Perspectives

There is emerging evidence on peri-operative risk and retained gastric products with GLP-1 receptor agonists

Lisa M Raven · Campbell Brown · Jerry R Greenfield

Remission of type 2 diabetes is achievable with a variety of management modalities, but a combination of these may be required for maintenance of remission

Stephen N Stranks · Gary A Wittert

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

Healthy is one of the seven domains outlined in the Future Healthy Countdown 2030 framework on children and young people's health and wellbeing. The Countdown's framework draws on the Nest, a framework of wellbeing developed by the Australian Research Alliance for Children and Youth.1 In the 2021 iteration of the Nest, a new generation of child and youth voices defined healthy children and young people as those who “have their physical, mental, and emotional health needs met” and “receive appropriate health services, including preventative measures to address potential or emerging physical, emotional and mental health concerns”.1 The physical health and mental health of young Australians continue to benefit from advances in public health, modern medicine, preventive interventions such as vaccination, and a strong universal health care system. However, health inequities remain and the social determinants of health (eg, economic, commercial and structural factors) are strongly at play. Differential outcomes in children's and young people's health and wellbeing are recognised to be “unjust, unnecessary, systematic and preventable”.2 For these reasons, attempts to improve health outcomes in Australia and around the world must ensure that children and young people aged 0–24 years — particularly priority groups (eg, those who are Aboriginal and/or Torres Strait Islander and those living in low income households) — are front and centre of policy decisions aimed at reducing inequities. A broad range of indicators can be used to track the health and wellbeing of young populations. Among these, unhealthy weight (overweight and obesity) and mental health problems and disorders are leading examples of health conditions that remain unacceptably high in young populations globally. These conditions are also inequitably distributed and significant risk factors for wider diseases and disorders across the lifespan.3 Weight problems often begin in the developmental years of childhood and adolescence.4,5 Similarly, half of mental health problems emerge by 18 years of age and almost two‐thirds emerge by 24 years of age.6 Addressing these two health priorities alone would reap major benefits, including improved quality of life and reduced risk of physical disease, with implications within and across generations.3 However, intervening to prevent weight and mental health problems early in the life course necessitates accurate population and clinical data on both of these outcomes, around aspects of public health and health services, ideally from early childhood through to young adulthood (ages 0–24 years). Currently, there is no single survey system in Australia that provides these insights. However, Australia does have three survey systems that could be better integrated to regularly provide an epidemiological profile of the developmental years of Australians. These are the National Health Study (NHS; which collects data on Australians aged 2 years or older), the Australian Child and Adolescent Survey of Mental Health and Wellbeing (which collects data on 4–17‐year‐olds) and the National Study of Mental Health and Wellbeing (which collects data on Australians aged 16 years or older). Broader data capture across each survey system (including measures of social determinants and healthy development) has the potential to provide a more comprehensive and sustainable survey system for tracking the health of young populations. Furthermore, triennial administration of each survey could provide the necessary frequency for “state of the nation” reports that could enhance investments in timely, evidence‐based policy and practice decisions that are intended to improve the health of children and young people across our nation. Tracking data on overweight and obesity in young populations Current generations of children and young people are more likely to live with overweight or obesity than people at the same age in previous generations (Box 1).7 This burden is even greater among particular populations, such as those aged 5–14 years who live in the lowest socio‐economic areas (28%) or are of Aboriginal and/or Torres Strait Islander origin (38%).7 The National Obesity Strategy 2022–2032 has set a target of reducing overweight and obesity in 2–17‐year‐olds by at least 5% by 2030.8 If we are serious about reducing overweight and obesity by 5%, we need to reliably measure weight in young populations and its determinants to track progress and evaluate intervention and policy efforts. High quality and frequently collected data on body mass index (BMI; height and weight) of children and young people are available in the NHS, from in‐person objective measurements taken every three to four years (except in 2020–21 due to the coronavirus disease 2019 [COVID‐19] pandemic).9 The most recent NHS data, from 2017–18, estimated that almost one in four 5–14‐year‐old Australians (24%) and two in five 15–24‐year‐old Australians (41%) were either overweight or obese.7 In the 22 years since data were first collected, in 1995, these rates have risen by 20% for those aged 5–14 years and 46% for those aged 15–24 years (Box 1). We also need to regularly measure key risk factors and protective factors for overweight and obesity, such as physical activity, sleep and nutrition. The National Nutrition and Physical Activity Survey was completed during the period 2011–2012 and is being administered again in 2023 — a decade later.10 We suggest that more frequent data on these key factors are needed to better track the results of previous policy and intervention decisions. Beyond individual factors, we need to measure the key social, structural and commercial determinants of obesity, such as community factors. Community differences in the number of child development risk factors (eg, neighbourhood alcohol availability, school suspension, family conflict and peer bullying) predict significant increases in child weight status (eg, four or more risk factors increase the odds of a child being overweight by 50%) and other outcomes such as poor mental health.11 Broader structural factors offer policy targets that can have far reaching consequences. For example, a tax on sugary sweetened beverages alone is estimated to help reduce obesity rates at the population level by at least 2%.12 To be maximally effective in supporting evidence‐based decision making, we need to find ways of capturing macro level policy settings to help reduce obesogenic environments. Tracking data on mental health difficulties and disorders in young populations Young Australians continue to rate mental health concerns as a major challenge for their generation,13 with some groups dealing with greater burden than others (eg, LGBQTI+ and Aboriginal and Torres Strait Islander children and young people).14,15 Despite this, nationally representative and community data on mental health are collected too infrequently to develop the coherent picture of developmental years that is needed to evaluate current policies and inform approaches to mental health promotion in young populations. Like the NHS, the Australian Child and Adolescent Survey of Mental Health and Wellbeing and the National Study of Mental Health and Wellbeing have the potential to provide a continuous picture of mental health difficulties and disorders across the developmental years. These population representative mental health survey systems collect data on mental health difficulties (distress) and mental disorders (clinical conditions). In the most recent Australian Child and Adolescent Survey of Mental Health and Wellbeing, which was administered a decade ago (during the period 2013–2014), one in five 11–17‐year‐olds (20%) reported high or very high levels of psychological distress using the Kessler 10 Psychological Distress Scale (K10)16 (no equivalent data are available for children younger than 11 years). This compares to almost one in seven 4–17‐year‐olds (14%) who were classified as having a diagnosable mental disorder in the previous 12 months using the Diagnostic Interview Schedule for Children version IV (DISC‐IV).16 The absence of a more recent survey means that there is a striking gap in data for one of the most important public health and health service priorities for children and young people.17 More recent estimates of mental health difficulties are available for those aged 16 years or older in the larger national cohort (2020–2021). However, estimates of psychological distress are presented within wide age bands (16–34 years) which are not likely to represent those aged 16–24 years.18 Tighter age disaggregation is available for mental disorders (rather than mental health distress), with two in five 16–24‐year‐olds (40%) classified as having a mental disorder in the previous 12 months using the Composite International Diagnostic Interview (CIDI).19 In this age group, anxiety and affective disorders have steadily increased since national data were first collected in 1997 (Box 2), while substance use disorders have substantially declined.19,20,21 Driving responsive and accountable action for physical and mental health An important picture of physical health (overweight and obesity) and mental health (distress and disorder) in young populations can be assembled by bringing together data from the NHS, the Australian Child and Adolescent Survey of Mental Health and Wellbeing, and the National Study of Mental Health and Wellbeing. However, these important and high quality survey systems are not currently designed to “talk with each other” and thereby fail to provide a single, coherent picture of health and development in young populations at regular intervals. In addition, there is an important gap in data relating to early childhood and there is no tracking of positive health and developmental outcomes, including good general health, pro‐social behaviour and pro‐environmental behaviour. Yet, measuring the development of these positive types of behaviour has the potential to provide a crucial read on the key attitudes and behaviours that we need to nurture in young populations to ensure kinder, more peaceful societies and a healthier planet into the future. Similarly, the broader social determinants of both positive and problematic outcomes are not assessed. Beyond tracking mental health outcomes, tracking modifiable risk factors and protective factors provides specific targets for public health investments in preventive interventions in addition to health services. For this Countdown series, we suggest connecting these three important Australian survey systems to assemble an early life course national data system capable of providing continuous developmental data (up to age 24 years) on indicators of both physical and mental health. We also suggest more frequent administration of surveys (eg, triennially) with particular attention to measuring the primary social determinants of health and wellbeing and positive measures. Capitalising on the strengths of these national survey systems would address a major gap in data using expertise and infrastructure already in place within a nationally funded system. This could be done in a way that builds on existing assets (adding brief and reliable measures) but does not interfere with the core elements of these surveys which enable international comparisons. Beyond these potential data capture extensions, there is a broader question of data utilisation, particularly concerns about how effectively population data are used. One important barrier to data utilisation relates to the ease with which non‐scientific audiences can make sense of complex, multidimensional data, in ways that lead to clarity about how and when to invest for maximum impact. With this in mind, we further suggest investment in a centralised data visualisation capability that places data on a single platform, to create a single “point of truth” that can be accessed by a broad range of end users. A leading example of this has been developed by the Institute for Health Metrics and Evaluation to visualise Global Burden of Disease estimates. Summary and recommendations The current state of play is summarised in Box 3. We make the following three recommendations around strengthening existing surveillance platforms and building new surveillance capabilities to help improve physical and mental health of young Australians. 1. Track BMI and mental health difficulties and disorders in young populations every three years Continue regular ongoing reporting of physical health, including overweight and obesity (BMI) from the NHS (measured from 2 years of age onward). Integrate child, adolescent and adult mental health and wellbeing survey data to provide a single, coherent picture of the early life course (up to age 24 years). Increase the frequency of mental health survey administration to match the triennial frequency of the NHS to ensure best practice coverage of major shifts in population health. 2. Extend and enrich surveys to assess modifiable developmental determinants Lower the starting age of the Australian Child and Adolescent Survey of Mental Health and Wellbeing to match that of the NHS (from two years of age onward, parent report up to age ten years) to ensure better coverage of young children. Extend the scope of mental health assessment to include brief high level indicators of positive development, including pro‐social and pro‐environmental behaviour. Enrich monitoring with regular population reads on common, modifiable determinants (individual, relational and contextual risk factors, protective factors and structural influences). Continue to ensure oversampling of priority groups and communities to drive more equitable health outcomes based on proportionate universalism.22 3. Invest in platforms that developmentally connect and visualise data Ensure that data can be visualised easily and developmentally (eg, use fine‐grained age disaggregation and community profiles) to ensure optimal data utilisation by governments, researchers and community leaders. Ensure that data on modifiable determinants of positive and problematic health outcomes are likewise easily accessible to optimise intervention planning. Ensure that all data collected are aligned with FAIR (findable, accessible, interoperable and reusable) and Open Science principles for data access and utilisation. We believe that such improvements would build a foundation for responsive and accountable actions towards improving the physical and mental health of young Australians. Box 1 – Proportion of children, adolescents and young adults aged 5–24 years living with overweight or obesity, by birth cohort and age group (measured in 1995, 2007–08 and 2017–18) Source: Adapted from the Australian Institute of Health and Welfare.7 Box 2 – Prevalence of 12‐month mental disorders in young people aged 16–24 years, by time (1997, 2007, 2020–21)* * Original figure produced using the data sources below. Data from 1997 are not directly comparable to data from 2007 and 2020–21 because the 1997 data are based on sampling of Australians aged 18–24 years old (not 16–17 years old) using an earlier version of the Composite International Diagnostic Interview (CIDI). Source: ABS National Study of Mental Health and Wellbeing, measured in 1997, 2007 and 2020–21.19,20,21 Box 3 – Pressing issues and key indicators of physical and mental health of Australians aged 0–24 years What are the two most pressing issues where change could make a real difference by 2030 and why? • Overweight and obesity and common mental health problems (distress and clinical disorders) remain persistently high in young populations, are inequitably distributed, and have major implications both now and for future health and wellbeing. • However, we lack developmental data on these health priorities from early childhood to young adulthood (0–24 years of age), which limits evidence‐informed approaches to prevention and treatment across the early life course. • We suggest connecting three important Australian survey systems to assemble an early life course data system capable of providing continuous developmental data on indicators of both physical and mental health up to age 24 years. What are some of the key indicator measures available and what is lacking? • Key indicators: ‣ prevalence of overweight and obesity in children and young people; ‣ prevalence of mental health difficulties (distress) in children and young people; and ‣ prevalence of mental disorders in children and young people. What is lacking? ‣ data on mental health difficulties (distress) and diagnosable mental disorders in children and adolescents aged 0–24 years (the most recent survey of 4–17‐year‐olds was completed a decade ago in the period 2013–2014); ‣ data on positive development indicators (eg, pro‐social and pro‐environmental behaviour); ‣ data on common, modifiable, social determinants of mental health difficulties and disorders; and ‣ clearly visualised and easily understandable data on weight and mental health across the developmental years. What are the key baseline data on these indicator measures that are available? • Almost one in four 5–14‐year‐olds (24%) and two in five 15–24‐year‐olds (41%) are affected by overweight or obesity (29% in regional and remote areas) (source: National Health Study, 2017–18 financial year).7 • Two in five 16–24‐year‐olds (40%) meet the criteria for a mental disorder (source: National Study of Mental Health and Wellbeing, 2020–21).19

Kate Lycett · Georgie Frykberg · Peter S Azzopardi · Joyce Cleary · Susan M Sawyer · John W Toumbourou · Tim Slade · Craig A Olsson

Evidence showing the importance of education as a determinant of individuals’ health and wellbeing is among the most agreed by scholars and practitioners.1 Quality and equity of education have strong associations with individuals’ life expectancy, morbidity and health behaviour, and educational attainment is important to people's health as it shapes their further education, employment and success in life.2 Therefore, high quality education and health for all children and young people is at the heart of employment pathways for societal progress that reaps profound intergenerational benefits. It is one of seven domains considered in the MJA supplement on the Future Healthy Countdown 2030. Australia is struggling to provide the foundations for learning and wellbeing for many young Australians that would enable them to live a good life in adulthood. We can turn this around by broadening the approaches to and outcomes of schooling from academic grades to whole child development, including better wellbeing and health for all. Much effort, little progress In international light, Australia has an advanced education system. In many ways it offers world‐class learning opportunities to children and youth, but unfortunately not for everyone. While having mostly well educated teachers and many innovative schools, Australian education is rated as unequal when compared with education systems of other advanced wealthy nations.3 This is not a problem caused by schools or teachers; it is because the education system has been designed in a way that leaves many children behind in both learning and health outcomes.4,5 But it does not have to be this way. Education and health in modern societies are not cheap — anywhere. On average, Organisation for Economic Co‐operation and Development (OECD) countries invested about 3.5% of their national wealth (or gross domestic product [GDP]) in primary and secondary education and 9.7% in health in 2020.6,7 Australia spends more than other OECD countries on school education — 4.1% of GDP. Where that money to finance schools comes from varies from country to country. In European Union countries and the United States, for example, private share of total education expenditure is about 8%, while in Australia it is 18%.8 Another way to say this is that Australian governments spend about the same amount of GDP on school education as OECD countries on average, and that the rest comes from parents and other private sources. So, most Australian parents who can afford to pay have access to world‐class schooling for their children. Another difference between Australian schools and those of the OECD countries is that Australian children spend more time in school receiving compulsory instruction than their peers in other OECD countries.8 In OECD countries, on average, students have 4600 hours of primary education and 3000 hours of lower secondary education. Australian children have about 11000 hours of primary and lower secondary education in total, as shown in Box 1. This is considerably more than in OECD countries on average, and yet these long hours of formal instruction do not turn into high quality learning outcomes or positive wellbeing as measured by current student assessments and health surveys. Another peculiar feature of Australian education today is persistent reliance on parental choice in the education marketplace as the preferred way to maintain and enhance learning outcomes for all. Free and only loosely managed school choice has been a defining part of federal and state public policies in the past, even when international advice has warned about adverse consequences of market models in education.9,10 As increasing amounts of government funds have been channelled into private and religious schools, chronic underfunding of most public schools has exacerbated inequities and contributed to higher concentration of disadvantaged students in the public system and declining equity of outcomes in Australia. The problem of socio‐educational segregation in Australia is widespread — more than 12% of all students are enrolled in a school where most children are socio‐educationally disadvantaged, and almost all students who are in schools with high concentrations of socio‐educational disadvantage are in public schools.11 It is not surprising that student learning and wellbeing does not flourish in this unequal and unfair educational environment. More data are being collected from schools and more money is being spent on schools than ever before, but educational performance (in terms of quality and equity) has not improved.12 This suggests that there is a need for different thinking about policies and strategies that would change these inconvenient trends for the better. The Alice Springs (Mparntwe) Education Declaration provides a useful framework for doing so.13 Snapshots of current student learning trends Pressing educational issues for Australian children and young people are well researched and reported.14,15,16 The challenge is more about how all that knowledge and understanding could be turned into better operational policies and investments that would make a positive difference. Moreover, trends in student learning and prevalent achievement gaps between various equity groups are nothing new (Box 2, Box 3); policy makers have been aware of these issues for a decade or more. Data from the National Assessment Program – Literacy and Numeracy (NAPLAN) that have been collected across the nation since the year 2008 provide another window to understanding educational progress, or lack of it, in Australian states and territories. NAPLAN tests students’ knowledge in reading and mathematics in Years 3, 5, 7 and 9. Overall, there has been no progress in literacy and numeracy since 2008, although the reason for introducing NAPLAN was to improve educational performance across the nation. For example, Australian students’ achievements in mathematics as measured by NAPLAN in Year 3 and Year 9 have not improved since 2008 (Box 2). It has been frustrating that despite numerous reforms, reviews and growing financial spending, Australian students’ performance in basic school subjects has not improved during the past two decades. Educational performance in Australia as a whole and within its different jurisdictions has systematically been measured since the 2000s. The OECD Programme for International Student Assessment surveys show that, in comparison to international benchmarks, Australian students’ academic achievements have declined since 2000.17 These data also show that large achievement gaps between different socio‐economic and other equity groups have persisted since 2000 (Box 3). There are notable differences in average student outcomes between different schools in Australia, beyond what could be explained by students’ backgrounds. The Productivity Commission analysis of NAPLAN data collected between 2013 and 2021 for mathematics revealed that Aboriginal and Torres Strait Islander students enrolled in schools with high concentrations of socio‐educational disadvantage (that are mostly government schools) were about half a year of learning behind other Aboriginal and Torres Strait Islander students in Year 3.11 This learning gap grew to 1.3 years by Year 9. Learning gaps between children from different equity groups that are substantial at the beginning of formal education are often magnified rather than narrowed during school years. This means that the time it would take for a typical student from a disadvantaged equity group to catch up with other students increases while students are in school. For example, learning gaps in mathematics continue to grow when the same cohort of students is followed from Year 3 to Year 9 (Box 4). New foundations for learning Not so long ago, for most children, school was the only place to learn sufficient basic knowledge and skills needed to have a job and live a good life. School then held the monopoly of learning. Now that monopoly is gone — children can learn anywhere, any time. Schools still play a significant role in teaching complex skills and competencies that are needed in work and the increasingly uncertain world. Critically, school should be the environment in which all children need to learn new skills for life and contemporary work, not just the basic knowledge and skills. School is also a place where they can develop attitudes and mindsets that equip them to participate confidently in a complex world. These new foundations — such as ability to think flexibly, manage impulsivity, use imagination in new situations, seek opportunities in complex situations, identify and use necessary resources, regulate one's own thinking, understand and improve one's own wellbeing, and take responsible risks — enable self‐regulated behaviour plus critical and creative thinking.18,19,20 As children and young people continue to learn through a variety of experiences in and out of school, it is becoming more important to address their personal interests and individual learning needs properly in school. Children's self‐directed, informal learning at home and in communities is taking an increasingly important role as digital technologies have become a natural way to communicate and process information. This was recently recognised by the Nest framework, developed by the Australian Research Alliance for Children and Youth in 2021, in which a new generation of child and youth voices defined the learning and employment pathways they require. Their definition emphasised the importance of having opportunities to participate “in a breadth of experiences where their learning is valued and supported by their family and in the wider community”.21 Student agency, in appropriate ways, in building these new foundations is critically important. Continuing to do more of the same to transform education makes no sense. We have all the necessary knowledge and practical wisdom to change the course towards a better and fairer education for all Australian children. But we need to do different things, and do them differently enough, to get there. For instance, improving education experiences for Indigenous children requires recognising the importance of First Nations’ knowledge and knowing, and this would benefit all children in Australia. National education policies have recognised that schools need to educate students for a world yet to be realised, meeting the needs of all students, and equipping them with transversal skills and general capabilities for future work and lifelong learning. International evidence suggests that there should be multiple pathways from school to the world of work if we want to meet the needs and interests of all young people.22 Furthermore, as we have suggested elsewhere, new foundations for learning should be built on whole child and whole school approaches that establish closer connections between learning and wellbeing in schools.23 Education attainment is a strong predictor of steady employment and better physical and mental health.24 The Australian Institute of Health and Welfare has identified the need for reporting to link health and welfare data to better understand the effects of social determinants of health and wellbeing through life: “Across all key determinants, evaluation of programs and interventions to identify successes in reducing inequalities is important.”25 The evidence is clear that education and health are positively connected — healthier students are better learners — and vice versa.26,27,28 If we are to turn things around by 2030, indicators need to focus attention on the range of current inequities in education outcomes in Australian education.29 These indicators also need to report publicly on policy approaches to reducing these inequities and progress made in terms of learning a broader range future skills and competencies at federal, state and territory levels throughout schooling from early learning to higher education and beyond. The National Report on Schooling in Australia as an annual review should provide the benchmarks for policy targets and new outcomes that address and reduce inequities. Key indicators relating to equity of education that are available are: proportion of students at or below proficiency levels in reading and mathematics; proportion of students enrolled in schools with high concentrations of socio‐educational disadvantage; achievement gaps in reading and mathematics between disadvantaged students in different equity groups in Years 3, 5, 7 and 9; and reading and mathematics achievement by the level of socio‐economic and educational disadvantage. In addition, beginning to track progress on the following indicators could help turn things around: clear and shared definition of what equity of education outcomes means across different education systems and sectors; data on broader outcomes of schooling (eg, transversal skills, psychosocial health and wellbeing, happiness, life satisfaction); student agency and engagement in school; and safety and belonging in school (for both children and adults). The evidence (summarised in Box 5) is clear and the road ahead should be too — educational and health inequities need to be addressed now before it is too late. Box 1 – Total number of compulsory instruction hours in OECD countries in primary and lower secondary education in 2019* OECD = Organisation for Economic Co‐operation and Development.* Source: OECD Programme for International Student Assessment database. Number after country indicates duration of primary and lower secondary education in years. Box 2 – Australian students’ national average achievements in mathematics in Year 3 and Year 9, 2008–2022* NAPLAN = National Assessment Program – Literacy and Numeracy.* Source: Australian Curriculum, Assessment and Reporting Authority database. Box 3 – Australian 15‐year‐old students’ average reading literacy scores in the OECD Programme for International Student Assessment (PISA), 2000–2018* SES = socio‐economic status.* Source: OECD Programme for International Student Assessment database. Box 4 – Australian students’ average mathematics scores in NAPLAN in the same cohort from 2015 to 2021* NAPLAN = National Assessment Program – Literacy and Numeracy.* Source: Productivity Commission estimates of de‐identified student‐level NAPLAN data. Box 5 – New foundations for learning in Australia What are the most pressing issues where change could make a real difference by 2030 and why? Academic outcomes are stagnant or declining while per‐student spending is going up. Student engagement in school weakens during schooling and fewer students think they benefit from schooling. Equity of education outcomes is weak and has worsened over time. More and more data are being collected — using data for transforming schools has become a problem. What are some of the key indicator measures available and what are we lacking? Key indicators ‣ regular census‐based data on literacy and numeracy proficiencies by year level (Years 3, 5, 7 and 9); and ‣ school completion rates for Year 12 (or equivalent). What is lacking? ‣ data on broader skills and competencies learned across Australian curricula in school, including creative problem solving, complex communication, self‐regulation and lifelong learning; and ‣ better data on student agency and engagement, wellbeing, and sense of belonging in school. What are the key baseline data on these indicator measures that are available? More than 20% of Australian 15‐year‐olds were low performing students in reading and mathematics in the Organisation for Economic Co‐operation and Development's Programme for International Student Assessment survey conducted in 2018. More than 12% of Australian students are enrolled in a school with high concentrations of socio‐educational disadvantage and that trend is worsening over time according to the MySchool database. For reading, the measured achievement gap between socio‐educationally disadvantaged and advantaged students grows almost threefold from Year 3 to Year 9 according to the Australian Curriculum, Assessments and Reporting Authority (ACARA) database.

Pasi Sahlberg · Sharon R Goldfeld

Public health policy decision making involves multiple actors, including government officials, health professionals, academics, advocacy groups, industry and the public. Questions of power lie at the heart of this process: who has the power to meaningfully participate in and shape public health policy, what factors influence decision making, and who is sidelined? To address the health and wellbeing of current and future generations — including the impacts of climate events, the promotion of harmful products, the predictors for mental ill‐health, food insecurity etc — the inequitable distribution of power and resources, and how these limit youth participation in decision‐making processes, should be considered. Specifically, the voices and experiences of Aboriginal and Torres Strait Islander, culturally diverse, low income, LGBTQIA+ and disabled children and young people (among other groups experiencing marginalisation) are seldom included in meaningful ways in public health decisions.1 “Participation” is one of seven domains considered in the supplement on the Future Healthy Countdown 2030 as essential to children and young people's health and wellbeing. Eight of the 16 national and international youth health and wellbeing frameworks outlined in this supplement's framing article2 recognise the benefits of youth participation in some form. The Nest framework developed in 2021 by the Australian Research Alliance for Children and Youth (ARACY) describes “Participation” through child and youth voices as children and young people having a say (ie, civic participation) in decisions that affect them.3 The United Nations (UN) Convention on the Rights of the Child further emphasises children's and young people's rights to express views that are taken seriously by decision makers.4 Critically, when viewed through a power lens, participation necessitates building the conditions that allow children and young people to have economic, social, institutional and political power to be influential members in society.5 Evidence suggests that children and young people should be supported to be architects of their futures because they have many strengths, including being more future‐oriented and affected by policy decisions for longer than adults, and often being highly engaged in social and political issues as mobilisers and advocates (eg, through social media and digital tools).6 Critically, youth participation can vary from manipulative and tokenistic forms of consultation where power is maintained by adults and institutions to youth‐led processes that support children and young people to influence or change systems through genuine partnerships and delegated forms of power and control.7 With children and young people often being under voting age and/or rarely having the same level of access to decision makers as older groups with more resources and power (eg, corporations), their policy participation can often be limited.6 Unfair biases that young people from certain demographic groups lack knowledge and expertise create additional barriers for their voices to be heard by decision makers. These examples and existing evidence suggest that youth participation is often poorly conceived and heavily constrained by the institutional status quo.5 With multiple public health issues (some at crisis levels) threatening the health and wellbeing of children and young people, diverse groups of young people and the UN are increasingly calling for governments and institutions to be held accountable for bettering youth participatory practices. These efforts aim for young people's power to be elevated to transform traditional adult‐centric institutional and policy decision making.8,9 Our team of young codesigners is comprised of 14 authors aged less than30 years with diverse lived experiences. We set out to explore how to strengthen and measure young people's power in public health decision making through various forms of participation. The topic was explored through three one‐hour open group discussions and by inviting each co‐author to freely contribute their ideas verbally and/or in writing. All authors approved the ideas expressed here, which illustrate ways to transform youth participation across levels of impact on public health. We map Australian examples using a three‐tier framework for advancing youth participation as per The SAGE handbook of youth work practice.5 Transforming institutional dialogue and perceptions of young people Developing youth‐affirming platforms The UN has institutionalised two major developments for young people in decision making: the UN Youth 2030 Strategy (2018)10 and the UN Youth Office (2022).11 The UN Youth Office aims to coordinate leadership, participation and advocacy for the advancement of youth issues (including advancing the Sustainable Development Goals) across the UN and member states.11 In 2021, the Youth 2030 global progress report indicated that not all UN entities were working to advance youth participation in health.12 In the Asia–Pacific region, it remains unclear whether opportunities for youth input into strategic UN developments will occur. However, young people in Australia have already demonstrated their capacity to advance the objectives of the UN Youth Office through strategies for social connection and partnership development globally. In the 2022 Australian Youth Representative to the UN report, Australian youth advocated for youth‐affirming structures that harness youth power and rights to contribute to effective health and social policy decisions.13 Recommendations include mentoring and affirming diverse youth perspectives in international diplomacy, providing networking opportunities across UN entities, providing resources that are free, evaluating youth contributions to knowledge‐building, and embracing future thinking and the acceleration of local action.13 Elevating diverse voices and experiences in policy dialogue Children and young people actively advocate for policies related to mental health, gun control, reproductive rights, climate change, and the right to healthy food, among other topics. The global Fridays for Future (www.fridaysforfuture.org) movement comprises decentralised organisations tackling climate change by elevating the voices of school students. Since 2018, Fridays for Future has also elevated the profile of health outcomes linked to climate change (eg, climate anxiety), centring these concerns in public policy discussions.14 Climate change experiences raised by young advocates in the hardest‐hit parts of the world, notably the Pacific Islands, are increasingly being integrated into public advocacy, demonstrating young people's responsiveness to greater inclusion and representation in policy.15 Bite Back 2030 (www.biteback2030.com) is another youth‐led movement in the United Kingdom focused on identifying and addressing the underlying inequities that contribute to child obesity. To challenge systems of under‐representation, young people involved in Bite Back 2030 are governed by a diverse, multicultural and representative National Youth Board consisting of 16 change makers. These youth advocates sit across different local governments and champion social equity by creating campaigns and leading policy conversations that elevate their lived experiences and stories.16 Maximising youth agency: supporting young people's leadership and creativity The UN Youth, Fridays for Future and Bite Back 2023 movements show us that children and young people everywhere want institutions to support their agency by fostering opportunities for youth leadership and creativity. Global Health Youth Connect (www.ghyc.org.au) is another example of this. It was established by Australian young people who are committed to engaging youth in understanding and addressing health inequities through a social determinants of health approach. Fundamental principles of Global Health Youth Connect include trusting young people to lead, innovate and have ownership over projects that align with causes they are passionate about, thereby showcasing their expertise and talents, which may otherwise be overlooked by decision makers. Two projects that exemplify this are the “Your Mind in Colour” (a mental health art and photography competition) and “My Body Is My Own” (a sexual health and body autonomy art call). Photovoice, an arts‐based visual approach that arms participants with cameras to foster social change, is an example of an evidence‐based participatory approach that can build bridges across communities (including with youth and decision makers), promote empathy, and inspire collective action towards creating more equitable health policies and programs.17 Generating new policy processes Codesigning equitable policy In Australia, the Centre for Multicultural Sport is a new initiative born out of the Centre for Multicultural Youth (CMY; www.cmy.net.au/victorian‐election) after the coronavirus disease 2019 (COVID‐19) pandemic lockdowns. Sport was identified as one way for traditionally excluded multicultural communities to have power in community decisions and achieve improved health and wellbeing.18 The Centre for Multicultural Sport uses a codesign model to inform its practices, giving youth a meaningful and powerful platform to identify equitable physical activity policy and practice recommendations. By integrating the collective voices of young people into the organisational practices of a well known not‐for‐profit organisation, the opinions of multicultural young people can overcome the power imbalances that traditionally exist and create a ripple effect across sports settings. If other youth‐facing organisations such as schools and universities used similar processes, young people with a range of experiences could inform health‐promoting policy that is culturally sensitive and builds their capacity for effective advocacy into the future. Investing in including youth voices in democracy Youth Affairs Council Victoria (YACVic) works to uphold the rights of young Victorians. The YACVic 2019 submission to the Royal Commission into Victoria's Mental Health System provides an example of how youth voice and power can inform policy decision making.19 The submission process was led by a diverse working group of 18 rural and regional children and young people aged 12–25 years and was strengthened by input from over 200 young people and sector workers across rural and regional Victoria. Members of the working group codesigned and cofacilitated the consultations across Victoria. Youth were upskilled in facilitation techniques, remunerated for their time and expertise, contributed to editing the submission, and codesigned resources and advocacy materials. The Commission's final report was well received by YACVic, which noted that it considered young people's calls to action, including a focus on codesigning mental health systems with young people who have lived experience.20 A similarly robust process was followed by the Youth Disability Advocacy Service's recent submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.21 This policy submission is the first of its kind to be peer‐led by a working group of five disabled young people, rendering investment in amplifying their lived experience invaluable to the process. Despite these case studies demonstrating movements towards better inclusion of diverse youth voices in institutions, leadership positions and high level policy processes, we must recognise case studies and evidence that have shown how governments and other institutions often mismanage the advice they receive from children and young people.22,23 To prevent this, youth participation efforts should be monitored with a view to reduce external barriers that prevent young people from having power in decision making and cocreate impactful pathways that shift power to children and young people.22 Tracking progress To date, measures of youth participation in civil society are limited in several ways, including a lack of explicit focus on health and power, a focus on individual rather than structural‐level participation (eg, volunteering), infrequent monitoring, and inadequate disaggregated data.24 Australia's First Wellbeing Framework, which was released in July 2023, is an example of how youth power is overlooked by governments and institutions in these ways.25 In the absence of established measures of youth participation in policy, we have worked with the Victorian Government's Department of Health to propose a Youth Engagement and Evaluation Framework.26 Such framework should inform the development of new indicators in future wellbeing frameworks that reflect government accountability for strengthening social cohesion through strengths‐based and structurally focused measures of youth participation across different cohorts of young Australians. Adequate resourcing, investment and political and institutional power sharing from adult stakeholders will be critical. Based on the available sources, we can begin to routinely track progress using the following five available indicators and reporting them by key sociodemographic characteristics (Box). These include two individual‐level indicators: The proportion of youth enrolled in voting (eg, the proportion of youth enrolled on the electoral roll, Australian Electoral Commission). In 2023, 90% of eligible young people aged 18–24 years were enrolled to vote.27 The proportion of youth participating in political groups and activities. This is measured annually for young people aged 15–19 years by the national Mission Australia Annual Youth Survey. In 2022, Mission Australia reported that participation in political groups and activities was less common than all other activities assessed, but higher among Aboriginal and Torres Strait Islander respondents (15%) compared with non‐Indigenous respondents (8%).28 And three structural and institutional indicators: The percentage of youth experiencing discrimination in decision making. This indicator measures the significant consequences for youth when there is a lack of opportunity for meaningful participation in policy. Although the Longitudinal Studies of Australian and Indigenous Children measure discrimination experienced by Aboriginal and Torres Strait Islander parents (87–93% experience discrimination daily) and racism experienced daily by Aboriginal and Torres Strait Islander children (46–59%), robust national estimates of the prevalence of discrimination and racism experienced by diverse groups of children and young people are lacking.29 The number of established federal‐ and state‐based Youth Commissioners, Offices for Youth participation, and youth‐focused activities across all government levels and sociodemographic characteristics.30 The Victorian Office for Youth (www.youthcentral.vic.gov.au) and the Youth Strategy 2022–202731 provide initial examples of these types of platforms. The number of government‐led training and mentoring opportunities for young people to participate in all aspects of public policy making relevant to their future health and wellbeing. The numbers, diversity and proportions of young people participating annually, should be routinely reported at all levels of government.30 Conclusion Power imbalances and structural factors currently prevent young people, especially those from under‐represented communities, from participating in public policy decisions that affect their health and wellbeing and that of future generations. Tangible opportunities for adult‐centred institutions to share power with children and young people by enabling inclusive dialogue and policy processes and investing in youth leadership, as we describe here, are required. Such opportunities allow decision makers to tap into the insights and creativity of young people to sustainably mobilise and measure policy responses that support wellbeing for all. A shift towards focusing on institutional barriers to the equitable participation of children and young people (rather than individually focused activities) and adequate resourcing of participatory activities will be central to realising this vision. Box – Future Healthy Countdown 2030 participation domain What are the most pressing issues where change could make a real difference by 2030 and why? There are few opportunities for children and young people to have power in decision making, especially those from under‐represented communities. Children and young people have the right to express their views and experiences and be supported by institutions and governments to shape decisions that affect their futures. What are some of the key indicator measures available where change could make a real difference by 2030? Key indicators:* ‣ the proportion of youth enrolled in voting; and ‣ the proportion of youth participating in political groups and activities. What is lacking? ‣ Structurally focused indicators that measure the extent to which institutional and government processes share power with children and young people are required. Examples include: ‣ the percentage of youth experiencing discrimination in decision making; ‣ the number of established federal‐ and state‐based Youth Commissioners and Offices for Youth participation; and ‣ the number of government‐led training and mentoring opportunities for children and young people to participate. What are the key baseline data on these indicator measures that are available? 90% of eligible young people aged 18–24 years were enrolled to vote in 2023. 8% of young people aged 15–19 years participated in political groups and activities in 2022 (15% for Aboriginal and Torres Strait Islander young people). * Available indicators are predominantly individually focused.

Kevin Kapeke · Khalid Muse · Jennifer Rowan · Planning Saw · Thomas White · Angelica Ojinnaka‐Psillakis · Tharidhu D Peries · Nicola P Miranda · Shireen Ali · Anyuop Dau · Luisa Taafua · Charlize Nalupta · Maeson Harvey · Christina Zorbas

The Lancet commission on culture in health1 identified positive cultural connections as key to achieving equity in health and wellbeing for all people; however, action towards culture in health has remained largely neglected. The intent of this article is not to debate any singular aspect of culture, identity, Indigeneity, or indeed Indigenous cultural identity, but to promote the application of a human rights and cultural lens across social determinant‐informed policy making, to facilitate positive health impacts and nurture and maintain wellbeing. “Positive sense of identity and culture” is one of seven domains considered in the MJA supplement on the Future Healthy Countdown 2030. While culture and identity is of importance to all people, it is especially relevant to children and adolescents given it is during early life that culture and identify are formed.2 Childhood and adolescence are also where individuals are exposed to, and where they can shape, the social determinants of health.3 Moreover, in this article, we argue that positive cultural practices and a strong sense of identity are protective factors for child and adolescent wellbeing (Box 1). Culture In its broadest sense, culture is said to be the whole complex of distinctive spiritual, material, intellectual and emotional features that characterise a society or social group. It includes not only the arts and languages but also modes of life, the fundamental rights of the human being, value systems, traditions, and beliefs. A loss of any cultural foundation is a loss to humankind.5 Importantly, culture is not static, it is fluid and adaptive, changing with time and geography and incorporating new events and exposures. In Australia, and around the world, various policies have perpetuated the systematic denial of the basic human rights of Indigenous peoples and other marginalised and vulnerable groups. These ongoing experiences of colonisation, exclusion and discrimination are critical to understanding the contemporary determinants of poor health that Aboriginal and Torres Strait Islander people (and other populations) continue to experience.6,7 Conversely, cultural policies and culture in policies aim to protect, stimulate and enrich each people's identity and cultural heritage, and establish absolute respect for and appreciation of cultural minorities and the other cultures of the world.5 Identity The definition of identity is a fluid, complicated and unclear concept that nonetheless plays a central role in ongoing debates.8 In very simple terms, it can be described as a sense of belonging that derives from shared origins or characteristics.9 We identify in many ways — according to gender, religion, geography, culture, hobbies, ethnicities, language groups — and how we identify, or how we attempt to build an identity for ourselves, is complex and multifaceted. For those who identify as Indigenous there are additional layers and complexities, including social and political discourse on identity and cultural belonging — the claims and counter claims, legal criteria imposed by colonisers, community gatekeepers and individuals who do not know the difference between heritage and legitimate Indigenous cultural ancestry and all of the responsibilities that come with such a privilege.10,11 Despite the tension and confusion, there is also growing evidence to confirm that a positive sense of cultural identity is a protective factor and supports the process of resilience.12,13 Further, identity is not only dependent upon individual status, but on community level and collective perspectives and connections. For Aboriginal and Torres Strait Islander peoples, identity is based on a cultural sense of self grounded within a collectivist perspective that views the self as inseparable from, and embedded within, family and community.14 Wellbeing Health and wellbeing are complex concepts and there is no clear consensus across or within cultures as to how these constructs should be defined.15,16 In broad terms, wellbeing is a good or satisfactory condition of existence; a state characterised by health, happiness and prosperity; a positive outcome that is meaningful for people. At a minimum, it includes the presence of positive emotions and moods (eg, contentment, happiness), the absence of negative emotions (eg, depression, anxiety), satisfaction with life, fulfilment, and positive functioning (social, economic). As outlined by national reference and working groups,17,18 there are nine guiding principles that underpin social and emotional wellbeing (Box 2); these include recognition of the centrality of kinship, cultural diversity, and Aboriginal strengths. Indigenous wellbeing is an inclusive concept that encompasses physical, psychological, social and cultural aspects, both individual and collective. Issues core to Indigenous wellbeing also include connection to one another and to the environment and natural world. For children and adolescents — as for all people — wellbeing is deeply impacted by the intergenerational impacts of discriminatory policies and practices, and the resultant trauma, grief, violence, diminished family and community cohesion, cultural dislocation, and socio‐economic disadvantage.19 Indigenous resilience Resilience may be defined as the capacity to cope with, and bounce back after, the ongoing demands and challenges of life, and to learn from them in a positive way.20 This includes positive adaptation despite adversity, or a class of phenomena characterised by good outcomes despite serious threats to adaptation or development.21 Resilience may also be considered as adaptation over time, “a dynamic process involving an interaction between both risk and protective processes, internal and external to the individual … of varying degrees of impact, and … at varying points in development”.22 The exploration of resilience is a powerful and culturally relevant construct. Cultural resilience is the capacity of a community or cultural system to absorb disturbance and reorganise while undergoing change, in order to retain key elements of structure and identity that preserve its distinctness.8,22,23 Iris Heavyrunner and other educators proposed additional cultural protective factors, cultural resources for resilience — symbols and proverbs from common language and culture, traditional child rearing philosophies, religious leadership, counsellors and elders.24 Social determinants of health We understand the social determinants of health to mean the conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels.25 It is widely accepted that health inequities arise from these social, material and political circumstances in which people live, and the systems put in place to deal with ill health.26 Marmot has also observed that the health gap between Indigenous and non‐Indigenous Australians “bespeaks large social inequalities”.27 However, addressing only social determinants will continue to fail Indigenous Australians. The social determinants of health are deeply situated within a deficit context. Although important in the pathway between cultural discrimination, marginalisation and poor health, a social determinants approach in isolation risks reinforcing this deficit perspective, emphasising poorer health outcomes for those from lower socio‐economic populations, with lower educational attainment, long term unemployment and welfare dependency, and intergenerational disadvantage.28 Cultural determinants of health and wellbeing Indigenous peoples the world over have long understood that positive cultural practices are protective, and can build resilience, particularly in children and young people. The United Nations and its affiliated agencies have considered culture in the context of community development, creating toolkits and indicators to measure impacts of culture on development and social outcomes,29,30 but have not connected culture to health outcomes. The lead author of this article (NB) has been working for many years to articulate and develop a framework for the cultural determinants of health using a strengths‐based approach that acknowledges that stronger connections to culture and country build stronger individual and collective identities, a greater sense of self‐esteem, resilience, and improved outcomes across the social determinants of health, including education, economic stability and community cohesion. A positive sense of self, inclusive of domains across culture, spirituality, politics and social engagement, is a key factor in strengths‐based approaches and positive trajectories across the life course. A growing body of evidence demonstrates that the protection and promotion of traditional knowledge, family, culture and kinship contribute to community cohesion and personal resilience.4,11,17 Further, cultural links and practices — for example, extended family, access to traditional land, revitalisation of traditional languages, learning dance and story, and understanding traditional roles and responsibilities — are protective factors that improve resilience against emotional and behavioural problems.31 To illustrate this approach, NB developed a conceptual framework (Box 3) reflective of the Articles of the United Nations Declaration on the Rights of Indigenous Peoples, proposing that these cultural determinants underpin social determinants.32 The original framework has been expanded to consider examples of implementation and measurement of these cultural determinants and is presented in Box 4.33 Both frameworks were presented at the United Nations Permanent Forum on Indigenous Issues. Relevance and utility A combined social and cultural determinants approach recognises that there are multiple, complex drivers of wellbeing and ill health, many of which lie outside of the health sector, and which therefore require a collaborative, inter‐sectoral approach. Indigenous perspectives and practices also hold the promise of benefiting mainstream systems and enabling positive social determinant impacts for all. Lessons learned through experience in Indigenous health and politics (nationally, regionally, globally) reinforce that Indigenous perspectives, values and practices can enrich our professions, communities and policy environments far beyond the limits of Indigenous services. What we do as Indigenous communities, parents, clinicians, educators and knowledge holders may be freely gifted if the systems and services are ready to embrace truth telling, understand the context, and honour the gift. To reinforce the message — Indigenous rights are human rights. The cultural determinants are just as relevant to culturally and linguistically diverse groups, LGBTQIA+ people, refugees and non‐Indigenous communities as they are to Indigenous peoples. The guiding principles are self‐determination, freedom from discrimination, freedom from assimilation, and collective rights. If we, as a nation, want our children to be physically, emotionally and psychologically healthy, to be generous, kind and resilient, to be active social and economic participants, and if we hope to mitigate their risk of vulnerability to antisocial influences or radicalisation, then we need to work harder to ensure they know that they are loved, supported, heard. Positive cultural practices are protective factors against toxic stress, health risk, mental health, and behavioural issues. Moving towards a more sensitive measure of wellbeing The Human Development Index is a tool developed by the United Nations to measure and rank countries’ levels of social and economic development based on four criteria: life expectancy at birth; mean years of schooling; expected years of schooling; and gross national income per capita.34 A key question is whether these truly reflect and measure what is most relevant to people, including Indigenous peoples. Using economic parameters does not capture how people feel about their lives; for example, the quality of their relationships, their positive emotions and resilience, the realisation of their potential, or their overall satisfaction with life. Further, wellbeing approaches acknowledge that money is not the answer, and that macro‐economic measures such as gross domestic product do not comprehensively capture or reflect what ordinary people perceive about the state of their own lives. Hence the need to develop less traditionally mainstream measures and indicators to reflect progress toward improved social and cultural determinants of health — metrics that better capture how people feel about cultural identity, cultural connections, language reclamation, and Indigenous content in mainstream curricula. Box 1 – Aragung buraay: culture, identity and positive futures for Australian children What are the most pressing issues where change could make a real difference by 2030 and why? Policies have perpetuated the systematic denial of the basic rights of Indigenous peoples and other marginalised groups, including cultural practice and identity. Positive cultural practices and a strong sense of identity are protective factors for child and adolescent wellbeing that we urgently need to foster through intentional policies. Indigenous perspectives and practices also hold the promise of benefiting mainstream systems and enabling positive social determinant impacts for all. What are some of the key indicator measures available? Currently available national indicators of cultural wellbeing are limited. Those that are available are: ‣ Cultural pride: Proportion of children and adolescents who are proud of their culture (measured in the National Aboriginal and Torres Strait Islander Social Survey [NATSISS] for Indigenous youths aged 18–24 years). This measure should be included in regular national surveys such as the National Health Survey to be inclusive of all children. ‣ Language: Proportion of Indigenous 10–24‐year‐olds who speak a few words or more of Indigenous language, included in the NATSISS. ‣ Racism: Proportion of Indigenous 10–14‐year‐olds attending school who are bullied or treated unfairly because they are Indigenous, and the proportion of Indigenous people 15–24 years of age who felt discriminated against in previous 12 months. These are included in the NATSISS and are therefore currently specific to Indigenous people. These are measures that should be included in regular national surveys such as the National Health Survey to be inclusive of all children. ‣ Impact: The impacts of cultural wellbeing and toxic exposures such as racism on health and wellbeing are many. One indicator is suicide mortality for children and adolescents (aged 10–24 years) reported in 5‐year age bands.4 A measure that is needed is: Aboriginal and Torres Strait Islander education content for all children — this can be measured by the number of states/territories that have Aboriginal and Torres Strait Islander education content for all children as part of the core education curriculum. Box 2 – Nine guiding principles that underpin social and emotional wellbeing Health as holistic The right to self‐determination The need for cultural understanding The impact of history in trauma and loss Recognition of human rights The impact of racism and stigma Recognition of the centrality of kinship Recognition of cultural diversity Recognition of Aboriginal strengths Created by Social Health Reference Group;17 adapted from Swan and Raphael.18 Box 3 – The cultural determinants of health and wellbeing32 Referencing the United Nations Declaration on the Rights of Indigenous Peoples and other human rights instruments, the cultural determinants of health and wellbeing include, but are not limited to: Self‐determination Freedom from discrimination Individual and collective rights Freedom from assimilation and destruction of culture Protection from removal/relocation Connection to, custodianship and utilisation of country and traditional lands Reclamation, revitalisation, preservation and promotion of language and cultural practices Protection and promotion of traditional knowledge and Indigenous intellectual property Understanding of lore, law and traditional roles and responsibilities Box 4 – Implementation and measurement examples of the cultural determinants of health and wellbeing33 Cultural determinants Human rights instrument/s Domain Sector/service examples Indicator/measure examples Self‐determination UDHR; UNDRIP Human rights, law and justice, social inclusion Aboriginal Community Controlled Health sector The number of new and established Aboriginal Community Controlled Health Services Freedom from discrimination ICERD; ICESCR Politics, service delivery, social policy, law and justice 3AQ (availability, accessibility, acceptability and quality framework) culturally safe services Zero tolerance policies and legal protections (Commonwealth, states and territories) Decreased number of complaints to Australian Human Rights Commission Individual and collective rights UNDRIP; ICCPR Law and justice, employment, economics, social policy Citizenship, cultural rights, human rights Some knowledge cannot be individually owned (eg, genetic/biological information) Australia incorporates Articles of international human rights instruments into domestic legislation Constitutional reform — does not allow Commonwealth to enact racist legislation Compulsory research agreements that ensure legal and ethical protections, addressing self‐determination, priority setting, benefit sharing Freedom from assimilation and destruction of culture ILO Convention (No. 169) on Indigenous and Tribal Peoples; ICCPR Law and justice, service delivery, social policy, politics, education Inclusive policies and resourcing Education reform National curriculum in primary and secondary schools addressing history, Indigenous culture, local language, local teachers Policy impact assessments Political representation Repatriation of historically held collections Protection from removal/relocation CRC; ICERD; UNDRIP Law and justice, service delivery Birthing Dialysis Education Ongoing removal of children Develop a model of service delivery, funded to provide co‐located primary, secondary and tertiary services The number of Aboriginal Community Controlled Health Services supported to provide comprehensive co‐located care (eg, midwife‐led antenatal and birthing clinics in regional/remote areas) Aboriginal Community Controlled Health Services as child protection hubs/champions Connection to, custodianship and utilisation of country and traditional lands ILO Convention; ICESCR; Convention on Biological Diversity Native title and land rights, environment Formal acknowledgement and validation of cultural knowledge and practices Upscaling Indigenous enterprises Increased number of rangers and trainees Micro‐financing initiatives/opportunities Expedited native title determinations Heritage and National Park orders Reclamation, revitalisation, preservation and promotion of language and cultural practices CRC; ICESCR Education, employment Australian Institute of Aboriginal and Torres Strait Islander Studies Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women's Council Language education courses Employment of cultural educators Funded local cultural education initiatives Network of cultural immersion schools Protection and promotion of traditional knowledge and Indigenous intellectual property ILO Convention; Universal Declaration on Bioethics and Human Rights Law and justice, ethics International human rights instruments and agencies UNPFII, ECOSOC, UNESCO Domestic legislation (Commonwealth) Ethical guidelines and legal protections — custodianship of traditional/cultural language, songs, stories, images, designs, biological material Authority to negotiate benefit Understanding of lore, law, traditional roles and responsibilities UNDRIP Education Strong, resilient Surviving in difficult environments Strict social structures, clear social roles Need platforms for protection, promotion, revitalisation of traditional knowledge and practices Engaging and remunerating traditional healers Cultural education networks CRC = Convention on the Rights of the Child; ECOSOC = Economic and Social Council; ICCPR = International Covenant on Civil and Political Rights; ICERD = International Convention on the Elimination of All Forms of Racial Discrimination; ICESCR = International Covenant on Economic, Social and Cultural Rights; ILO = International Labour Organization; UDHR = Universal Declaration of Human Rights; UNDRIP = United Nations Declaration on the Rights of Indigenous Peoples; UNESCO = United Nations Educational, Scientific and Cultural Organization; UNPFII = United Nations Permanent Forum on Indigenous Issues.

Ngiare Brown · Peter S Azzopardi · Fiona J Stanley

As highlighted by the recent World Health Organization–UNICEF–Lancet Commission on children wellbeing, our children face an uncertain future.1 As stated in the Commission's report, “Climate change, ecological degradation, migrating populations, conflict, pervasive inequalities, and predatory commercial practices threaten the health and future of children in every country”.1 The welfare of Australia's children, young people and future generations is certainly under threat (Box). Ensuring all children and young people have the right to clean, healthy and sustainable environments has recently been adopted within the United Nations Rights of the Child (General comment no. 26).2 “Environments and sustainable futures” is also one of the seven domains considered in the MJA supplement on the Future Healthy Countdown 2030, which aims to track key indicators of children's and young people's wellbeing and outline policy areas where change could make a real difference by 2030. Australia is doing badly on climate and sustainability issues Two recent reports highlighted just how badly Australia is doing and how lowly it ranks on climate and sustainability issues.1,3 The premise here is that although high income countries may rank well on conventional statistics that favour survival and flourishing, they are doing so at the expense of compromising a sustainable future for their children. However, total country data hide significant inequalities across diverse groups and locations within the country (see below). The WHO–UNICEF–Lancet Commission created a sustainability rank based on carbon emissions exceeding 2030 targets.1 Using this method, Australia ranked 174 out of 180 countries, with excess emission of 524%. Only Qatar, Trinidad and Tobago, Kuwait, the United Arab Emirates, Bahrain and Saudi Arabia, which are all oil and gas producing nations, ranked lower.1 UNICEF recently released the 17th Innocenti Report Card, a series designed to monitor and compare the performance of economically advanced countries in securing the rights of their children.3 The report, titled Places and spaces: environments and children's wellbeing, focused on three questions: How do environmental factors affect children's wellbeing? How are many of the world's richest countries faring in terms of providing a healthy environment in which children can live, develop and thrive? What actions can these countries take to improve the environments in which children live? There are also three cross‐cutting themes that will guide how to respond to this report. These illustrate interlinkages, suggesting the need for whole‐of‐government and whole‐of‐society responses; demonstrate the considerable inequalities in these environments and, therefore, the variability in children's responses (thus the causes of poverty in our nations need to be seriously addressed); and identify how powerless children are with respect to influencing policies (with good examples of how to engage young people in the solutions to improving these environments). The report was a damning indictment for most wealthy countries but particularly so for Australia. Unhealthy living conditions can irreversibly harm children's mental and physical wellbeing, their cognitive development and, hence, their prospects for a happy and healthy life. A life that enables their full participation as citizens. High density traffic, air pollution and limited urban green spaces mean that many children find it hard to avoid such dangers. Children are most vulnerable to these environments as they have a longer lifetime of exposure and are more immature in their ability to mitigate the effects.3,4,5 The UNICEF report card is quite different from its predecessors in two main ways: it focuses on environments that are either positive or negative for childhoods, rather than on measuring and ranking outcomes; and it used high quality data that in many cases did not depend on the nations to provide it. This independently collected information is comparable across time and between geographic locations. The data are used to rank countries across expanding sets of environments: those close to the child such as air, noise and light pollution, water quality, heat and cold, toxicants and pesticides. The next level of environments are community spaces — the area of green spaces and play facilities, housing quality, public transport, walkability and traffic. The overarching global influences include emissions, waste and recycling, management of the natural environment, climate change and natural disasters, renewable energy and housing, transport, and food policies. If the rest of the world behaved like Australia, we would need five planets Earth to ensure survival for us and our children Australia performs very badly in the broader category of the world at large, both historically and currently. Australia had very low rankings on areas that should guide our climate and environmental policies.1,3 We produced 21.7kg of electronic waste per person per year, ranking 38 out of 43. Our consumption‐based carbon dioxide (CO2) emissions since the Kyoto protocol was adopted in 1997 were 14.8 tonnes per person per year, ranking 39 out of 43 (with the United States and Canada). Australia, the US and Canada emitted more metric tonnes of CO2 per capita than any other Organisation for Economic Co‐operation and Development (OECD) country. Yet you still hear arguments that we are so small that our emissions contribute very little. If the rest of the world behaved like Australia, we would need five planets Earth to ensure survival for us and our children. Thus, as global citizens we perform very badly indeed. Despite recent changes in government rhetoric, there are still large sections of politics and industry wedded to coal‐fired electricity generation. In addition, gas developments are still being approved, even on sacred Indigenous lands. In the overall league table, 43 OECD countries are ranked in these three environmental domains. Australia ranks at 30 with Canada (28), Latvia (29) Israel (34) and the US (37). Spain is ranked 1 and clearly performs better than most in all three environmental domains. But no country does well overall and there is obviously substantial room for improvement in all countries. The report highlights how these analyses link to both the UN Convention on the Rights of the Child and the Sustainable Development Goals. So why do we rank so low? Australia ranks well on current air pollution from particulate matter 2.5 (exposure in parts per million), not so well in water‐related morbidity of children aged less than 15 years (maybe influenced by our poor regional and remote water quality),6,7,8,9 too many of our children have high levels of lead compared with children from other OECD countries and more of our children are exposed to pesticide and other chemical pollution. Although Australia rated well on air pollution at the population level, the report did not measure the main pollutant from vehicle emissions (nitrogen dioxide), which we know is poor in certain parts of the country (eg, Melbourne's Inner West).10 Similarly, although water sustainability rated well, access to fresh drinkable water is poor in many rural and remote communities, especially those housing Indigenous children.6,7,8,9 Even though there were no analyses by subpopulation, the data clearly showed that people who are poorer and marginalised (eg, Aboriginal and Torres Strait Islander people) are more likely to have less capacity to cope with the stresses and environmental conditions outlined in this report. Much data collected in Australia relevant to child wellbeing are not categorised by subpopulations,8,11 making meaningful examinations of disadvantage impossible. There are a number of climate and sustainability issues that are highly relevant to our children. Australia is experiencing unprecedented and extreme floods, fires, major heatwaves, and drought. These events lead to major changes in land use, population displacement, and disruption to children's schooling. The impacts of such events on mental health are being recognised, but perhaps less evident is an increase in child anxiety.12 A global survey of 10000 children and young people conducted in mid‐2021 reported that 82% of Australian children were at least moderately worried about climate change, with 32% reporting their anxiety negatively affected their functioning.12 Similar data were reported in the UNICEF report, with just over 40% of Australian young people stating they would be hesitant about having children due to climate change and a staggering 60% reporting beliefs that their government was betraying them and their future due to inadequate climate policies.3 Our children are subjected to predatory marketing One of the sustainability issues highlighted by the WHO–UNICEF–Lancet Commission report affecting children's future was predatory marketing.1 Children are specifically targeted by marketing of unhealthy and unsafe products, especially related to cigarettes and electronic cigarettes, junk food (high in calories, fat, sugar and salt), gambling, and sexualisation of children. Much attention has been paid to junk food and to sexualisation of children, and although these remain problems for Australian children, more attention needs to be paid to electronic cigarettes and gambling. Despite officially not available to Australian children, electronic cigarettes are becoming a growing problem, increasing exposure to toxic chemicals and nicotine, even in those claiming not to include nicotine.13,14 A major problem facing Australia's children is the enormous penetration of the gambling industry into their lives. It is not possible to watch sport without being bombarded by gambling advertising. Children readily recognise logos of gambling companies and are gaining the impression that gambling is harmless — after all if you lose you get your money back.15,16 What is perhaps more disturbing are the political donations from the gambling industry that are currently attracting media attention, which is reminiscent of the past behaviour of the tobacco industry.17,18 We encourage UNICEF to include measures of predatory marketing practices in their next report card. There are glimmers of hope on the horizon, with a public backlash against gambling advertising during televised sport. Very recently, a public push has emerged for the government to implement a comprehensive ban on sports gambling advertising following the release of the report from the Parliamentary Inquiry on Online Gambling and its Impacts on Those Experiencing Harm.19 Support is increasing among players of some sporting teams for their clubs to reduce reliance on gambling revenue. So, how can we improve the future of Australia's children and young people? Several groups, including an offshoot from the WHO–UNICEF–Lancet Commission known as CAP‐2030 (Children in All Policies 2030; https://cap‐2030.org/), have suggested viewing all government policy through a child's lens. This would see the responsible Minister explain to Cabinet how the new policy being promoted would affect children if adopted. This would advance several important goals; for example, the impacts on children would be actively considered, the natural government silos would be opened, and governments would be forced to think beyond the next election when framing policy. In addition, publicising the UNICEF Innocenti report widely and making Australia's ranking an instrument by which politicians can be held accountable would improve our children's future. Turning things around in the environment and sustainability domain is crucial to all living beings, as the goal of keeping global warming within 2°C is slipping further and further out of sight. Key indicators that can help us track our progress in this domain and ensure we can make a difference in this area for children, young people and future generations by 2030 include consumption‐based CO2 emissions, metric tonnes per capita; and the ratio of a country's ecological footprint to its biocapacity. In addition, we call for indicators of predatory marketing practices, such as electronic cigarettes, gambling and junk food. Our children are our future, but their future is under threat. A concerted effort is required to change this situation and putting children at the centre of all policy decisions would be a good start. Box – Environments and sustainable futures under threat for our young What are the most pressing issues where change could make a real difference by 2030 and why? Climate change, ecological degradation, migrating populations, conflict, pervasive inequalities, and predatory commercial practices threaten the health and future of children in every country. The welfare of our young is certainly under threat. What are some of the key indicator measures available and what is lacking? Key indicators: ‣ consumption‐based carbon dioxide (CO2) emissions, metric tonnes per capita; and ‣ the ratio of a country's ecological footprint to its biocapacity. What is lacking? ‣ Measures of predatory marketing practices (eg, junk food advertising, electronic cigarettes and gambling). What are the key baseline data on these indicator measures that are available? Australia's consumption‐based CO2 emissions since the Kyoto protocol was adopted in 1997 were 14.8 tonnes per person per year, ranking 39/43 (with the United States and Canada). If the rest of the world behaved like Australia, we would need five planets Earth to ensure survival for us and our children.

Peter D Sly · Fiona J Stanley

The pandemic’s ultimate impact on cancer outcomes is likely to be multifaceted

Karen Canfell · Karen Chiam · Carolyn Nickson · G Bruce Mann

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

SGLT2 inhibitor use in heart failure patients without diabetes should have minimal risk of ketoacidosis

Lisa M Raven · Christopher A Muir · Jerry R Greenfield