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Tier 1 - Health status and outcomes

1.08 Cancer

Key facts

Why is it important?

Cancer is a group of diseases in which abnormal cells proliferate and spread. These cells can form a malignant tumour that can invade and damage the surrounding area and spread (metastasise) to other parts of the body through the bloodstream or the lymphatic system. If the spread of these tumours is not controlled, it can cause death. The effectiveness of treatment and survival rates can vary between different cancers and patients (AIHW 2019).

While the causes of many cancers are not fully understood, there are some known risk factors, some of which may be modifiable and some which are not. These risk factors include biomedical factors (for example genetic susceptibility and hormonal factors), behavioural factors (for example smoking, alcohol consumption and poor diet) and environmental factors (for example sunlight and radiation) (AIHW 2019).

Aboriginal and Torres Strait Islander people have high rates of the behavioural risk factors, including smoking, risky drinking and poor diet which contribute to high fatality cancers (AIHW 2018; Condon et al. 2003). Indigenous Australians have a higher incidence of fatal, screen-detectable and preventable cancers and are more likely to be diagnosed at more advanced stages, often with comorbidities that are more complex (Cunningham et al. 2008). For more on cancer screening, see measure 3.04 Early detection and early treatment. Compared with non-Indigenous Australians diagnosed with the same cancer, Indigenous Australians are disadvantaged because they are usually diagnosed later with more advanced disease, are less likely to have treatment, and often have to wait longer for surgery than non-Indigenous patients (Hall et al. 2004; Valery et al. 2006).

Burden of disease

In 2018, cancer and other neoplasms accounted for 10% of the total disease burden among Indigenous Australians and was the fourth leading cause of burden for Indigenous males (9.8%) and the second leading cause for Indigenous females (10%). Most of the burden due to cancer and other neoplasms was due to premature death (fatal burden) (94%). Cancer and other neoplasms accounted for one-fifth (20%) of the total fatal burden for Indigenous Australians.

Lung (25%), mouth & pharyngeal (10%), bowel (8%) and liver (7%) cancers accounted for half (50%) of the burden due to cancer and other neoplasms among Indigenous Australians. These may be linked to smoking, risky alcohol consumption and higher levels of chronic infections. In 2018, 37% of the burden due to cancer among Indigenous Australians was attributed to tobacco use, and 9.2% to alcohol use.

After adjusting for differences in the age-structure between the two populations the rate of burden due to cancer and other neoplasms for Indigenous Australians was 1.7 that of non-Indigenous Australians (50 and 30 DALY per 1,000 people, respectively). Cancer and other neoplasms was responsible for 9.1% of the total gap between Indigenous and non-Indigenous Australians (AIHW 2022).

Findings

What does the data tell us?

In the period 2011–2015, there were 6,925 cases of cancer diagnosed in Indigenous Australians. After adjusting for differences in the age structure between the two populations, cancer incidence was higher for Indigenous Australians (495 per 100,000) than for non‑Indigenous Australians (472 per 100,000), in the four jurisdictions pooled for analysis (New South Wales, Queensland, Western Australia and the Northern Territory).

The rate of cancer incidence for Indigenous Australians was highest for prostate cancer (males only, 111 per 100,000; 575 cases), breast cancer (females only, 97 per 100,000; 810 cases) lung cancer (total persons, 84 per 100,000; 1,040 cases) and colorectal cancer (total persons, 48 per 100,000; 613 cases).

Indigenous Australians were 1.9 times as likely to have lung cancer as non-Indigenous Australians (84 and 43 per 100,000, respectively) and 2.2 times as likely to have liver cancer (16 and 7 per 100,000, respectively). Indigenous females were 1.7 times as likely as non-Indigenous females to have uterine cancer (28 and 17 per 100,000, respectively) and 2.1 times as likely to have cervical cancer (14 and 7 per 100,000, respectively). The rate for prostate cancer was 26% lower for Indigenous than for non-Indigenous males (111 and 149 per 100,000, respectively) (Table D1.08.1, Figure 1.08.1).

Figure 1.08.1: Age-standardised incidence of selected cancers, by Indigenous status, NSW, Qld, WA and the NT combined, 2011–2015

This bar chart shows that, for Indigenous Australians the incidence rate of selected combined cancers was 495 per 100,000, and 472 per 100,000 for non-Indigenous Australians. The top 4 cancers were prostate cancer (111 per 100,000 for Indigenous males and 149 per 100,000 for non-Indigenous males), female breast cancer (97 per 100,000 for Indigenous females and 119 per 100,000 for non-Indigenous Australians), lung cancer (84 per 100,000 per 100,000 for Indigenous Australians and 43 per 100,000 for non-Indigenous Australians), and bowel cancer (48 per 100,000 for Indigenous Australians and 56 per 100,000 for non-Indigenous Australians).

Source: Table D1.08.1. AIHW analysis of Australian Cancer Database 2016.

Indigenous Australians aged under 45 had lower cancer incidence rates than non-Indigenous Australians (44 and 74 per 100,000 respectively). However, for those aged 45 and over, the cancer incidence rates were higher for Indigenous Australians, with the rate ratio increasing with age (Table D1.08.2, Figure 1.08.2).

Figure 1.08.2: Age-specific cancer incidence rates, by Indigenous status, NSW, Qld, WA and the NT combined, 2011–2015

This bar chart shows that, for Indigenous Australians the incidence rate (per 100,000) of cancer increased with age, from 44 per 100,000 for those aged 44 or under to 2,725 per 100,000 for those aged 75 and over. A similar trend can be observed for non-Indigenous Australians with rates increasing from 74 per 100,000 for those aged 44 or under to 2,494 for those aged 75 and over.

Source: Table D1.08.2. AIHW analysis of Australian Cancer Database 2016.

Up to the age of 74, rates of prostate cancer were higher for non-Indigenous males. However, for those aged 75 and over, the rates were similar for both Indigenous and non-Indigenous males (724 and 723 per 100,000, respectively). For breast cancer, the rates were higher for non-Indigenous females up to the age of 64 however, the rates for ages between 65 and 74 were similar for both Indigenous and non-Indigenous females, and rates for ages 75 and over were higher for Indigenous females compared with non-Indigenous females. Lung cancer rates were higher for Indigenous Australians in all age groups, with rates 1.3–2.3 times the rate of non-Indigenous Australians (Table D1.08.2, Figure 1.08.3).

Figure 1.08.3: Age-specific incidence rates of selected cancers, by Indigenous status, NSW, Qld, WA and the NT combined, 2011–2015

This bar chart shows that for Indigenous and non-Indigenous Australians the rate of prostate cancer, female breast cancer and lung cancer increased with age. The rate of prostate cancer was lower for Indigenous Australians than non-indigenous Australians for those aged under 75. Rates were highest for non-Indigenous Australians aged between 65 and 74 (809 per 100,000) and for Indigenous Australians aged over 75 (724 per 100,000). The rate of female breast cancer was highest in the 65 to74 age group (379 per 100,000 for Indigenous Australians and 378 for non-Indigenous Australians). The rate of lung cancer was highest for Australians aged 75 and over (517 per 100,000 for Indigenous Australians and 296 for non-Indigenous Australians).

Source: Table D1.08.2. AIHW analysis of Australian Cancer Database 2016.

In 2011–2015, the five-year crude cancer survival rate was lower for both Indigenous males (41%) and females (49%), than for non-Indigenous males (57%) and females (62%) (Table D1.08.8, Figure 1.08.4).

Figure 1.08.4: 5-year crude survival for selected cancers, by Indigenous status and sex, NSW, Qld, WA and the NT combined, 2011–2015

This bar chart shows that the 5-year survival rate for cancer was lower for Indigenous Australian males (41%) and females (49%) than non-Indigenous Australian males (57%) and females (62%). For Indigenous males, the crude survival rate was 73% for prostate cancer, 53% for bowel cancer and 10% for lung cancer. For Indigenous females, the crude survival rate was 74% for breast cancer, 46% for bowel cancer and 9% for lung cancer.

Note: This figure presents crude survival, which is affected by non-cancer-related mortality rates. These rates are different between Indigenous and non-Indigenous Australians.

Source: Table D1.08.8. AIHW analysis of Australian Cancer Database 2016.

Deaths due to cancer

Mortality data in this measure are from 5 jurisdictions for which the quality of Indigenous identification in the deaths data is considered to be adequate; namely, New South Wales, Queensland, Western Australia, South Australia and the Northern Territory. Data by remoteness are reported for all Australian states and territories combined. (see Data sources: National Mortality Database).

Over the 5-year period 2015–2019, 3,612 Indigenous Australians died due to cancer and other neoplasms, and this was the leading cause of death (accounting for 23.4% of all deaths) (see measure 1.23 Leading causes of mortality) (Table D1.23.1). The vast majority (99%, or 3,563) of these deaths were caused by cancer (that is, malignant neoplasms), corresponding to 23.1% of all deaths and a rate of 99 cancer deaths per 100,000 population.

For Indigenous Australians, the leading causes of cancer deaths were: digestive organs (including liver cancer, 1,070 deaths or 30% of cancer and other neoplasm deaths); respiratory organs (including lungs, 935 deaths or 26%); lymphoid, haematopoietic and related tissue (259 deaths or 7.2%); ill-defined and unknown primary sites (250 deaths or 6.9%); and head and neck (216 deaths or 6%) (Table D1.23.5).

For Indigenous Australians the leading causes of death due to cancer varied by sex. There was a higher percentage of male deaths than female deaths attributable to cancers of digestive organs (32% of cancer and other neoplasm deaths compared with 27% for females) and cancers of the head and neck (8.2% of cancer and other neoplasm deaths compared with 3.4% for females). Breast cancer accounted for 11% of cancer and other neoplasm deaths among Indigenous females, and cervical cancer accounted for a further 10%. Prostate cancer accounted for 5.8% of cancer and other neoplasm deaths of Indigenous males (Table D1.23.12, Figure 1.08.5).

In 2015–2019, after adjusting for differences in the age structure between the Indigenous and non-Indigenous populations, Indigenous Australians died from cancer (malignant neoplasms) at 1.4 times the rate of non‑Indigenous Australians (226 and 162 per 100,000, respectively).

Figure 1.08.5: Proportion of cancer and other neoplasm deaths, Indigenous Australians, by cancer type and sex, NSW, Qld, WA, SA and the NT combined, 2015–2019

This bar chart shows that the top 2 cancers which caused over half of deaths from cancer for Indigenous Australians was cancer of digestive organs (32% for males and 26.9% for females), and cancer of respiratory and intrathoracic organs (26.9% for males and 24.7% for females). For females, 11.2% deaths from cancers were caused by breast cancer, and 10.0% caused by cancer of female genital organs. For males, 6.2% of deaths were caused by cancer of the male genital organs.

Source: Table D1.23.12. AIHW National Mortality Database.

Cancer and other neoplasms was the second leading cause of the gap in death rates between Indigenous and non-Indigenous Australians (18% of the total gap in death rates) (Table D1.23.1). The specific cancers contributing the most to this gap were cancers of the respiratory organs (45%) and cancers of the digestive system (33%) (Table D1.23.12).

Over the 5 year period 2015–2019, for Indigenous Australians the death rate due to cancer and other neoplasms was the lowest in New South Wales (89 per 100,000) and highest in the Northern Territory (129 per 100,000) (Table D1.23.2). Across Australia, the rate was lower in non-remote areas (90 per 100,000) than in remote (126 per 100,000).

In remote areas, after adjusting for differences in the age structure between the two populations, the rate of death due to cancer among Indigenous Australians was 1.7 times the rate for non-Indigenous Australians (Table D1.23.30). The gap between Indigenous and non-Indigenous Australians in remote areas was 2.5 times as high as the gap in non-remote areas (gap of 109 compared with 44 deaths per 100,000, respectively).

Between 2006 and 2019, the rate of death due to cancer and other neoplasms increased by 14% for Indigenous Australians, while the rate for non‑Indigenous Australians declined by 13%, based on age-standardised rates. This resulted in the gap in cancer and other neoplasm deaths between the two populations widening over the period.

Over the most recent decade 2010 to 2019, the rate of deaths due to cancer and other neoplasms for Indigenous Australians increased by 12%, while the rate for non-Indigenous Australians declined by 10%. The gap in the rates of the two populations widened over this period (Table D1.23.20, Figure 1.08.6).

The increase in cancer and other neoplasm deaths for Indigenous Australians between 2010 and 2019 can be largely attributed to increases in Queensland, where the age-standardised rate increased by 28%. Over the same period, there were no significant changes in the rate of cancer deaths for New South Wales, Western Australia, South Australia or the Northern Territory (Table D1.23.29).

Figure 1.08.6: Age-standardised mortality rates and changes in the gap due to cancer and other neoplasms, by Indigenous status, NSW, Qld, WA, SA and the NT combined, 2006 to 2019

This line chart shows that, based on age-standardised rates for Indigenous Australians, the mortality rate caused by cancer increased from 205 per 100, 000 in 2006 to 234 per 100,000 in 2019, non-Indigenous decreased 182 per 100,000 in 2006 to 162 per 100,000 in 2019. The gap in the rates of the two populations widened over this period.

Source: Table D1.23.20. AIHW National Mortality Database.

Cancer management

Based on the Bettering the Evaluation and Care of Health (2010–15) survey data, after adjusting for differences in the age structure between the two populations, the rate for cancer management by general practitioners (GPs) was lower for Indigenous Australians than for Other Australians (21 and 27 per 1,000 GP encounters, respectively) (Table D1.08.10). (Other Australians includes non-Indigenous Australians and those whose Indigenous status is unknown.)

Hospitalisation rates

Between July 2015 and June 2017, most (68%) hospitalisations where the principal diagnosis was neoplasms (which includes cancer) were for malignant neoplasms (cancer). This was higher for Indigenous males compared with Indigenous females (76% and 61% respectively) (Table D1.08.14). 

Between July 2015 and June 2017, there were 10,232 hospitalisations for Indigenous Australians with a principal diagnosis of cancer. After adjusting for differences in the age structure between the two populations, Indigenous Australians were hospitalised due to cancer at a rate of 12 per 1,000, lower than the rate for non-Indigenous Australians (16 per 1,000) (Table D1.08.11).

For all cancer-related hospitalisations (principal and additional diagnosis), there were 13,621 same-day hospitalisations for Indigenous Australians and 11,250 overnight hospitalisations. The average length of stay for cancer-related hospitals for Indigenous Australians was 4.4 days (Table D1.08.18).

Between 2004–05 and 2016–17, after adjusting for differences in the age structure between the two populations, there was a 42% increase in hospitalisations for cancer for Indigenous Australians (from 8 to 13 per 1,000), in the six jurisdictions with Indigenous identification data of adequate quality (New South Wales, Victoria, Queensland, Western Australia, South Australia and the Northern Territory) (Table D1.08.15).

For Indigenous males, the hospitalisation rates for prostate cancer almost tripled between 2004–05 and 2016–17, from 0.2 per 1,000 (46 hospitalisations) to 0.6 per 1,000 (216 hospitalisations) (Table D1.08.19).

Between July 2015 and June 2017, the hospitalisation rates for Indigenous Australians for cancer was lowest in Tasmania (9 per 1,000) and highest in South Australia (16 per 1,000) (Table D1.08.12). Hospitalisation rates for cancer also varied between remoteness areas from 10 per 1,000 in Very remote areas to 13 per 1,000 in Major cities (Table D1.08.13).

What do research and evaluations tell us?

The higher prevalence of cancer-related risk factors partly explains the patterns of Indigenous Australian cancer incidence and mortality (AIHW & Cancer Australia 2013). The burden of disease study found that the joint effect of 19 selected behavioural, metabolic, environmental and dietary risk factors contributed 56% of the burden for cancer for Indigenous Australians, the biggest contributors being tobacco use (37%) and alcohol use (9.2%) (AIHW 2022) (see measure 2.15 Tobacco use).

Research on Indigenous Australian cancer outcomes also shows that other contributing factors include:

  • having cancers that have a poor prognosis, such as lung cancer
  • having fatal, screen detectable cancers that are not detected
  • being diagnosed with cancer at a later stage
  • presenting with co-morbidities (that may lead to poorer outcomes)
  • being less likely to receive any treatment, or adequate treatment (Cunningham et al. 2008; Jane et al. 2020; Moore et al. 2014; Valery et al. 2006).

A review by Haigh in 2018 provided a comprehensive synthesis of key information on cancer among Indigenous Australians. The review found that the factors contributing to poorer outcomes among Indigenous Australians diagnosed with cancer are complex. They reflect a broad range of historical, social and cultural determinants and the contribution of lifestyle and other health risk factors, combined with lower participation in screening programs, later diagnosis, lower uptake and completion of cancer treatment, and the presence of other chronic diseases. Providing effective cancer prevention and management also requires improved access to both high-quality primary health care services and tertiary specialist services. The review suggested that substantial improvements will also depend upon the effective implementation of more coordinated and comprehensive strategies that address the complex factors underlying the disadvantages experienced by Indigenous Australians, including action beyond the health service sector (Haigh et al. 2018).

A review into inequalities among Indigenous cancer patients showed an incidence of cancers with a poorer prognosis, such as lung cancer, is higher among Indigenous Australians, largely due to higher rates of smoking. It also found that wide disparities exist in cancer survival between Indigenous and non-Indigenous Australians, particularly in the first year after diagnosis. The review highlighted the need to improve cancer-related health services for Indigenous Australians; however, the available evidence is currently inadequate to effectively direct efforts. For example, despite the high cancer mortality rates, there is little information about the use of palliative care services by Indigenous Australians. The review noted the establishment and use of research collaborations such as DISCOVER-TT (the Centre for Research Excellence for Aboriginal and Torres Strait Islander Cancer Research), which provides an opportunity for developing targeted efforts in improving cancer outcomes for Indigenous Australians (Condon et al. 2013).

The DISCOVER-TT collaboration has since influenced other collaborations, policies and guidelines such as a pilot project to improve Indigenous Australian bowel cancer screening and the National Aboriginal and Torres Strait Islander Cancer Framework. Another research collaboration is the Centre of Research Excellence in Targeted Approaches to Improve Cancer Services for Aboriginal and Torres Strait Islander Australians (TACTICS) that was established in 2019 and is focusing on emerging priorities and high-quality health services research.

Research suggests that survival rates among non-Indigenous patients are up to 50% greater than those for Indigenous patients within the first 12 months of diagnosis, but drops to a similar survival rate 2 years after diagnosis. However, five-year survival was shown to be lower for Indigenous Australians compared with non-Indigenous Australians diagnosed with cancer (50.3% compared with 61.9%) (Cramb 2012). More recent data illustrated in Figure 1.08.4 also demonstrates a similar gap and shows lower five-year survival rates for Indigenous males (41%) and females (49%) compared with non-Indigenous males (57%) and females (62%) for selected cancers.

While Indigenous Australian females are less likely to be diagnosed with breast cancer, they are more likely to die of breast cancer than non-Indigenous Australian females (Tapia et al. 2017). Analysis found that Indigenous females are 1.2 times as likely to die from breast cancer than non-Indigenous females (AIHW 2018). Research also shows that Indigenous females are less likely to participate in breast screening and highly likely to feel culturally isolated in hospitals and clinics (Breast Cancer Network Australia 2018).

Another study aimed to implement and evaluate strategies to improve early detection of breast and cervical cancer in Indigenous women. In three sites, a female Indigenous worker and female GP developed and implemented local plans aimed to improve service coordination and access, GP knowledge, recall systems and health promotion. The evaluation identified the following success factors: collaboration between service providers; community participation in planning and delivery; an Indigenous health worker raising awareness among women and GPs; and a female GP providing a holistic service. The study suggested that partnerships involving community members planning and implementing evidence-based strategies may improve the participation of Indigenous women in breast and cervical cancer screening (Reath & Carey 2008).

For cervical cancer, studies show that later stage at diagnosis and availability of treatment, especially for females in remote areas, could be factors accounting for the higher cervical cancer mortality rates found for Indigenous females (Harvey et al. 2018). For more on cervical cancer screening see measure 3.04 Early detection and early treatment.

A study on cancer survival in children found that overall, five-year survival was 75% for Indigenous children and 82.3% for non-Indigenous children. Following adjustments for remoteness of residence, socioeconomic disadvantage, cancer diagnostic group and year of diagnosis, Indigenous cases had 1.36 times the risk of dying within five years of diagnosis compared with other children. The study noted that differences in place of residence, socioeconomic disadvantage, and cancer diagnostic group only partially explained the survival disadvantage of Indigenous children. The study also noted that other reasons underlying the disparities in childhood cancer outcomes by Indigenous status are yet to be determined and further research is required, but they may involve factors such as differences in timing and uptake of treatment (Valery et al. 2013).

One study quantified hospital-recorded comorbidities using the Elixhauser Comorbidity Index to examine their influence on risk of cancer death and then considered effect variation by Indigenous status. The study found that comorbidities at diagnosis increased the risk of cancer death in addition to risks associated with Indigenous status, remoteness of residence and disease stage at diagnosis. The Indigenous cohort experienced comparatively greater exposure to comorbidities, which adds to disparities in cancer outcomes (Banham et al. 2018).

A matched cohort study was undertaken into cancer treatment and the risk of cancer death among Indigenous and non-Indigenous South Australians. The study quantified the influence of surgical, systemic and radiotherapy treatment on the risk of cancer death among matched cohorts of cancer cases and the comparative exposure of cohorts to these treatments. The study found that the effects of treatment did not differ between Indigenous and non-Indigenous cohorts. However, comparatively less exposure to surgical and systemic treatments among Indigenous cancer cases further complicated the disadvantages associated with geographic remoteness, advanced stage of disease and comorbid conditions at diagnosis and add to disparities in cancer deaths. System level responses to improving access, use and quality of effective treatments are needed to improve survival after cancer diagnosis (Banham et al. 2019).

Over the period 1998 to 2015, a study was conducted on cancer predictors among Indigenous adults from 26 rural and remote communities in Far North Queensland. The study showed Torres Strait Islanders have a significantly higher overall cancer incidence than Aboriginal people; diabetes was associated with a higher risk of cancer overall, particularly digestive system cancers; and smoking was a strong risk factor for cancer overall and particularly lung cancer. The study results indicated different cancer profiles for the Torres Strait Islander population (with higher rates of diabetes) and the Aboriginal population (with higher rates of smoking). These differences highlight the need for a customised mix of preventive strategies for these population groups (Li et al. 2018).

A cohort study into patterns of care and comorbidities among Indigenous and non-Indigenous cancer patients in Queensland showed that Indigenous Australians were diagnosed with more advanced cancer, had greater comorbidity, received less cancer treatment and were 30% more likely to die from cancer. The study found that survival was 60% lower for Indigenous Australians in the first year after diagnosis, but not significantly different in subsequent years. The first‑year survival disparity was likely to be related to a lack of cancer treatment. However, the study also found that Indigenous Australians receiving cancer treatment had poorer outcomes overall, despite comparable time to commencement, duration and amount of treatment received. Excess comorbidities have been shown to contribute to the lower curative treatment rates and poorer cancer survival among Indigenous Australians. In this study, the analysis showed that among cases without comorbidity, being Indigenous was associated with not receiving any cancer treatment. This study finding suggests that factors other than, or in conjunction with, comorbidity status may play a role.

The study also noted of particular concern are the reasons why treatment was not received by Indigenous Australians without comorbidities, who lived in an urban setting where cancer services are accessible, were not socially disadvantaged, and had localised cancer at diagnosis. The study suggested that understanding of reasons for treatment disparities in this group may enable cancer care providers to improve treatment uptake and survival. The study found that reasons for not receiving treatment were not routinely documented and recommended that the views of patients and health services staff are sought so that barriers to treatment can be understood.The study also showed, similar to other reports, that irrespective of remoteness or socioeconomic advantage, Indigenous Australians received less treatment than non-Indigenous counterparts (Moore et al. 2014; Tervonen et al. 2016).

A small study explored Western Australian Aboriginal peoples’ perceptions, beliefs and understanding of cancer. The study found that misunderstanding, fear of death, fatalism, shame, preference for traditional healing, beliefs such as cancer is contagious and other spiritual issues affected their decisions around accessing services. The study suggested that these findings provide useful information for health providers who are involved in cancer-related service delivery (Shahid et al. 2009).

The CanDAD project underway in South Australia is an approach whereby Aboriginal communities are working with policy makers, service providers and researchers to change the way Indigenous cancer data are collected and analysed. It aims to develop an integrated comprehensive, cancer monitoring and surveillance system for Aboriginal people, while also incorporating their experiences with cancer services. It is likely to have relevance for other regions (Brown et al. 2016; Yerrell et al. 2016).

Indigenous status identification in cancer registry data is not consistent nationwide. A study of cancer registry data in New South Wales found many cases with missing Indigenous status. Once imputed, an additional 12–13% of Indigenous cancer cases were identified (Morrell et al. 2012).

One study of a cultural awareness training initiative for primary care health professionals in regional Victoria found that Aboriginal clients reported the difference that cultural training for BreastScreen staff had made and felt genuinely welcomed by clinic staff (Anderson 2012). Other studies reported similarly successful initiatives which resulted in increased numbers of Aboriginal women participating in breast screening programs (Jones et al. 2011).

A small qualitative study evaluated the acceptability of a cancer care team based at one New South Wales Aboriginal medical service in supporting patients’ cancer journeys and assessed improvements in access to cancer care. The evaluation found that the cancer care team provided a culturally safe and accessible service for clients. It showed improved accessibility of cancer care services, including the availability of home visits, transport and accompaniment to tertiary settings (Ivers et al. 2019).

In 2016, an evaluation and outcomes framework was developed for the Victorian Cancer Survivorship Program Phase II grants scheme (VCSP2). The VCSP was established in 2011 to help develop innovative models of follow-up care and to address the needs of survivors following treatment. In its first phase (2011–14), the focus of the VCSP was on trialling collaborative models of care across acute, primary and community care sectors. Six pilot projects were funded and evaluated for effectiveness, acceptability, sustainability and transferability. From 2015, three of the pilot projects have been supporting a select number of cancer services across Victoria to implement their models of care through the VCSP2. The evaluation and outcomes framework was developed to inform the application of consistent evaluation measures and methods to the planning, conduct, delivery and evaluation of the VCSP2. While this framework was designed specifically for VCSP2, it may provide a useful guide to the development and implementation of evaluation activities in other jurisdictions or in cancer survivorship initiatives in Victoria (Coughlan 2016).

Implications

The rising mortality rates and widening of the gap for Indigenous Australians from cancer is of concern. While some positive health effects of the recent reductions in smoking prevalence may be immediate and within the short term (such as in cardiovascular outcomes), there is a long lag before the changes will fully impact upon smoking-related cancer mortality. This means smoking-related cancer mortality may continue to rise over the next decade before reaching its peak (Lovett et al. 2017).

The lower survival rate for Indigenous Australians from some cancers may be partly explained by factors such as lower participation in screening, later diagnosis, lower likelihood of receiving treatment, comorbidities and a greater likelihood of being diagnosed with cancers with poorer survival (Cunningham et al. 2008; Moore et al. 2014; Shahid et al. 2016; Supramaniam et al. 2011).

Evidence suggests that improvements in cancer care for Indigenous Australians are required, including in cancer diagnosis, treatment and health support services so they are more accessible and acceptable to Indigenous Australians (Condon et al. 2014; Meiklejohn et al. 2016).

More research into why Indigenous Australians might not access cancer treatment when needed, and into the perspectives of Indigenous Australians and of health service staff about barriers to accessing treatment will assist in developing more culturally safe cancer care. However, factors such as miscommunication and social and cultural differences between patients and health care providers, poor understanding of medical advice, inherent racism in the health system, lack of transport, geographic isolation, and lack of Indigenous support persons, have already been cited as some of the reasons for the disparities in treatment outcomes for Indigenous Australians. Personalised cancer care, which addresses the clinical, social and overall health requirements of Indigenous patients, may improve cancer outcomes. This may be particularly important during the first year after diagnosis (Moore et al. 2014).

An understanding of Indigenous Australians’ beliefs and perceptions of cancer and their care-seeking behaviour is needed when planning and delivering more effective culturally safe interventions, screening and models of care. Cultural security, removing system barriers and technical and scientific excellence are all essential to ensure Indigenous Australians use health care to realise the benefits of modern cancer treatments (Shahid et al. 2009).

Quality data are critical to understanding the variations in cancer care and outcomes for Indigenous Australians. However, as reported in the literature, there is limited or incomplete data available on Indigenous Australians diagnosed with cancer (Cancer Australia 2015; Garvey et al. 2011; Jane et al. 2020; Yerrell et al. 2016). Inconsistent Indigenous status identification in cancer notifications in several jurisdictions has been a problem (AIHW 2013), and there is a need for primary health care services in particular to address under‑identification (Haigh et al. 2018; Jane et al. 2020). However, nationally, there is indication that accuracy in Indigenous status identification is improving (AIHW 2019).

The National Aboriginal and Torres Strait Islander Cancer Framework released in 2015 aims to address disparities and improve cancer outcomes for Indigenous Australians by ensuring timely access to good quality and appropriate cancer related services across the cancer continuum. It provides strategic direction by setting out seven priority areas for action and suggests enablers to help in planning. The priority areas include improving knowledge and attitudes about cancer; focusing on prevention activities; increasing participation in screening and immunisation; ensuring early diagnosis; delivering optimal and culturally appropriate treatment and care; involving, informing and supporting families and carers; and strengthening the capacity of cancer-related services to meet the needs of Indigenous Australians (Cancer Australia 2015).

The Framework also highlights the need for improved Indigenous identification, including in pathology requests and reports. It also suggests the need for routine national data collection, access and data linkage to allow national monitoring and reporting (Cancer Australia 2015).

The policy context is at Policies and strategies.

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