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Investigating the health impacts of the Ranger uranium mine on Aboriginal people

Stillbirth and cancer rates are significantly elevated among Aboriginal people living near the Ranger uranium mine Stillbirth and cancer incidence rates are significantly higher among Aboriginal people living near the Ranger uranium mine than among Aboriginal people elsewhere in the Top End of the Northern Territory, with a stillbirth rate over twice as high and cancer incidence almost 50% higher.1 The NT Chief Health Officer commissioned an investigation into the excess stillbirths and cancers in 2014, but a November 2020 report found no explanatory cause.1 The Ranger uranium mine ceased operations as planned in January 2021.2 Communities expect health departments to respond to reports of clusters of adverse health outcomes such as the excess stillbirths and cancers among Aboriginal people living near the Ranger uranium mine.3 However, investigating clusters of health outcomes which have complex aetiologies rarely provides definitive answers.3 Even when associations are identified, cluster investigations cannot demonstrate that these associations are responsible for the disease cluster. Nonetheless, important environmental, public health and social problems may be identified through cluster investigations, enabling health education and promotion, and potentially, mitigation of contributing causes.3 The Ranger mine cluster investigation focused on ionising radiation as a potential cause of the excess stillbirths and cancers because this was considered the worst‐case scenario.1 There are well established causative associations between ionising radiation and increased rates of some cancers, particularly lung, head and neck, thyroid cancer in childhood and leukaemia, and fetal malformations that lead to stillbirth.1 Tobacco and alcohol consumption likewise contribute to stillbirths and cancers, and these were also examined in the cluster investigation, together with markers of poor nutrition.1 High levels of alcohol consumption by Aboriginal people in the Ranger mine region have long been a concern.4,5 The Ranger uranium mine in Kakadu National Park Uranium mining began at a location labelled “Ranger” in 1980 on land excised from the Kakadu National Park World Heritage site.6 Aboriginal rights to veto mining were overridden in legislation, and detrimental impacts on Aboriginal people were anticipated, but market prospects for uranium appeared strong and the mine was considered to be in the national interest. Mining was allowed to proceed, with recommendations to monitor and reduce harmful impacts on the region’s Aboriginal people.4,7 Health, social and ecological aspects of the Ranger uranium mine were explored in a 1984 report, whose authors recognised that their immersion into Aboriginal communities gave them deep concern about how uranium mining could affect Aboriginal people.5 They recommended that uranium mining not expand without interventions to mitigate harmful and strengthen positive effects of mining on Aboriginal people.5 Mining continued for 40 years, and the Ranger uranium mine contributed up to $388 million annually to the NT economy before its 2021 closure.2,8 During the period of mine operation, more than 200 leaks, spills and other incidents were documented.9 Five major incidents are outlined in Box 1, highlighting threats to ecosystems and employees more than radiation exposure among Aboriginal community residents.9,10 The Gundjeihmi Aboriginal Corporation represents the Mirarr people of the region and for decades has expressed grave concerns about continuing incidents and the lack of effective government response.7 While the Mirarr people maintain the right to live on their lands, their lives are disrupted by mining operations and incidents that threaten biodiversity, landscapes and livelihoods.7,9 In 2014, the mine operators lodged a proposal to expand. A submission on the proposal by the NT Department of Health noted that rates of stillbirth and cancer among Aboriginal people in the region were elevated.1 NT Department of Health investigation In 2014, the NT Chief Health Officer commissioned an investigation into stillbirth and cancer rates in long term Aboriginal residents around the Ranger mine. The investigation aimed to quantify rates and identify exposures that may have contributed to the excess stillbirths and cancers. Stakeholders including Aboriginal health and land corporations and public health and politics experts oversaw the investigation to ensure transparency, while independent epidemiologists scrutinised the investigation’s scope, design and conduct. The investigation report was released publicly in November 2020.1 The investigation identified all Aboriginal people who had spent more than half of their lives in the mine region during the 1991–2014 study period, with an exposed cohort of about 2200 people. The focus was ionising radiation because this exposure was considered the worst‐case scenario.1 The mine employed few local Aboriginal people, so occupational exposures were not considered.1,2 The comparison group comprised all other Aboriginal people in the Top End.1 Elevated stillbirth and cancer incidence rates among Aboriginal people living near the Ranger mine compared with other Aboriginal people in the Top End were confirmed. Stillbirth was over twice as common (odds ratio, 2.17; 95% CI, 1.13–3.82) and cancer about 50% more common (total cancer incidence ratio, 1.48; 95% CI, 1.17‐1.85).1 Examination of the cancer types showed that no specific cancer was responsible for the excess of total cancers. Cancers of the lip, mouth and pharynx together were the most common cancers and made up 42% of the excess: 16 cases, compared with 5.5 expected. These cancers are not considered to be caused by ionising radiation, but they are associated with tobacco smoking and alcohol consumption.1 The Aboriginal people living near the mine had higher prevalence of tobacco smoking (prevalence ratio, 1.08; 95% CI, 1.04–1.13), alcohol use (prevalence ratio, 1.21; 95% CI, 1.13–1.31) and infrequent intake of vegetables indicating poor nutrition (prevalence ratio, 1.08; 95% CI, 1.02–1.24) compared with other Aboriginal people in the Top End. Other risk factors were not statistically different between the groups. Multivariable analysis did not show that these risk factors contributed to the excess cancer incidence in the people living near the mine (Box 2). However, this analysis had low statistical power because of a lack of risk factor data.1 The investigation found “little evidence that the risk factors investigated … were associated with increased risk of cancer in study participants” in the period for which risk factor data were available.1 Despite this statistical conclusion, higher rates of tobacco smoking and alcohol use and poor diets among Aboriginal people in the mine region were highlighted in relation to the excess stillbirths and cancers. The investigation concluded by recommending that Aboriginal people follow advice about smoking, alcohol and diet.1 Discussion The Ranger uranium mine has had an impact on surrounding Aboriginal communities for over 40 years. The investigation by the NT Department of Health into the rates of stillbirths and cancers among people in the region invested significant resources and expertise in gathering data on stillbirths, cancers, ionising radiation and behavioural risk factors. It focused on cause–effect relationships between possible exposure to ionising radiation and behavioural risk factors, and the increased stillbirth and cancer rates. The investigation was not designed to consider the impact of the imposition of uranium mining on Aboriginal lands, as was recommended when the mine was proposed and developed.4,5 Development of the Ranger mine entailed nullification of veto rights, disempowering Aboriginal communities and threatening their livelihoods.7 With mining came royalty money, expensive commodities, money‐hunger and alcohol.5 Economic development from the mine has increased inequity among Aboriginal people in the region.5 Inequity may contribute to both stillbirths and cancer, although this would not be detected in a cluster investigation.3,11,12 Employment and educational opportunities associated with the Ranger mine did not promote socio‐economic development of the Aboriginal community; rather, Aboriginal wellbeing deteriorated through people relying on royalty income.2,7 Aboriginal people’s rights were ignored, and their expertise, authority and lifeways were devalued by the mine.7 Aboriginal community perspectives, knowledge and research methodologies may offer important insights into adverse Aboriginal health outcomes, while marginalising Aboriginal expertise perpetuates the impacts of colonisation.13 Excess stillbirths and cancers may be associated with a web of interrelationships between individuals, communities and wider ecological, sociological and political environments, which a biomedically focused investigation may overlook.14 Further research is needed to unravel this web, and explain the disparity in stillbirth and cancer rates between Aboriginal people in the region of the mine and the other Aboriginal people in the Top End. The NT Department of Health stillbirth and cancer cluster investigation recommended that Aboriginal people in the region reduce their tobacco and excessive alcohol consumption, although these were not considered the causes of the raised stillbirth and cancer rates.1 This response could be strengthened by a foundational approach to improve understanding and relationships between government, mining companies and Aboriginal community members.2 Conclusion The investigation by the NT Department of Health into the excess stillbirths and cancers among Aboriginal people living near the Ranger uranium mine was transparent, detailed and publicly available. High level expertise was engaged, although stronger Aboriginal contribution to the investigation’s grounding and methodology may have enhanced two‐way intercultural learning.13 Research from Aboriginal community perspectives that focuses on improving health and wellbeing may lead to possible interventions. While the mine is now closed and undergoing rehabilitation, there is an opportunity for further research to better understand and close the gap in health risk exposures and outcomes between Aboriginal people in the region of the mine and other Aboriginal people in the Top End. Box 1 – Major incidents at the Ranger uranium mine, 1979–20139,10 Date Location Incident Outcome Risk minimisation December 1995 Retention pond 2 at power station 12 000 litres of diesel fuel spilled World’s richest tropical waterbird breeding ground threatened; 40 identified waterbirds perished Office of Supervising Scientist designated this as unacceptable environmental impact. Increases in monitoring not implemented due to mine operator’s other commitments January–April 2002 Headwaters of Corridor Creek, southern side of mine Incorrect stockpiling of low grade uranium ore Water contaminated by leakage of uranium Remedial works undertaken in February 2002. No source found for ongoing run‐off identified in April March 2004 Ranger mine utility site Process water connected to drinking water, leading to water uranium levels 400 times Australian standards 159 workers potentially exposed to contaminated water for drinking and washing Mine operator prosecuted and fined $150 000 January–June 2011 Region wide Extreme wet season Risk of overflow from tailings dam Uranium mill was shut for duration of wet season December 2013 Ranger mine site Collapse of acid leach tank 1 million litres of radioactive ore slurry spilled Area was evacuated until spill contained Box 2 – Total cancer incidence rate ratios for Aboriginal people living near the mine compared with other Aboriginal people in the Top End of the Northern Territory, by selected risk factors*,1 Risk factor Cancer incidence rate ratio (95% CI) Tobacco smoking 1.53 (0.75–3.12) Alcohol use 1.54 (0.76–3.15) Infrequent vegetable intake 1.49 (0.73–3.06) * Poisson regression model adjusted for age and sex.

Rosalie Schultz

Mja2 51198

Low value care is a health hazard that calls for patient empowerment

To protect themselves from the potential harms of low value care, patients must take an active role in clinical decision making Low value care is care that is ineffective, harmful or confers marginal benefit at disproportionately high cost.1 Professionally‐led campaigns such as Choosing Wisely Australia and the Royal Australasian College of Physicians’ EVOLVE program aim to reduce the prevalence of such care. However, similar overseas campaigns have been marred by selective focus on infrequent, low impact, or less financially lucrative practices;2 uncertainty about the most effective de‐adoption strategies;3 and limited success to date in reducing overuse.4 While clinician‐targeted education programs, audit and feedback, and decision support feature prominently, evidence appears stronger and impact seems greater for strategies directed to, or mediated by, patients.5 Framing low value care as a health hazard for patients Although clinicians accept responsibility for resource stewardship, they also believe their primary care obligation is to the individual patient, with costs being a secondary consideration.6 Most patients hold similar views, until out‐of‐pocket expenses become unaffordable.7 Reframing low value care as having negative consequences, not just “worth a go” or “better safe than sorry”, may incentivise patients, clinicians and policymakers to engage more in mitigation efforts.8 Negative consequences can arise directly from an episode of low value care, or indirectly from subsequent downstream care cascades, such as invasively investigating incidental but benign findings from a previous unnecessary investigation. Harms can be physical, psychological, social, financial and relational (mistrust). Even providing potentially beneficial care to patients who do not want it can cause harm, at least psychologically. Moreover, giving low value care to one individual may result in delayed delivery of high value care to another individual, who may then suffer preventable harm. The burden of negative consequences Recent studies have begun to quantify the negative consequences of different forms of low value care. A review of 54 case descriptions of 63 overused services revealed an average of 3.2 negative consequences per case, most (33/54, 61%) featuring an overuse cascade feedback loop.9 Reported harms (91 in total) comprised injury (69%), psychological harm (16%), treatment burden (9%), financial loss (3%), and dissatisfaction (2%).9 Recent care cascades were reported by 374 internists in the United States following incidental findings from tests that a third deemed clinically inappropriate but which led to a new invasive test (77.2% of instances), an emergency department visit (54.8%), or hospitalisation (50.6%).10 These caused patients physical (15.6%) or psychological harm (68.4%), financial loss (57.5%), social disruptions (8.7%), and dissatisfaction (27.6%).10 Seven low value procedures characterised 9330 admissions to 225 Australian hospitals, including endoscopy for dyspepsia or colonoscopy for constipation in young people, knee arthroscopy for osteoarthritis or meniscal tears, and spinal fusion for uncomplicated low back pain.11 Between 0.2% and 15.0% of patients, depending on the procedure, developed one or more hospital‐acquired complications, most commonly infection (26.3% of instances), with a twofold or more increase in the median length of stay.11 Among 72 unnecessary admissions to one US hospital of low risk syncope patients, one in eight had an adverse event from tests and treatments.12 In a study of 405 695 individuals with new onset, non‐specific low back pain, those receiving lumbar spine magnetic resonance imaging (MRI) within 6 weeks, compared with matched controls without an early MRI, incurred significantly more surgery (1.48% v 0.12%), greater opioid use (35.1% v 28.6%), and worse pain scores (3.99 v 3.87).13Among 5057 individuals with incidentally detected lung nodules on chest x‐rays, those receiving intense diagnostic investigation versus guideline‐concordant care had more procedure‐related adverse events (8.1% absolute increase) and more radiation exposure, with no higher incidence of advanced cancer at 2 years’ follow‐up.14 In a study of 1488 hospitalised patients who received antibiotics for at least 24 hours, 287 (19%) of the antibiotic regimens were not indicated (eg, asymptomatic bacteriuria, aspiration pneumonitis, congestive heart failure), with 56 (20%) being associated with an adverse drug event, including seven cases of Clostridium difficile infection.15 Adding aspirin with no clear indication to 1107 of 3280 patients (33.8%) prescribed direct oral anticoagulants (DOACs) for confirmed indications was associated with more bleeding events (31.6 v 26.0 bleeding events per 100 patient years) and hospitalisations (9.1 v 6.5) than matched controls receiving direct oral anticoagulants only.16 The role of patients in reducing low value care While clinicians often complain of patients demanding inappropriate care,7 many patients perceive the negative consequences of overuse,17 and interventions that empower patients to challenge such overuse are effective in decreasing it by 25–40%.18 In a review of 22 studies, 19 (86%) reported significant reductions in unnecessary use of antibiotics and benzodiazepines, Caesarean deliveries, elective labour inductions, surgery for knee and hip osteoarthritis, non‐beneficial intensive care treatments, computed tomography scans for mild head injury in children, cardiac stress testing in low risk adults, and routine screening tests (full blood counts, electrocardiograms).18 These empowerment interventions comprised patient‐oriented educational materials and shared decision‐making protocols, the latter having greater effect. In another study, encouraging patients to identify their health concerns before a clinical encounter, and increasing their knowledge about their condition and care options, also rendered clinician advice more concordant with best practice by 33–60%.19 However, successful engagement depends on several factors: motivation and ability of clinicians to engage patients in decision making; clinician knowledge of, and agreement with, what constitutes low value care; the clinical context; and availability of decision support resources for both parties within clinical workflows. Clinicians do not always attempt to facilitate patient involvement and may not adjust care to patient preferences.20 Such engagement is time‐consuming for clinicians and inadequately remunerated, impractical in emergency situations or for patients unable or unwilling to engage, and may incite patient anxiety or dissuade them from further consultations. In response, evidence‐based strategies can overcome these barriers21 and reinforce patient perceptions of receiving optimal care and their desire to reconsult. More research needs to define the most effective mix of techniques for supporting patient engagement (eg, educating clinicians on communication techniques, deploying multidisciplinary teams, using trained decision coaches and patient decision aids), and their effects on consultation time and costs.22 Whether such engagement, by specifically reducing low value care, actually improves patient health remains uncertain, although its absence predisposes to worse clinical outcomes, lower quality care and increased health care utilisation.23 Empowering patients to engage in reducing low value care Many patients refrain from participating in discussions aimed at avoiding overuse because of a power asymmetry wherein they sense the need to seek clinician permission to discuss their options, feel they have insufficient knowledge to ask pertinent questions or understand the jargon (“doctor knows best”), and fear repercussions from being seen to challenge clinician credibility (desire to be a good patient). Alternatively, patients may want to avoid responsibility for making a wrong decision they will later regret, or feel unable to participate because of illness symptoms, cognitive impairment, language or cultural barriers, or need for emergency or intensive care.17 Nevertheless, clinicians must avoid making false assumptions about how much a patient desires involvement in decision making. Methods are needed for identifying which patients, encounters and clinicians need more support to enact the most appropriate form of shared decision making. Patients usually desire a more active role when the matter is serious, invasive interventions are being considered, or if significant out‐of‐pocket costs, lengthy time off work, or interruptions to social activities may be incurred. Younger patients, women and those with higher educational and socio‐economic status are more likely to participate.24 Greater engagement and less overuse are seen within long term clinician–patient relationships characterised by mutual trust and continuity of care,25 and where public messaging within practice environments encourages and legitimates engagement.26 Patients can be trained to ask questions, and adult learning programs can assist those with low health literacy.27 Choosing Wisely Australia (www.choosingwisely.org.au) and other organisations28 provide conversation starter patient resources; other sources provide topic‐specific lists of questions (eg, www.prosdex.com for prostate‐specific cancer antigen testing, and www.bresdex.com for breast cancer surgery). Decision aids, option grids and fact boxes can also assist. As a minimum, patients should be encouraged to ask these questions: Is there a decision we need to make? In urgent situations, clinicians may need to reach out and not wait for patients to ask. What are my options? All clinically viable options should be presented, including doing nothing. What are potential benefits and harms of each option? Where possible, these should be expressed using natural numbers (eg, four out of 100 people like you will experience a stroke every year; this treatment will reduce that to two out of 100, although one person of 100 will have a significant bleeding event). How will each option affect me in terms of what I consider important? Patients may want to know costs involved, duration of inability to work or perform social activities, skill and place of those performing a procedure. Consumer organisations should be resourced to run community education campaigns focused on engagement, while clinicians must be educated about the benefits of patient engagement and receive the tools, time and remuneration to support it within busy work schedules. Conclusion Efforts to increase patient empowerment in decision making should be seen as foundational for reducing low value care, and should underpin all other strategies targeting clinicians, payers and policymakers.

Ian A Scott · Adam G Elshaug · Melissa Fox

Mja2 51168

An Australian glossary to aid multisectoral research and collaborations to address health and climate change

A shared language will promote climate change and health research and underpin a sustainable future Climate change requires collective action across many government, non‐government and private sectors.1 The development of a shared terminology to conduct, share and use research will be critical to the effective communication and collaboration needed to achieve this collective action.2 At the same time, climate change mitigation and adaptation is an exponentially growing field of multidisciplinary research and practice, augmenting the scale of the challenge.3,4 It will be vital that this cross‐disciplinary research effort is supported, but currently, there is poor alignment in the use of relevant terms across different research and policy fields, with little standardisation of terminology in the national and international literature. This article builds on other international efforts to address the need for shared terminology. A 2018 article provides definitions for the fields linking human health to ecosystems and environments and highlights planetary health.5 Another publication defines key terms that focus on vulnerability assessments and health equity implications.6 Leading international organisations, including the Intergovernmental Panel on Climate Change (IPCC)7 and the World Health Organization,8 have developed glossaries relevant to climate change and health. However, many terms require refinement for the Australian context. In an Australian collaborative endeavour, we developed an Australia-specific glossary of 55 terms that we believe are key to enhancing local intersectoral communication and collaboration on climate change and health.9 The methods included a systematic search and review of existing glossaries relevant to climate change and health, plus three rounds of stakeholder engagement including an online survey, a workshop and further discussion via a shared online document (Supporting Information). The glossary’s target audiences are researchers from various disciplines needing to collaborate to address health and climate change, and partners who need to understand and use that research to drive change (eg, government, policy, private sector, and otherdecision makers). We acknowledge that the language and priority issues in health and climate change will continue to evolve, and welcome contributions from other stakeholders to further develop and refine the terminology in the glossary. The need for multidisciplinary collaboration on health and climate change issues in Australia is reflected in the recent National Health and Medical Research Council’s Special Initiative in Human Health and Environmental Change.10 This initiative will support a multidisciplinary, collaborative network of researchers across Australia. It is hoped that this glossary could assist multisectoral collaborations. Key terms This section outlines and discusses some of the essential principles, considerations and challenges identified in developing the glossary and illustrates these with some of the most debated key terms. Notably, several definitions integrated Aboriginal and Torres Strait Islander perspectives. We included the term “Indigenous knowledges” for its Australian relevance and its importance in sustaining and caring for the land on which we live. Furthermore, we applied an eco‐social interpretation of health and climate change relationships, recognising that human and environmental health are inextricably linked. We amended several pre‐existing definitions to include considerations of other sentient beings and ecosystems. Components of climate change Challenges in defining climate‐related terms are illustrated by the definitions of climate change from the IPCC and the United Nations Framework Convention on Climate Change (UNFCCC).7,11 Despite both being derived for United Nations processes, there are stark differences. Both refer to two components of the changing climate: anthropogenic climate change (human component) and natural variability in the Earth’s climate. While the IPCC distinguishes between these in their climate change definition, the UNFCCC has split them into separate terms: “climate change” (anthropogenic causes) and “climate variability” (natural causes). Our stakeholders recommended distinguishing between the two components and explicitly stating the existential threat of climate change to create a greater sense of urgency, and also chose “health emergency” to urge immediate action as many Australian health and medical professional organisations (eg, the Australian Medical Association12 and the Royal Australasian College of Physicians13) have declared climate change a health emergency. Equity and justice Previous definitions for “climate equity” and “climate justice” appear to be human‐centric. Our proposed definitions for climate justice and climate equity are broader, to capture the links between human health and other species and ecological systems. In Australia, the destruction of biodiversity, wetlands, mangrove swamps, and rainforests is an indiscriminate loss of sensitive ecological systems and a form of injustice. There is an even more expansive notion of climate justice which includes attention to inequity in impacts, to participation and procedural justice, and to the functioning and provision of basic needs of vulnerable communities.14 Related to climate justice is “just transition”. A policy report by the Australian Council of Trade Unions15 notes that a just transition should ensure that communities facing transitions can flourish rather than simply survive. We amended a pre‐existing definition to explicitly state that transition should be towards sustainable economic systems that promote social justice. It is also important to acknowledge Aboriginal and Torres Strait Islander perspectives for just transitions, and that Aboriginal and Torres Strait Islander peoples be at the centre of decision making to ensure that environmental stewardship is promoted.16 Anxiety, grief and solastalgia Climate change is adversely affecting mental health, with visible impacts and increasing trauma from extreme weather events (eg, Australia’s unprecedented 2019–20 bushfire season). Terms that acknowledge and highlight the psychosocial and emotional harms of climate change include “climate anxiety/grief” and “solastalgia”, coined by Australian environmental philosopher Glenn Albrecht.17 This is especially relevant to Aboriginal and Torres Strait Islander peoples.18 Our climate anxiety/grief definition explicitly states the anxiety felt around losses for future generations. We also recognise that different generations may have varying baselines for how they think of climate change. Fires There are many variations in terminology used around fires, particularly international definitions, which may cause misunderstanding and inappropriate use of some terms in the context of climate change. In Australia, the term “bushfire” is very widely used and is therefore the term included in our glossary. The management of fires in Australia involves burning, often referred to as “hazard reduction burning”, which itself carries fire‐related health risks and consequences. In Australia, “cultural burning” describes burning practices developed by Aboriginal and Torres Strait Islander peoples to enhance the health of the land and its people.19 A commonly confused fire‐related term is “fire disasters”, which is often misused when discussing fires in Australia integral to ecosystem functioning and not classified as disasters; for example, annual savanna fires, which are part of the seasonal cycle of those ecosystems involved. A bushfire is classified as a disaster when it is uncontrollable and adversely affects lives, properties or the environment. Heat In Australia, extreme heat events have claimed more lives than all other extreme weather events combined.20 Many ways of defining “heatwave” exist in global and Australian contexts, with variations across sectors and regions. It is generally agreed that heatwaves are prolonged periods of excessive heat, with “prolonged” usually defined as multiple consecutive days and “excessive” being the exceedance of an extreme threshold. Our stakeholders decided to include a detailed definition from the Bureau of Meteorology21 which also considers overnight temperatures. High night‐time temperatures affect health and wellbeing by limiting respite from heat and reducing sleep quality, with relevance for a health‐focused glossary. Responses Actions, strategies and interventions to address the health impacts of climate change fall into either adaptation or mitigation categories.6 Mitigation aims to reduce the human contribution to climate change, and adaptation is a process or strategy to manage the inevitable changes that are already beginning to occur.7 The IPCC definition of maladaptation was selected and adapted for our glossary because it allows for flexible interpretations across sectors. Our version of the IPCC definition recognises that “maladaptation” refers to the situation where an adaptation strategy causes unintended consequences. For example, one proposed strategy for bushfires is to remove bush, but this was based on a flawed argument that less bush equates to fewer bushfires. The resulting loss of biodiversity from this strategy would be an unintended consequence and thus a maladaptation. Resilience Although not commonly used in Australia at present, the term “climate resilience” is widely used internationally and has growing relevance here. Climate resilience in the Australian context involves considering how communities have responded to and recovered from past natural disasters to improve their resilience for future events. Hence, our glossary’s definition builds on the IPCC’s definition to focus on strengthening for future events7 and explicitly mentions political and governance systems’ capacity to cope with future perilous events. Indigenous knowledges The United Nations Educational, Scientific and Cultural Organization (UNESCO) and IPCC definitions of Indigenous knowledges7,22 refer broadly to all First Nations peoples’ knowledge systems. We could not identify an existing definition of Indigenous knowledges for the Australian context, an important topic for further development. When referring to Indigenous knowledges in Australia, it is appropriate to refer to these knowledge systems as Aboriginal and Torres Strait Islander knowledges.23 The international definition also lacks the important spiritual and cultural aspects of Indigenous knowledges and the fact that these knowledge systems have been passed down over many thousands of years and underpin Indigenous peoples’ understandings today. Aboriginal and Torres Strait Islander knowledges include an intricate understanding and connection to Country, developed over thousands of years to care for the environment sustainably. Caring for Country, which embodies set stewardship values for land and sea environments, describes these sustainable land management practices, as well as being a key aspect in the continuation of Aboriginal and Torres Strait Islander cultures.19 Conclusion The glossary is now publicly available. We hope that policymakers, researchers and stakeholders from different sectors will refer to the glossary to facilitate their discussions and help translate research into policies and practices. Given that language is continuously evolving, as are health and climate change issues, we acknowledge the limitations in the perspectives presented in the glossary and invite contributions from various stakeholders to make this glossary a dynamic and useful tool. By doing this, we can build a shared language to underpin a just transition to a sustainable future for our country.

Matilde Breth‐Petersen · Lucie Rychetnik · Alexandra L Barratt · Ying Zhang

Mja2 51161

Communicating with patients and the public about COVID‐19 vaccine safety: recommendations from the Collaboration on Social Science and Immunisation

Understanding the mental shortcuts people make and the values they bring to weighing risks is critical to informing effective risk communication

Julie Leask · Samantha J Carlson · Katie Attwell · Katrina K Clark · Jessica Kaufman · Catherine Hughes · Jane Frawley · Patrick Cashman · Holly Seal · Kerrie Wiley · Katarzyna Bolsewicz · Maryke Steffens · Margie H Danchin

Mja2 51136

Time for universal hepatitis B screening for Australian adults

Risk‐based testing is failing a third of people living with chronic hepatitis B in Australia The United States Preventive Services Task Force recently issued new guidance that all adults aged 18–79 years should be offered screening for hepatitis C virus infection,1 expanding on prior risk‐ and age‐based recommendations. The rationale is that hepatitis C virus infection is a common condition (estimated 1% prevalence) that is leading to an increasing burden of disease from cirrhosis and liver cancer, it is easy to test for, there are well tolerated and highly effective treatments available, and treatment costs have dropped substantially in the past 5 years. The guidance acknowledges that risk‐based screening has been insufficient in increasing the number of people diagnosed and able to access treatment, and further change is needed to address the ongoing burden of adverse outcomes. In Australia, an estimated 80% of people living with hepatitis C have been diagnosed,2 and treatment uptake is among the highest in the world; however, progress in diagnosing people living with chronic hepatitis B is much less impressive. We argue that Australian guidelines for hepatitis B screening should be similarly changed and expand from a risk‐based approach to a more universal one. Hepatitis B is a condition that affects more than 225 000 Australians,3 and when untreated, it leads to serious adverse outcomes such as liver cirrhosis and cancer in up to one‐quarter of people affected despite being generally asymptomatic.4 Infant vaccination in Australia since 2000 has reduced local transmission,3 but hepatitis B is most commonly acquired at birth or in early childhood when there has been inadequate access to vaccination, and it disproportionately affects Australians born overseas.2 While a cure is not yet available, highly effective antiviral treatments can be accessed through Medicare which have been shown to reduce liver cancer risk by up to 70% within 5 years.5 Based on this evidence, treatment for hepatitis B is recommended in national and international guidelines when there is either cirrhosis or ongoing liver inflammation to reduce morbidity and mortality associated with hepatitis B virus infection. Australia’s National Strategy for Hepatitis B sets the target of 80% of people diagnosed by 2022, but this proportion has barely improved in recent years, from 63% in 2011 to 69% in 2018.3 Although about 6000 people6 are newly diagnosed with hepatitis B each year, the number of people living with hepatitis B in Australia has continued to increase due to the addition of people who acquired the disease in their country of birth (Box).7 This leaves an estimated 71 000 Australians (plausible range, 32 000–93 000) undiagnosed and at risk of significant adverse outcomes. As this estimate is reliant on underlying model estimates — incorporating data on migration, natural history, immunisation and transmission7 — these data are subject to uncertainty. However, even accounting for this uncertainty, it is estimated that there is only a 4.6% chance that Australia will reach the 2022 target of 80% of cases diagnosed.3 The late diagnosis of hepatitis B in an individual is a missed opportunity for that person to receive appropriate care, including antiviral treatment to prevent liver cancer and cirrhosis.5 In New South Wales in 2011–2012, 29% of people diagnosed with hepatitis B‐related liver cancer were diagnosed late (< 2 years before their cancer diagnosis).8 Failure to diagnose not only affects the individual but is a missed opportunity for family members to be appropriately screened and receive vaccination to prevent transmission of hepatitis B within households. Data indicate only a third of people requiring antivirals to prevent liver cancer or cirrhosis are currently receiving them in Australia.7 Increasing the percentage of people receiving treatment to 20%, as per the National Strategy target, would prevent an estimated 1700 deaths by 2030.7 Improving diagnosis is key to meeting these treatment targets. For over 25 years, the diagnosis of most people affected by hepatitis B in Australia has relied on risk group‐based screening. The National Hepatitis B Testing Policy lists 16 indications and 13 risk groups that should be considered for testing. Universal screening is only recommended during antenatal care, and a substantial proportion of women are first diagnosed with hepatitis B at this time. For clinicians, conducting a guideline‐based ascertainment of risk is complex, requiring knowledge of country of birth; Indigenous status; history of travel, vaccination, incarceration, and medical procedures; occupation; sexual activity; family history; and previous or current injecting drug use. There is limited evidence regarding the acceptability and uptake of these recommendations, but research assessing general practitioner attitudes to hepatitis B has identified discomfort with profiling patients based on cultural background.9 A study of GPs identified that 33% were not aware people from these communities are the main at‐risk population for hepatitis B, and 67% agreed that assistance with identifying patients who should be tested was needed.10 This targeted approach to testing can also contribute to the experience of stigma and discrimination among people affected by or at risk of hepatitis B, particularly given the structural and health care inequalities experienced by many members of these groups. Chronic hepatitis B meets all the World Health Organization criteria for disease screening:11 it is an important health problem for the person and the community; highly accurate diagnostic tests are available; there is typically a long asymptomatic period of infection; treatments are available and they are more effective when started earlier in the course of the disease; and based on cost‐effectiveness studies, the cost of diagnosis and treatment is economically balanced in relation to health care costs as a whole. A further advantage with hepatitis B is that, given the availability of a highly effective vaccine and the generally lifelong nature of infection, screening will usually only need to be done once. Subsequently, one‐time screening will simplify patient engagement in regular follow‐up and monitoring, with most needing annual recall for reimbursed blood tests and liver ultrasounds (for Medicare‐eligible people, the majority of Australians living with hepatitis B). Community engagement strategies including community codesigned and place‐based outreach programs will also be essential. Although some hepatitis B community outreach occurs in Australia, it is profoundly underfunded compared with other community programs such as those for the human immunodeficiency virus (HIV), and increased investment will be central to supporting a more universal testing approach. The prevalence at which hepatitis B screening is cost‐effective has been estimated at 0.3%12 (United States) and 0.41%13 (the Netherlands), well below Australia’s estimated prevalence of 1%.7 Although further study is needed to assess local cost‐effectiveness of screening, the management and treatment of people diagnosed with hepatitis B has been found to be cost‐effective in Australia. A 2009 study found that appropriate treatment was not only cost‐effective but more so than many currently existing population‐based cancer prevention programs.14 More recent research has also suggested that improving the hepatitis B cascade of care in Australia is cost‐effective.15 The current risk‐based screening approach for hepatitis B in Australia has failed to meaningfully increase the proportion of people diagnosed with this disease in the past decade, and we argue that it is time for a radical rethinking of our approach to testing for hepatitis B. Although difficult to quantify due to crossover in populations, given the breadth of the existing screening criteria — including all women who have been pregnant in the screening era (3.5 million Australians), all migrants from countries with more than 2% prevalence (2.1 million), all Aboriginal or Torres Strait Islander people (850 000), all adults at higher risk of infection (1.4 million), and any person with existing liver disease (over 5 million) — it is likely that most of Australian adults meet least one screening criteria, and a universal approach would represent a relatively small expansion in the total number eligible. We believe that guidelines should now recommend that all Australians aged 20–79 years whose hepatitis B status has not been documented should be offered testing. This minimum age coincides with the enactment of universal hepatitis B vaccination in Australia, which led to a substantial reduction in prevalence. However, screening would still be required in cases where a child was born overseas or was born in Australia to a mother living with hepatitis B. The upper age limit for offering testing may not reach cost‐effectiveness thresholds; however, this has not been locally established and there is evidence that older Australians have a considerable burden of hepatitis B6 and liver disease.7 Offering testing should always be conducted within the context of informed consent,16 and given most tests currently take place in primary care settings, GPs should be supported to incorporate hepatitis B screening into standard preventive health care for all adults.2 In line with Australia’s historical approach to blood‐borne virus responses, involvement of community and professional organisations and people with lived experience should be central to implementation. There is a need to change the way we approach testing for hepatitis B in Australia as we fail to meet both interim and longer term targets.7 Innovation and simplification of our testing policy are necessary to reach people unaware of their risk, encourage clinicians to test, and reduce stigma and discrimination associated with questioning people about risk factors. This approach would help integrate routine hepatitis B screening and care into primary care. A fundamental change is needed if Australia is to meet our National Strategy targets for 2022 and the WHO elimination targets for 2030. Importantly, it would allow the more than 70 000 Australians with undiagnosed hepatitis B7 to be informed about their condition and to enable them to access care and potentially life‐saving treatment. To not do so will further entrench the status quo and the ongoing preventable morbidity and mortality associated with late diagnosis of hepatitis B.7,8 Box – Trends in chronic hepatitis B diagnosis in Australia during 2010–2019, incorporating modelled estimates of diagnosed and undiagnosed population (area) and annual surveillance notifications of newly diagnosed cases (line) Modelled data sourced from previously published work.7 Annual number of notified cases sourced from the Australian Government Department of Health National Notifiable Diseases Surveillance System.6

Nicole L Allard · Jennifer H MacLachlan · Lien Tran · Nafisa Yussf · Benjamin C Cowie

Mja2 51114

Influenza disease and vaccination in children in Australia

Influenza vaccine uptake in children has grown in response to increased awareness and progressive expansion of funding Over the past decade, multiple initiatives have been implemented to strengthen influenza vaccination programs in Australia, with an increasing focus on children. In this article, we review these changes, the events that prompted them, and how they have influenced influenza vaccine uptake in Australia. Burden of influenza Before the coronavirus disease 2019 (COVID‐19) pandemic, influenza was responsible for a higher disease burden and overall health impact than any other vaccine‐preventable disease in Australia.1 Historically, Australian influenza notification rates have been highest in children, particularly in those aged less than 2 years.2 The highest annual hospitalisation rates for influenza overall have been recorded in children aged less than 6 months (192 per 100 000 per year), followed by children aged 6–23 months (109 per 100 000 per year).2 Although paediatric hospitalisation rates are high, annual rates of influenza‐associated deaths in children are low compared with adults: 0.20–0.39 per 100 000 children aged under 5 years compared with 0.65 per 100 000 in people aged 65–74 years and 3.66 per 100 000 in people aged 75 years or more.2 While it appears that influenza may have become more burdensome for children in recent years due to an increase in disease notifications (Box 1), the notification rates also reflect an increase in influenza testing rates. For example, in New South Wales, there was a seven‐fold increase in tests done in 2019 compared with 2009.3 However, influenza notifications dramatically declined in 2020 in all age groups (Box 1), most likely due to increased hygiene and physical distancing measures and the implementation of border closures to reduce transmission of severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) — the virus that causes COVID‐19. Influenza‐associated morbidity and mortality rates also likely underestimate the true influenza‐associated burden related to underascertainment bias and other factors. Influenza vaccination recommendations and funding All people in Australia aged 6 months or more are recommended to receive annual influenza vaccination, with free influenza vaccines for the highest risk groups provided by the National Immunisation Program (NIP).4 Vaccination is only contraindicated for people who have experienced anaphylaxis in association with a previous dose or any component of an influenza vaccine.4 Children aged 6 months to 9 years receiving the vaccine for the first time require two doses at least 4 weeks apart; those aged 9 years or more require only one dose in their first year of receipt.4 Until recently, there was limited funding for, and promotion of, influenza vaccination in children. In 2018, following the large 2017 influenza season (Box 1), and underpinned by evidence of paediatric disease burden, vaccine safety and efficacy,2,6,7 all Australian states and territories, except the Northern Territory, followed Western Australia’s 2008 initiative in funding influenza vaccination for all children aged 6–59 months; the NT followed in 2019 (Box 2). The NIP expanded in 2019 to include Aboriginal and Torres Strait Islander peoples of all ages (closing the funding gap for those aged 5 to < 15 years), and in 2020, the influenza vaccine was added to the NIP for all children aged 6–59 months.5 Influenza vaccine effectiveness Influenza vaccine effectiveness is usually measured against either all laboratory‐confirmed influenza (using disease notification data) or influenza‐associated hospitalisation (a proxy for severe disease) and varies each year. In 2015, influenza vaccine effectiveness in children aged under 18 years estimated from data collected from sentinel general practitioner networks was 54%,8 indicating that influenza‐associated primary care visits more than halved in vaccinated children compared with unvaccinated children. In 2017, a year dominated by the influenza A subtype H3N2, for which the vaccine typically performs less well, the influenza vaccine effectiveness against hospitalisation for influenza was estimated to be 30% in children;6 however, in 2018, an influenza A subtype H1N1 predominant year, vaccine effectiveness against paediatric influenza hospitalisation was 78%.9 Despite moderate effectiveness, at an individual and population level, influenza vaccination still prevents significant morbidity and mortality. For example, with 55% of population coverage and an adjusted vaccine effectiveness of only 32% (95% CI, 16–44%) for children aged 5–17 years during the 2017–2018 influenza season in the United States, vaccination was still estimated to have prevented 1.4 million illnesses, 711 000 medical visits, 3700 hospitalisations, and 89 deaths of children aged 5–17 years.10 Influenza vaccine safety In April 2010, early in the Australian influenza vaccination season, the Australian Government’s Chief Medical Officer suspended the use of influenza vaccine in children aged 5 years or less due to an unexpectedly high rate of fever and febrile seizures in the 4–24 hours following influenza vaccine administration.11 Influenza vaccination in children aged 5 years or less continued with non‐CSL influenza vaccines from August 2010 onwards,12 given they had no safety issues. The program suspension had negative effects on influenza vaccine attitudes, confidence and coverage in children in the following years.13 However, recent evidence suggests that influenza vaccine safety concerns may no longer be a significant barrier to influenza vaccination of children in Australia. Rather, significant barriers include a lack of recommendation from a health care provider, difficulties in either remembering to make or getting an appointment for vaccination, a general lack of support for influenza vaccination, or a lack of history of influenza vaccine uptake by the child or their parent.14 An independent review into the national response to the Fluvax (CSL) safety incident identified ways to strengthen the safe delivery of influenza (and other) vaccines in Australia.15 In response to these recommendations, a national sentinel vaccine active safety surveillance system, known as AusVaxSafety (www.ausvaxsafety.org.au) was established in 2014. In this system, people of all ages who receive an influenza vaccine (or their carers) at more than 350 participating sentinel clinics (as at March 2021) are sent a short message service (SMS) text message and/or email in the days after vaccination with questions on whether they or their child experienced an adverse event following immunisation.7 Overall, data from this system have shown a safety profile consistent with that expected from clinical trials for all vaccine brands: approximately 10% of children’s carers report an adverse event following immunisation in their child within 3 days of influenza vaccination, the most common being fever or pain, swelling or redness at the injection site.7 Data from this ever‐expanding vaccine safety monitoring system have consistently shown low and expected reporting rates of mild transient adverse events known to be associated with the influenza vaccine. Recorded influenza vaccine uptake Since 2007, the number of influenza vaccine doses distributed and the recorded population coverage have increased in Australia, but with fluctuating uptake in children. Following the rapid attainment of high coverage in Western Australia in both Aboriginal and Torres Strait Islander and non‐Aboriginal children aged 6–59 months from 2008, coverage decreased substantially after the 2010 safety incident (Box 3 and Box 4). Coverage in Aboriginal and Torres Strait Islander children increased after the NIP funding in 2015, with highest rates in the NT (55.8%) in 2015 (Box 3). Coverage also increased dramatically in non‐Aboriginal children in 2018 (Box 4) following the introduction of state‐ and territory‐based programs for all children aged 6–59 months. In 2020, the first year of NIP‐funding for children aged 6–59 months, the reported uptake was 43.9%.16 This estimate may be higher given the uptake was calculated using doses recorded between March and August 2020 (rather than a full 12‐month period),16 and overall, actual coverage is likely higher due to issues of under‐reporting to the Australian Immunisation Register.17 The number of influenza vaccine doses available around Australia for all ages has also increased, with 8.3 million distributed in 2017, to 18 million in 2020.18 While a 43.9% uptake in children aged 6–59 months in 2020 in Australia represents an improvement from past low vaccination rates, Australia needs strategies to improve and sustain high coverage. These could include personalised vaccination reminders19 and provision of greater access to influenza vaccination services.20 Furthermore, given the influence of a recommendation from a health care provider on vaccine uptake,14 implementing a combination of education, communication training, electronic prompts and standing order protocols21 may assist health care providers in recommending influenza vaccination to all patients. Mandatory reporting of vaccination data to the Australian Immunisation Register, recently implemented in the context of the COVID‐19 vaccine roll‐out in Australia and extended to include other vaccines,22 should also assist in ensuring more accurate vaccine coverage estimations of influenza and all vaccines. Conclusion Influenza vaccine uptake in young children in Australia has increased in response to the progressive expansion of funding and is now delivered under the NIP. Further gains in uptake should ensure that protection against influenza disease in children is optimised during the ongoing COVID‐19 pandemic and in years to come. Box 1 – Notification rates of laboratory‐confirmed influenza in children aged less than 5 years in Australia, 2007–2020* * Influenza testing rates also increased over this time period.3 Source: National Notifiable Diseases Surveillance System, as at 18 February 2021. Box 2 – Significant events in influenza disease and vaccination policy in Australia ACT = Australian Capital Territory; NSW = New South Wales; NT = Northern Territory; QLD = Queensland; SA = South Australia; TAS = Tasmania; VIC = Victoria; WA = Western Australia; QIV = quadrivalent influenza vaccine. * Vaccine funded for Aboriginal and Torres Strait Islander people aged 15 years or more since 1999 (for all Aboriginal and Torres Strait Islander people aged ≥ 50 years, and Aboriginal and Torres Strait Islander people aged 15–49 years who have at least one of a range of underlying medical conditions that increase their risk of influenza or complications). Source: National Centre for Immunisation Research and Surveillance.5 Box 3 – Trends in recorded coverage of any dose of seasonal influenza vaccine among Aboriginal and Torres Strait Islander children aged 6 months to less than 5 years, by jurisdiction, 2007–2019 ACT = Australian Capital Territory; NSW = New South Wales; NT = Northern Territory; QLD = Queensland; SA = South Australia; TAS = Tasmania; VIC = Victoria; WA = Western Australia. Source: Australian Immunisation Register, data as at 31 March 2020. Box 4 – Trends in recorded coverage of any dose of seasonal influenza vaccine among non‐Aboriginal children aged 6 months to less than 5 years, by jurisdiction, 2007–2019 ACT = Australian Capital Territory; NSW = New South Wales; NT = Northern Territory; QLD = Queensland; SA = South Australia; TAS = Tasmania; VIC = Victoria; WA = Western Australia. Source: Australian Immunisation Register, data as at 31 March 2020.

Samantha J Carlson · Christopher C Blyth · Frank H Beard · Alexandra J Hendry · Allen C Cheng · Helen E Quinn · Julie Leask · Kristine Macartney

Mja2 51100

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