledge exchange allowed both for patients to feel more heard and for clinicians to gain a better understanding of cultural practices and protocols.

Kelli J Owen · Katie Cundale · Jaquelyne T Hughes · Stephen P McDonald · Matilda D'Antoine · Shilpanjali Jesudason

Lasting improvement in access to, and outcomes of, kidney transplantation will take sustained focus and coordinated effort. Further gains in transplantation access and outcomes are immediately available with directed attention on racism, cultural safety, equity and Aboriginal and Torres Strait Islander‐led change by our kidney communities and change makers. Transforming our entrenched systems will not be easy, but it must be done. In this Perspective article, we focus not on re‐expressing the trauma of exclusion and racism experienced by Aboriginal and Torres Strait Islander people in renal care, but instead focus the discussion on what must be done to systemically change care delivery going forwards. We reflect on some of the underlying principles that will ensure true equity and health sovereignty are realised as we continue to improve access to, and outcomes of, kidney transplantation for Aboriginal and Torres Strait Islander people. These changes, supported by the generosity and commitment of Aboriginal and Torres Strait Islander people, allied partners and many others, must be grounded in Aboriginal and Torres Strait Islander sovereignty and leadership. Although there have been early improvements in access to waitlisting and transplantation, we look at which next steps are needed for continued and sustained change. Change through focus A focused, coordinated national effort to increase access to kidney transplantation for Aboriginal and Torres Strait Islander people has been intentionally resourced by the Australian Government over the past five years: first, with the funding of an expert panel to review extant barriers to transplantation,1 and then by the establishment of the National Indigenous Kidney Transplantation Taskforce (NIKTT) to address specific barriers.2 The timing of the review and the action of the national Taskforce coincide with an improvement in the rates of both transplantation and active waitlisting for Aboriginal and Torres Strait Islander people around Australia.3 Alongside quantitative evidence for improvements in transplantation and waitlisting rates,4,5 the NIKTT has found qualitative evidence around the various enablers and barriers to transplantation access for Aboriginal and Torres Strait Islander people in Australia, detailed throughout this supplement. Combining these findings, as well as a position statement on transplantation equity6 that was endorsed by many community and clinical members of the Taskforce and larger network, the NIKTT identified three key areas for action, and associated recommendations, to continue to improve access to kidney transplantation (Box). In this final Perspective article, we discuss how we, as a health care community, can continue to improve access to waitlisting and transplantation. Service redesign The complexity of changing service delivery within the current Australian health care system cannot be understated. Among renal units, staffing pressures and a lack of available dialysis chairs have created situations where delivery of even basic renal care is difficult in some situations. The challenge (and its opportunity) for the Australian health system lies in addressing multiple aims: improving access to kidney transplantation and dealing with limited haemodialysis capacity and the need to implement prevention programs, all while working within a resource‐limited system.7 These aims cannot be mutually exclusive priorities if we are to provide care to all who need it. Dealing with issues around transplantation access will involve sustained institutional and unit‐level practice changes. Increasing the Aboriginal and Torres Strait Islander kidney health workforce (discussed below) is a first step. Other changes, such as the establishment and maintenance of Indigenous Reference Groups or Patient Navigator programs, are tangible steps renal and transplantation units can take to directly involve patients and their families in the creation of safe care pathways. The benefits to patients and services are considerably higher than the modest resourcing required to sustain these activities once initiated, so they must be included in renal unit budget planning. Similarly, although coordination of care requires complex interactions between many health care actors, the benefits and value‐added of collaboration across and within institutional boundaries strengthen continuity of care and coordinated practice. These directly speak to what Aboriginal and Torres Strait Islander patients have called for and are integral facets of chronic and complex care pathways. As recommended by the NIKTT, outreach assessment clinics in rural and remote Australia are illustrative of how collaborative working arrangements between transplantation units and local primary health teams can achieve a greater magnitude of benefit when they are able to access, integrate and capitalise on ground‐level knowledge and coordination capabilities.8 Australia is presently struggling to deliver health care, particularly with nursing staff shortages9 and especially within renal services in regional and remote areas.10 Increasing the Aboriginal and Torres Strait Islander health workforce at all levels will be a fundamental part of the solution to this, as well as transplantation accessibility more generally. Strategies for immediate action include creating bespoke roles for Aboriginal Health Practitioners, exploring alternatives to dialysis nursing from within the community, and investing in culturally relevant positions such as interpreters or patient navigators. The NIKTT consistently found across pilot projects that Aboriginal Health Workers or Practitioners offered immeasurable benefits to renal services by leading culturally safe access to, and provision of, care and a crucial interdisciplinary team approach to care. Implementing this at a jurisdictional level will require a coordinated approach that includes design of appropriate scope of roles, role delegation, integration within models of care, creation and accreditation of appropriate training courses, and, ideally, a national framework that recognises expertise and training in this area. Maintained leadership, coordination and governance led by Aboriginal and Torres Strait Islander people A fundamental tenet of high quality care is a patient‐centred approach,11 yet, until recently, there have been very few mechanisms for patient engagement in service design, especially in renal services caring for Aboriginal and Torres Strait Islander people. Over the past two decades, activity‐based funding, and thus economic efficiency, have driven health care service models. These centre the needs of care providers rather than outcomes‐based models, which centre the needs, wants or particularities of patient‐users of services. In kidney transplantation settings that serve Aboriginal and Torres Strait Islander people, the opportunities for patient voices to influence the design of services and care models have been minimal.12,13 Shared responsibility for leadership and governance by health care users and health care providers was an important priority of the NIKTT community network, as evidenced through Indigenous Reference Groups.14 Even though the NIKTT has catalysed the formation of these bodies in several regions, ongoing support must come from the jurisdictions and health services involved. Although individual kidney transplant services are provided by state‐ and territory‐run hospitals, substantial elements of policy and practice are driven at a national level. Issues such as the acceptance criteria for waitlisting and the algorithms for kidney allocation are determined by national bodies, which have often lacked representation from Aboriginal and Torres Strait Islander communities. These processes that provide care for Aboriginal and Torres Strait Islander people, yet exclude Aboriginal and Torres Strait Islander people from making decisions or providing input, recolonise, subjugate and must be avoided.15 Similarly, we must continue to question processes around data collection and reporting. How are data sovereignty16 and governance maintained? Are we underestimating the number of Aboriginal and Torres Strait Islander people within registry datasets without self‐identification being the norm?17 At both national and local levels, we must ensure that Aboriginal and Torres Strait Islander leadership guides discussions about how we maintain, develop and use data going forward. The NIKTT strongly recommends that a national network or body be established, representing Aboriginal and Torres Strait Islander people living with kidney disease, failure and transplantation. Consumers, community members, and clinical advocates have called for such a body6 that centralises and coordinates efforts to improve the lives of people with kidney problems — from prevention through to post‐transplant care — allowing us to reduce duplicated efforts, build on the strength of networks, and share resources and knowledge for the betterment of communities across Australia. Health sovereignty will not be established within Australia unless Aboriginal and Torres Strait Islander people lead health system change. Research and evaluation to investigate additional barriers and alternative approaches to care Despite the many challenges to ongoing equity and change, it is broadly recognised that there is a strong and growing momentum for lasting improvement. This reflects the strength of actors calling for change, the political and clinical will to improve health outcomes for Aboriginal and Torres Strait Islander people, and the demonstration of effective interventions. The recommendations here are just the next steps. Undoubtedly, there will be other barriers and issues identified that need to be managed, alongside modifications to programs. Learnings from both successful and less‐than‐successful projects are critical. Ideally, current systems will evolve into learning‐health systems that are driven by Aboriginal and Torres Strait Islander people's priorities; this is likely to be an iterative process, creating the need for national coordination and facilitation of discussions and advocacy. As revealed throughout the work of the NIKTT, barriers such as obesity, treatment uptake, and systemic miscommunication and racism continue to reduce access to waitlisting. Initiatives that are led and designed by and with Aboriginal and Torres Strait Islander communities should be evaluated across Australia. Additional aspects of the transplantation pathway, such as post‐transplant care and paediatric transplantation, that were not within the scope of this iteration of the NIKTT's work must also be researched and initiatives evaluated. Next steps In March 2023, the NIKTT Secretariat submitted a funding proposal for $4.8 million over four years to the Commonwealth Department of Health and Aged Care. This proposal addressed the three key areas for action and the recommendations therein, asking for funding to support: the resourcing of a continued Secretariat to maintain collaborations; the development of a data dashboard to support monitoring and reporting on equity progress; the development of a national body that represents Aboriginal and Torres Strait Islander people living with all stages of kidney disease, failure and transplantation; and the resourcing of additional sponsorship opportunities for local service delivery change based on outstanding barriers and additional aspects of the transplant pathway. How inequalities are addressed and actioned in the kidney transplant sector is very relevant for the broader health system. The type of complex care pathways — involving multiple care providers in different institutions with different governance and funding streams — is an inevitable part of the multidisciplinary management of chronic diseases. There will be many lessons from the transplant sector that can be taken up throughout services that care for people with chronic kidney disease, other chronic health conditions, and, more broadly, for Aboriginal and Torres Strait Islander people across Australia. Box – Key areas for action, and their associated recommendations, identified by the National Indigenous Kidney Transplantation Taskforce Key area for action Detailed recommendations Service redesign Jurisdictions must sustainably fund the following: Outreach assessment clinics: clinics should be resourced to provide multidisciplinary team visits to rural and remote locations. Funding should include the provision of a full‐time transplant coordinator role and clinics should include educational sessions for staff and patients alongside clinic visits. Indigenous Reference Groups (IRGs): all transplant hospitals should resource and implement unit‐based IRGs alongside mechanisms for reporting and workflow integration. Groups should be led by Aboriginal and Torres Strait Islander kidney patients and/or Aboriginal and Torres Strait Islander renal health workers. Increased Aboriginal and Torres Strait Islander renal health workforce: identified renal health roles at all levels, including (but not limited to) patient navigators and transplant coordinators, should be developed and sustainably resourced at renal units and transplant hospitals that serve Aboriginal and Torres Strait Islander patients. These roles must be embedded and supported within renal and transplantation units. Maintained leadership, coordination, and governance led by Aboriginal and Torres Strait Islander people Coordinated efforts are essential to identify issues, catalyse activity, and maintain profile and focus on transplantation. A national Secretariat, guided by Aboriginal and Torres Strait Islander people, would provide leadership, collaboration, monitoring and reporting and should be resourced to continue national coordination of transplantation equity work. This group should be responsible for the implementation of the following: ‣ Ongoing monitoring: progress on improving waitlisting numbers, kidneys transplanted, and post‐transplant outcomes should be consistently monitored through the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry. This monitoring should include the development and implementation of an annual scorecard for renal units. ‣ Maintaining focus and engagement: a coordinated network should be maintained to ensure attention remains on transplantation access and outcomes until significantly improved. Such maintenance of a network should include an annual gathering, consistent community engagement, sustained online resource portal, and conference attendance. ‣ Developing a proposal for a National Aboriginal and Torres Strait Islander Body: a coordinated, collaborative approach should be implemented to develop a proposal for a sustainable national body that represents the holistic journey of Aboriginal and Torres Strait Islander people with kidney disease, inclusive of all modalities including transplantation. Secretariat support should include the development of partnerships, governance, terms of reference, and key objectives and deliverables. Research and evaluation Funding should be offered to support the investigation of solutions for further drivers of inequity. Research into, and implementation and evaluation of, initiatives that address additional drivers of inequity should be nationally resourced and coordinated to understand best practices. Additional barriers: further barriers to transplantation equity, including overweight/obesity, treatment uptake, and reversible health issues, should be researched and best practices identified to address these barriers across rural and remote regions. Design initiatives across the transplantation pathway: research into and implementation of solutions to additional transplantation pathway aspects, with Aboriginal and Torres Strait Islander people, should be resourced, including post‐transplant care, paediatric transplantation, culturally tailored transplant education, and donation.

Jaquelyne T Hughes · Katie Cundale · Angela Webster · Kelli J Owen · Stephen P McDonald

Shyan Lii Goh

Rural communities across Australia face an ongoing shortage of doctors, which reduces access to care and leads to poorer health outcomes for people living in rural areas. Significant undersupply exists, particularly in rural general practice, priority-need generalist specialties and rural generalism.1,2 The coronavirus disease 2019 (COVID-19) pandemic exacerbated vacancies as immigration of international medical graduates came to a standstill and interstate movement of rural locum doctors reduced. The recently released National Medical Workforce Strategy emphasises the need to grow a workforce of our own that is fit for purpose, to deliver culturally safe and context-specific medical services to all Australian people.1 Over the past 20 years, there have been significant political and educational initiatives to increase the rural workforce, with accompanying research investigating their outcomes.3 Eminent rural researcher Denese Playford wrote: These data collectively build a portrait of candidates who are more likely to work rurally. The portrait suggests that a very convincing set of known factors are at play: rural background, lower socio‐economic status, locally‐born, quarantined rural pathway … entering with rural intent, Medical Rural Bonded Scholarship holders.4 Selection and support of rural students, rural placement immersions and development of comprehensive rural medical programs are within the control of medical schools and supported by Australian evidence. The pathways to rural practice are rich and varied. Successful approaches tailor these elements to local resources, needs and priorities (Box 1). In this article, we describe the elements of a comprehensive approach for medical schools. The Aristotelian notion that “the whole is greater than the sum of its parts” is important and medical schools need to apply a comprehensive approach to deliver more graduates who will work rurally. Enact a social mission statement for rural service Social accountability obliges medical schools to focus their own research, service and education undertakings specifically on addressing the health needs of their local community, region and/or nation. Priority health needs are to be identified jointly by local communities, health care organisations, health professionals and the government.5 As the majority of medical schools remain centred in large metropolitan areas, it is essential that these medical schools adopt a rural social mission statement as a way of expressing their commitment. Overt commitment enables the medical schools to put in place the strategies outlined below to produce more rural doctors, and build a supportive environment to fulfil this mission.6 Select for rural workforce outcomes Increase rural background cohort numbers Graduates from rural backgrounds are more likely to work in rural practice (odds ratio, 2.6 to 3.9).7,8,9,10,11 This “rural background effect” is independent of rural clinical training, but is augmented by it.7,8,9,12 The effect endures throughout postgraduate career stages,8,13 and has been found in some studies to increase over time.14 Rural background graduates are more likely to commence in rural practice, move to rural practice and remain in rural practice.13 Since 1995, in an effort to meet equity‐of‐access goals, the Commonwealth Government has mandated that 25% of medical student Commonwealth‐supported places are allocated to students with a rural background.15 With 28% of Australians living in rural areas,16 more recently funded rural programs, such as the Murray–Darling Medical Schools Network, have higher mandated proportions of rural background places (up to 100%).17 Medical school selections traditionally use university entrance examinations, which are expensive and less easily accessed from rural areas.18 Admitting more students from a rural background has been achieved in different ways across Australia. Equity adjustments have been used by many universities, such as adjusting academic and entrance exam scores, or keeping selection methods consistent and creating specific rural quotas. Other medical programs have adopted specific rural selection tools, including written personal statements and interviews, using community members to understand candidates’ rural interests.19,20,21,22 Despite these adjustments to admissions, rural background students demonstrate the same academic outcomes in medical school as other student cohorts admitted with higher entry scores.23 Select students from higher rurality locations The Modified Monash Model (MMM) categorises the rurality of Australian communities using a scale from 1 for metropolitan to 7 for very remote.24 Including MMM2 communities (regional, population>50000) in selection targets risks displacing students from more isolated locations. Applying a sub‐quota to MMM3–MMM7 communities ensures that students from smaller communities and remote Australia enter medical school. This focus is an important step forward in rural selection. Targeting selection of MMM3–MMM7 students from a specific geographic region within a university's regional footprint is a promising emerging strategy — it is informed by evidence that rural students are more likely to return to their own or a similar rural community.12,25 Many students in rural schools, particularly those from higher rurality areas, do not see medicine as an achievable career. Geographical, financial, social and self‐efficacy barriers prevent many potential rural applicants from considering medicine. Medical schools can play a key role in leading community‐engaged recruitment and support programs for high school students and other people living in rural areas who are eligible to access graduate‐entry medical schools. The impact of these recruitment programs can increase applications from students in rural areas.26 Provide early support, not constraints Strongly coercive interventions, such as bonded medical places, are associated with comparatively lower rural retention than interventions that involve less coercion.27 Currently about 25% of all Commonwealth‐supported medical students are bonded to areas of workforce need (including rural areas) for 3 years.28 Medical student bonding arrangements have reduced over time, due to limited evidence of long term success. Bonding conveys messages at the start of medical school that rural is less attractive, and it perpetuates inappropriate deficit discourse around rural practice. The current policy initiative of reducing Higher Education Loan Program debt for rural doctors is likely to have a much more positive impact.29 Promoting this financial support to students will assist with their choices to move to and stay in rural areas, but more needs to be done to overcome financial pressures for students from disadvantaged backgrounds during medical school. Rural students are a heterogeneous group, with potentially vast differences in rurality of background, socio‐economic status, and personal agency. When available, generous scholarships targeting rural students enable those experiencing financial hardship to participate in medical training. Access to safe, student‐friendly and affordable accommodation is invaluable for student success and rural retention. University‐owned and subsidised housing allows students to transition into medical school and access clinical placements in a range of locations. Make medical training locations more accessible for rural people Few medical courses are wholly based outside of capital cities in Australia.21 In 2019, the Commonwealth Government recognised the value of comprehensive rurally based programs that are more accessible for rural students by introducing legislation to reallocate 2% of medical school Commonwealth‐supported places from urban medical schools to rural end‐to‐end programs every 3 years. This redistribution of medical school training places, which commenced in 2020, facilitated the recent establishment of medical programs in regional areas of New South Wales and Victoria.17 Before the COVID‐19 pandemic began, this redistribution of medical places to rural programs may have been enough to provide an adequate rural medical workforce. Recent significantly reduced inward immigration of international medical graduates means that this policy needs to be reviewed. An expansion of Commonwealth‐supported medical student places is required in rurally located end‐to‐end medical school programs, rather than a reliance solely on redistribution, to ensure that each state has at least one rural medical school program that provides remote or rural training from the start to the completion of the medical degree. A national collaboration could share medical education and remote teaching resources to support this initiative, with the Federation of Rural Australian Medical Educators well placed to facilitate this (https://ausframe.org/). Highlight rural medicine in medical school curricula Showcase diverse rural contexts Medical curricula and assessments shape students’ views of rural career options.30 Traditional medical school teaching is predominantly metropolitan focused and specialist led. Medical students report that denigration of both rural doctors and general practice is still commonplace in Australia.31 Attitudes which fail to recognise the expertise of generalists influence students’ career choices away from rural practice. Medical schools with strong academic engagement by rural clinicians illustrate the value of rural doctors. Integrating rural clinical cases and management plans for rural practice within the formal curriculum can reinforce positive and realistic messages about rural medicine in Australia.30 Australian medical schools with MD programs require students to undertake research, providing an opportunity for students to undertake rural projects that contribute to rural communities, which in turn can draw students to rural careers. Teach generalist ways of working As generalists, rural doctors deal with high levels of complexity and uncertainty in clinical practice. Students who are ill prepared for clinical complexity can avoid specialties that have high loads of uncertainty. Modern curricula need to prepare students explicitly for uncertainty, multimorbidity, shared decision making and communication across clinical settings. Clinical cases set in rural contexts provide opportunities to build medical students’ generalist approaches to clinical care. Having rural doctors teach core medical content will encourage a broader scope of practice for all students. In addition, medical students need to learn to work in multidisciplinary teams. Ensuring that a broad range of rural health practitioners teach medical students alongside nursing and allied health students will promote good foundations for future work practices. These changes in the curriculum will ensure all medical students have the skills for 21st century health care. Invest in rural training pathways Immerse students in a rural place Immersive rural training remains a cornerstone for producing more rural doctors. Australian rural clinical schools have provided a generation of medical students with a year or more of rural clinical experience.32 Placement types vary from traditional hospital rotations in regional centres, with arguably less rural context, to placements based in general practices in small rural communities where students interleave general practice and hospital experience, often supervised by rural generalists.33 Rural placements enable students to build connections with rural clinicians and communities. Their influence can range from cementing intent for students already interested in rural practice to changing intent of students primarily interested in metropolitan practice.9,34 Longitudinal integrated rural clinical placements demonstrate consistently excellent academic outcomes and increased rural medical workforce outcomes by up to seven times those of metropolitan medical student clinical training.8,35 These programs, when situated in small rural towns, result in graduates who are up to five times more likely to work in small rural towns.36 This workforce outcome takes time, particularly in communities that are not big enough to provide prevocational training. Many rural clinical school graduates who have to leave rural areas for their postgraduate training come back 5–10 years after graduation.37 Students who become rural doctors often spend longer than their peers being undecided about their specialty intentions, highlighting the importance of regular positive rural experiences to promote the uptake of general practice and rural practice.38 Longer duration (18–24 versus 12 months) of rural training is associated with a threefold increase in returning to practise in the same rural region after training.7,39 Incrementally stronger associations exist for longer duration, a combination of regional hospital and general practice experience, greater remoteness and multiple placements.7,10,32 Apart from duration, there may be specific place‐based effects. For example, the Rural Clinical School of Western Australia distributes rural medical workforce in a clearly geographically patterned way, with Broome acting as a bridge to the remote north of Australia.40 In Victoria, those selected from a specific region and having greater than one year of rural training in that region had a 17.4 times increased chance of working in that same rural region compared with urban background students who had completed fewer than 12 weeks of training in the region.25 In rural communities, students make an authentic contribution to the clinical care of patients.41 They are seen by local people as contributing members of the community, and these meaningful relationships shape their learning and professional identity.41 As students on full year rural placements engage in community social activities, such as participation in sport, choir or church, they develop individual informal relationships with community members. Adopting a community‐engaged approach to training also includes facilitating rural communities to engage in the selection and education of students as patient‐experts and simulated patients. Prolonged rural placement experiences trigger aspirational, intellectual and emotional responses, particularly in students who have a strong motivation to help others and who value teamwork.42 Accordingly, students are drawn in and bound to their “own” town.43 Develop medical students’ rural identity For many students choosing a rural career, this requires simultaneous choices of rural location and specialty discipline, while urban medical careers tend to be shaped first by chosen specialty and later by location of practice.38 A medical school's social and cultural context shapes who students become (eg, rural community member), not solely what they practise (ie, discipline interest).33,44 This highlights the importance of fostering rural self‐identity during medical school. Rural practice self‐efficacy is an individual's sense of self‐confidence to thrive working in rural practice.45 It correlates with medical student rural practice intent and increased remoteness of location of practice after graduation.45,46,47 Rural doctors describe their practice as involving connection with their communities, comfort with clinical uncertainties and preparedness to undertake clinical activities at the edge of their scope.48 Students on rural placements are immersed in this culture of rural medicine, see others like them in rural practice, and thereby develop rural practice self‐efficacy.45 Students’ aspirations and expectations are strongly influenced by peers. Rural health clubs at universities celebrate and support students’ interests and facilitate contact with like‐minded peers. Students who undertake a rural stream in medical school develop strong ties, before and during rural placements, with each other and with mentors.49 Extended rural placements help students build firm friendships in the student group on location and between students in other similar rural sites. In rural areas, a strong community of practice is essential for developing and sustaining clinicians who thrive.50 An apprenticeship‐style mentoring model between rural medical practitioners and rural students enables students to feel supported and trained appropriately for rural and remote practice.51 Close working relationships between learners and their rural clinical supervisors enable rural professional identity formation over time.41,52 Mentors have a key influence on graduates’ career choices and practice locations.53 The John Flynn Placement Program, which previously supported medical students to undertake extracurricular rural placements (2 weeks annually for 4 years), demonstrated positive effects of mentorship on rural practice intent.11 Value rural practitioners and rural academics The rural medical workforce is under stress. Maintaining and developing training capacity is vital for all rural programs and Australia's future rural medical workforce. Junior doctors, registrars and international medical graduates compete for limited supervisor time and clinical space. Rural clinical schools play an important role in developing educationally supportive communities of practice for rural doctors. Schools also advocate for increased resources for rural areas, including financial remuneration for teaching and research, and clinical training infrastructure in rural general practices and hospitals. With proposed expansion of rural medical training pathways at all levels, the importance of appropriate support for rural clinical teachers, to ensure high quality clinical supervision, cannot be underestimated. Rural academic positions provide career diversity in rural Australia. Rural medical programs develop and support rural doctors to have blended roles, including clinician–teacher and clinical academic. Medical schools that include rural academics in curriculum design and delivery, assessment, research projects and wider opportunities within the university can improve advancement and longevity of engagement of rural staff.54 Having rural academics in senior medical school management teams secures rural oversight of rural missions. Rural clinical schools can provide academic skills for general practitioner and specialist registrars, enabling them to complete their training rurally. Many of these registrars will stay on or come back to the rural centre that provided this academic environment.32 Facilitate rural prevocational and specialist training Developing and sustaining rural and regional postgraduate training pathways is critical for supporting doctors to stay in rural areas.55 The Commonwealth Government's regional training hubs initiative funds rural clinical schools to develop, promote and sustain intern and vocational training opportunities in rural and remote Australia. Importantly, rural clinical schools connect students and junior doctors to vertically integrated training opportunities. Through regional training hubs, medical schools are increasingly engaging with other stakeholders contributing to workforce outcomes to maximise return on government investment and collaborate to address Australia's rural workforce needs. Several specialist training programs have now adopted a rural health equity strategy which sees rural background graduates privileged in college selection processes, particularly for rural training positions.56 The Australian College of Rural and Remote Medicine has recognised the value of rural connection and has incorporated a demonstrated connection with rural communities into its selection process for all candidates.57 Evaluate and recommit to the social mission Ongoing research into medical school influences on rural career choice will continue to influence medical school policy. Small changes in admissions policies can effect significant changes in terms of rural students entering medical school. Reporting on outcomes of rural pathways within the medical course must hold medical schools to account, ensure appropriate participation of students from under‐represented rural communities, and enable continuous quality improvement of rural training pathways. Tracking rural student progress throughout the course can facilitate access to social and academic supports when required to retain these students. Finally, the Australian Health Practitioner Regulation Agency collects data on location of practice, which enables universities to track their graduates to understand the impact on the end goal — more rural doctors. The rural workforce outcomes of medical school interventions can take many years to eventuate and will remain dependent on other factors such as specialty choice, rural postgraduate training opportunities, and individual, family and partner commitments. Conclusion Rural clinical schools in Australia have demonstrated the compounding effect of rural background, generalist intent, rural immersion, rural curricula, rural practice self‐efficacy and rural identity on rural practice outcomes (Box 2). Medical schools have an obligation to direct their activities to addressing priority health needs in rural areas. Incorporating a comprehensive approach to all the elements of selection, rural immersion and rural curriculum, based on a defined social mission and geographic binding to the communities they serve, will enable students to develop their skills and careers in rural areas across Australia. Box 1 – A comprehensive approach for medical schools to develop more rural doctors Enact a social mission statement for rural service Select for rural workforce outcomes ‣ Increase rural background cohort numbers ‣ Select students from higher rurality locations ‣ Provide early support, not constraints Make medical training locations more accessible for rural people Highlight rural medicine in medical school curricula ‣ Showcase diverse rural contexts ‣ Teach generalist ways of working Invest in rural training pathways ‣ Immerse students in a rural place ‣ Develop medical students’ rural identity ‣ Value rural practitioners and rural academics Facilitate rural prevocational and specialist training Evaluate and recommit to the social mission Box 2 – University pathway to more rural doctors PG = postgraduate.

Matthew R McGrail · Zelda Doyle · Lara Fuller · Tarun Sen Gupta · Lizzi Shires · Lucie Walters