Review of cancer among Aboriginal and Torres Strait Islander people

 Haigh M¹, Burns J², Potter C², Elwell M², Hollows M², Mundy J², Taylor E¹, Thompson S¹ (2018)

1. University of Western Australia
2. Australian Indigenous HealthInfoNet

Suggested citation

Haigh M, Burns J, Potter C, Elwell M, Hollows M, Mundy J, Taylor E, Thompson S (2018) Review of cancer among Aboriginal and Torres Strait Islander people. Australian Indigenous HealthBulletin 18(3) https://healthbulletin.org.au/articles/review-of-cancer-2018

Introduction
About this review
Acknowledgements
Summary
Key facts
The context for cancer among Aboriginal and Torres Strait Islander people
Factors contributing to cancer occurrence
Extent of cancer among Aboriginal and Torres Strait Islander people
Specific cancers
Prevention and management
Management
Programs and services
National initiatives to improve cancer care
Policies and strategies
Future directions
Concluding comments
Abbreviations
Appendix 1: Data sources and limitations
References

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Introduction

Cancer is a major cause of illness in Australia and has substantial social and economic impacts on individuals, families and the community [1]. Findings from the Australian Burden of Disease Study showed that cancer was the greatest cause of health burden in Australia. Socially disadvantaged groups and Indigenous people are particularly at risk, Aboriginal and Torres Strait Islander people experience nearly twice the cancer burden of non-Indigenous people. The most common cancers diagnosed among Aboriginal and Torres Strait Islander people are lung, breast (females), bowel and prostate (males) [2].

Cancer is the term used for a variety of diseases that cause damage to the DNA (genetic blueprint) of the cells resulting in uncontrolled growth (cells normally grow and multiply in a controlled manner) [3]. If cells spread into surrounding areas or to different parts of the body (metastasise), this invasion is known as malignancy. A benign growth is a mass of cells that doesn’t spread to surrounding areas or metastasise. Malignant (cancerous) or benign (non-cancerous) abnormal tissue growths may both be referred to as neoplasms. Cancerous cells can arise from almost any cell, so cancer can occur almost anywhere in the body [4]. Different types of cancer are distinguished by the location in the body where the disease began (for example, lung) or by the cell type involved (for example, basal cell carcinoma).

About this review

The purpose of this review is to provide a comprehensive synthesis of key information on cancer among Aboriginal and Torres Strait Islander people in Australia to: (1) inform those involved or interested in Aboriginal and Torres Strait Islander health; and (2) provide the evidence for those involved in policy, strategy and program development and delivery. The review provides general information on factors that contribute to cancer among Aboriginal and Torres Strait Islander people. It provides detailed information on the extent of cancer among Aboriginal and Torres Strait Islander people, including: incidence, prevalence and survival data; mortality and burden of disease and health service utilisation. This review discusses the issues of prevention and management of cancer, and provides information on relevant programs, services, policies and strategies that address cancer among Aboriginal and Torres Strait Islander people. It concludes by discussing possible future directions for combatting cancer in Australia.

This review draws mostly on journal publications, government reports, national data collections and national surveys, the majority of which can be accessed through the HealthInfoNet’s Australian Indigenous library (http://aih-wp.local/key-resources/publications).

When referring to Australia’s Indigenous people, the HealthInfoNet prefers to use the terms Aboriginal, Torres Strait Islander, or Aboriginal and Torres Strait Islander. However, when referencing information from other sources, authors may use the terms from the original source unless they can obtain clarification from the report authors/copyright holders. As a result, readers may see these terms used interchangeably with the term ‘Indigenous’ in some instances.

Acknowledgements

Special thanks are extended to:

• the anonymous reviewer whose comments greatly assisted finalisation of this review
• staff at the Australian Indigenous HealthInfoNet for their assistance and support
• Robin Kagie, University of Western Australia, for her assistance
• the Australian Government Department of Health for their ongoing support of the work of the HealthInfoNet.

Summary

Cancer is a disease often associated with ageing, with incidence and mortality rates increasing in older age groups. As life expectancy increases, Australia’s population is ageing, so cancer incidence rates have also increased. Aboriginal and Torres Strait Islander people often have a higher incidence of health conditions at a younger age than their non-Indigenous peers, for cancer however, the age-standardised incidence of cancer overall is higher for Aboriginal and Torres Strait Islander than for non-Indigenous people from the age of about 45 years. For a number of cancers Aboriginal and Torres Strait Islander people have a lower incidence. These cancers include breast cancer, prostate cancer and non-Hodgkin lymphoma. Many of these cancers are considered to be preventable.

Risk factors for cancer

Tobacco smoking is the greatest risk factor for cancer, and smoking-related cancers generally have a much poorer prognosis. Cancers caused by smoking include lung, oesophagus, larynx, mouth, throat, kidney, bladder, liver, pancreas, cervix and stomach. Aboriginal and Torres Strait Islander people continue to have markedly higher rates of tobacco smoking, although this is an area where government and community-based interventions have been sustained over a number of years. It appears that that there may be a decrease in smoking prevalence in urban areas although whether an impact is occurring in more remote areas is less clear. There is a need to persist with the efforts at reducing the uptake of smoking in youth and to support smoking cessation programs.

A group of cancers with higher incidence in Aboriginal and Torres Strait Islander people are those related to high alcohol consumption. While overall, Aboriginal and Torres Strait Islander people are less likely to consume alcohol than non-Indigenous people, many of those who drink consume at levels considered harmful to health. Binge drinking and regular heavy alcohol consumption are risks for breast, bowel, liver and oral cancers. The risk of alcohol-related cancers is much higher in people who also smoke, with the risks multiplicative not just additive.

Some infections can be risk factors for cancer. A major risk factor for liver cancer is chronic infection with hepatitis B or with hepatitis C, both infections have higher rates in the Aboriginal and Torres Strait Islander population. Immunisation for hepatitis B and improved treatments for hepatitis C aim to reduce these risks. Infection with certain subtypes of the human papilloma virus (HPV) can cause the development of cervical cancer. The implementation of HPV vaccination programs, which help protect against the subtypes of virus known to have the greatest association with cervical cancer, will greatly reduce the incidence of cervical abnormalities and cervical cancer over time.

Poor nutrition, being overweight or obese and having low levels of physical activity are other risk factors for cancer. All forms of physical activity protect against some cancers, as well as against weight gain. The risk for some cancers increases with weight gain, overweight and obesity, independent of the level of physical activity. Many Aboriginal and Torres Strait Islander adult people don’t eat enough fruit and vegetables, are overweight or obese and don’t get enough physical activity. In remote communities, the contemporary diet of Aboriginal and Torres Strait Islander people tends to be very low in fruit and vegetable content, high in energy and sugars, and moderately high in fats.

These risk factors, sometimes termed ‘lifestyle’ or ‘behavioural’, are known to be strongly influenced by the social determinants of health. These refer to the economic opportunities, physical infrastructure and social conditions that influence the health of individuals and communities, and reflect the substantial disadvantages experienced by Aboriginal and Torres Strait Islander people in comparison with non-Indigenous people. These disadvantages are evident in measures of education, employment, income, housing, access to services and incarceration. This is underpinned by the dispossession which accompanied colonisation and ongoing marginalisation, racism and child removal which have had an enduring impact on the health status of Aboriginal and Torres Strait Islander people.

Social and cultural determinants not only influence risk factors for cancer but also health seeking behaviour and therefore participation in cancer screening programs, willingness to present to health providers with symptoms and the timeliness of diagnosis and uptake and adherence to recommended treatment.

Screening

Australia has three national population-based screening programs for breast, bowel and cervical cancers, all of which aim to reduce morbidity and mortality through early detection:

• BreastScreen Australia, the national breast screening program. Aboriginal and Torres Strait Islander women have been under-screened and this has been a consistent finding.
• the National Bowel Cancer Screening Program (NBCSP). The participation rate for Aboriginal and Torres Strait Islander people has been well below that for non-Indigenous people.
• the National Cervical Screening Program. A new approach to screening based upon a HPV cervical screening test was implemented in December 2017. Regular cervical screening protects against cervical cancer by detecting HPV which in rare cases can lead to cell changes in the cervix. Previously the Pap (Papanicolaou) test was used. Generally, Aboriginal and Torres Strait Islander women have been under-screened.

Cancer mortality and treatment uptake

While once a diagnosis of cancer was considered a death sentence, there have been progressive breakthroughs in the diagnosis and management of cancer over the last few decades. With earlier diagnosis and improved treatments, including surgery, chemotherapy, immunotherapy and radiotherapy, there are many more options for cancer treatment. Many cancer survivors have been cured and even those who eventually succumb to their disease can have many years with a high quality of life.

Unfortunately, Aboriginal and Torres Strait Islander people have not experienced the benefits of modern cancer treatments to the same extent as non-Indigenous people. Survival information shows that Aboriginal and Torres Strait Islander people experienced substantially lower five-year crude survival rates across all age groups compared with non-Indigenous people. For both population groups, the five-year crude survival rate fell with age. This deficit in survival was true across all types of cancer.

While to some extent this survival disparity reflects higher rates of cancer with a poor prognosis and later staging at diagnosis, this does not account for all of the difference in survival rates and attention must turn to the way in which health services meet the needs of Aboriginal and Torres Strait Islander people.

There is increasing literature around some of the challenges for Aboriginal and Torres Strait Islander people in access and uptake of cancer treatments. Distance and poor availability of services with increasing remoteness present barriers to accessing health care services. The lack of cancer services in regional and remote areas, where there is a higher proportion of Aboriginal and Torres Strait Islander people in the population, contributes to the particularly poor outcomes of patients living in those areas. Factors such as the location and accessibility of health services have been shown to influence the extent to which Aboriginal and Torres Strait Islander people present for diagnosis and continue with treatment. Radiotherapy services are generally located in large population centres and this may mean patients forego this as a treatment even when recommended because it would require many weeks away from their home and family.

In addition to logistical difficulties, other barriers to the use of cancer health services by Aboriginal and Torres Strait Islander people have been described. There are substantial costs associated with cancer treatment including consultation fees, medicines, transport and lost wages. When people travel from remote areas to a metropolitan hospital, there may be less understanding of their culture and needs, and separation from land and family is more acutely experienced. Collaboration and integration across different parts of the health system are often suboptimal and many Aboriginal and Torres Strait Islander people will have a fear or lack of trust of mainstream health services based upon personal experience or collective memory. Cultural misunderstandings, poor communication and experiences of discrimination by mainstream practitioners have been commonly documented. There is often poor understanding of Aboriginal cultural beliefs, including fatalistic or differing cultural beliefs about cancer, and that a diagnosis of cancer may be associated with feelings of shame.

The first National Aboriginal and Torres Strait Islander Cancer Framework, released in 2015 by Cancer Australia, reinforces that culturally safe services and a culturally competent workforce are considered core requirements for improving Aboriginal and Torres Strait Islander cancer outcomes. Culturally appropriate cancer care is based upon strong therapeutic relationships between patients and tertiary and primary health professionals and cross-cultural knowledge and expert skills on the part of health professionals. It is recommended that cultural competence training is made available to all staff members to help improve communication and quality of care provided and to ensure that Aboriginal and Torres Strait Islander people are not discouraged from presenting. Health care providers who understand the beliefs and perspectives of Aboriginal and Torres Strait Islanders regarding cancer will be better placed to build an appropriate therapeutic relationship in cancer-related consultations.

Aboriginal and Torres Strait Islander cancer support groups have been identified as important for improving cancer awareness and increasing participation in cancer screening services. Aboriginal women attending these support groups have reported an increased understanding of screening and reported less fear and concern over cultural appropriateness, with increases in screening rates. Support groups also can help in follow up and ongoing care for cancer survivors, particularly where they are tailored to meet the needs of Aboriginal and Torres Strait Islander people.

Policies to address Aboriginal cancer disparities

Increasingly there has been recognition of the disparities that exist in Aboriginal cancer outcomes and the need for concerted efforts to overcome these. The National Aboriginal and Torres Strait Islander Cancer Framework (Framework) provides guidance for individuals, communities, organisations and governments and outlines seven priority areas for action:

• improving knowledge and attitudes about cancer
• focusing 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
• strengthening the capacity of cancer-related services to meet the needs of Aboriginal and Torres Strait Islander people.

Addressing the various factors that contribute to the development and better treatment of cancer among Aboriginal and Torres Strait Islander people is important. Improvements in these areas, particularly in behavioural risk factors, are likely to take some time to be reflected in better outcomes. However, each of the Framework priorities was accompanied by a number of enablers to assist in planning or reviewing strategies to address that priority. The enablers provide flexible approaches to meeting the priorities that allow for local context and needs. The development of the Framework has created a high level of expectation around the ability to address cancer disparities. The Wellbeing Framework for Aboriginal and Torres Strait Islander Peoples Living with Chronic Disease, published in 2015, aims to assist healthcare services to improve the quality of life and health outcomes for Aboriginal and Torres Strait Islander people living with chronic disease. It aims to achieve this goal by improving the quality of care through more supportive and culturally appropriate care that the physical aspects.

Current deficiencies in the prevention and management of cancer in Aboriginal and Torres Strait Islander people suggest there is considerable scope for better services that should lead to improvements in the short to medium term. Effective cancer prevention and management programs, that are tailored to community needs and are culturally appropriate, are vital for the current and future health of Aboriginal and Torres Strait Islander people. As with all complex health conditions, this requires improved access to and integration of high quality primary health care services and tertiary specialist services.

Key facts

The context for cancer among Aboriginal and Torres Strait Islander people

• Factors contributing to cancer outcomes among Aboriginal and Torres Strait Islander people reflect a combination of broad historical influences, and social and cultural determinants, as well as proximal health risk factors and the delivery of cancer services.
• Many cancer risk factors are more common in Aboriginal and Torres Strait Islander people than other Australians, including: consuming alcohol at risky levels; smoking; and being overweight or obese.

Extent of cancer among Aboriginal and Torres Strait Islander people

• Aboriginal and Torres Strait Islander people generally have lower cancer prevalence than non-Indigenous people.
• Five year survival is lower for Aboriginal and Torres Strait Islander people than for non-Indigenous people.
• Lung cancer is the most commonly diagnosed cancer among Aboriginal and Torres Strait Islander people, followed by breast cancer (females), bowel cancer and prostate cancer (males).
• Aboriginal and Torres Strait Islander people have lower hospitalisation rates than non-Indigenous people for a principal diagnosis of cancer.
• Mortality rates among Aboriginal and Torres Strait Islander people are higher than for non-Indigenous people.
• Cancer is the third most common contributor to fatal burden for Aboriginal and Torres Strait Islander people. Lung cancer comprises the largest proportion of the fatal burden due to cancer.

Prevention and management

• Culturally appropriate, locally supported, targeted intensive lifestyle programs are recommended for Aboriginal and Torres Strait Islander people to provide participants with the life skills, knowledge and support needed to make sustainable lifestyle changes to prevent the onset of cancer.
• Effective cancer management through early detection programs, a culturally competent workforce, cancer support groups, assessment of the unmet support needs of patients diagnosed with cancer and improved links between Aboriginal and Torres Strait Islander communities, primary health care providers and mainstream cancer care services could assist in sustained improvements in cancer care and health outcomes for Aboriginal and Torres Strait Islander people.

Programs and services

• Government-funded, population based screening activities for the early detection of cancer include BreastScreen Australia, the National Bowel Cancer Screening Program, and the National Cervical Screening Program. To increase participation in screening programs, there is a need for flexibility in the delivery of these services to ensure they are culturally sensitive and appropriate to the knowledge, attitudes and beliefs of Aboriginal and Torres Strait Islander people.

Policies and strategies

• The first National Aboriginal and Torres Strait Islander Cancer Framework was released in 2015, to address disparities and improve cancer outcomes for Aboriginal and Torres Strait Islander people.

The context for cancer among Aboriginal and Torres Strait Islander people

The risk of developing cancer is influenced not only by an individual’s age, family history and behaviour [5], but also by historical, socioeconomic, cultural and geographical factors [6]. Cancer exists alongside a number of determinants that influence the health of individuals, including the physical, economic and social environments in which people live. This is particularly the case for Aboriginal and Torres Strait Islander people who still suffer from the consequences of European settlement, in particular the impact of infectious and chronic diseases, and social dislocation. These factors, considered historical in origin, have been perpetuated by the contemporary social and cultural determinants of health that contribute to current Aboriginal and Torres Strait Islander health inequalities [7]. To understand the impact of cancer on Aboriginal and Torres Strait Islander people, it is necessary to understand the historical, social and cultural context and the demographic factors related to Aboriginal and Torres Strait Islander health.

Historical, socioeconomic and cultural context

Aboriginal and Torres Strait Islander people, the first populations of Australia, traditionally had hunter-gatherer lifestyles but the arrival of Europeans in 1788 led to major changes [7]. Activities such as traditional ways of finding food and resources, cultural practices and sustaining the spiritual connection to land changed over time [7-9]. The decline in these practices, combined with an increase in Western lifestyles, set within a context of colonisation which promoted dispossession, marginalisation, racism and Stolen Generations, have had an enduring impact on the health status of Aboriginal and Torres Strait Islander people [7, 10-13]. Adverse changes in physical activity and nutrition, combined with the introduction of alcohol and tobacco (all key risk factors for cancer), played an important role in the development of cancer in Aboriginal and Torres Strait Islander people, particularly in the second half of the 20th century [14, 15].

Economic opportunity, physical infrastructure and social conditions are known to influence the health of individuals and communities [16-18]. In terms of all of these factors, Aboriginal and Torres Strait Islander people suffer substantial disadvantage in comparison with non-Indigenous people, evident in measures of education, employment, income, housing, access to services, connection with land, racism, and incarceration.

The knowledge, attitudes and beliefs which Aboriginal and Torres Strait Islander people hold in relation to cancer can have a negative impact on health seeking behaviours, such as participation in screening programs and in making decisions around cancer treatment. It is probable that a lack of knowledge about cancer exists and there is poor understanding of its causes, available treatments and likelihood of survival [19]. Feelings of ‘shame’ around cancer and perceptions of culturally unsafe health services are common. High mortality rates from cancer and few public stories of survivorship may have led to fatalistic attitudes and cancer being associated with lack of survival [19-21]. Some traditional beliefs around cancer are that it is a form of punishment for a past misdeed [20], the fault of ‘white man’ as it was not a concern before colonisation [19] or that it is contagious [19, 20] but how widespread such beliefs are in the contemporary world is unknown{DiGiacomo, 2012 #30272;Shahid, 2009 #16348}.

Demographic factors

In 2016, the Aboriginal and Torres Strait Islander population was estimated to be 744,956 people, comprising 3.1% of the total Australian population and ranging from 0.9% of the total population in Victoria to 30% in the Northern Territory (Table 1) [22, 23]. The majority of Aboriginal and Torres Strait Islander people lived in New South Wales and Queensland (Table 1).

It is estimated that in 2016, around 35% of Aboriginal and Torres Strait Islander people (262,297 people) lived in major cities, 45% (333,238 people) lived in inner and outer regional areas and 20% (149,421 people) lived in remote and very remote areas [22].

The Aboriginal and Torres Strait Islander population is younger than the non-Indigenous population: 34% are aged less than 15 years (compared with 19% non-Indigenous), and only 4% are aged 65 and over (compared with 15% non-Indigenous) (Derived from [22, 24]).

Notes:

1. Rates per 100,000 population, age-standardised to the Australian population at 30 June 2001
2. Cancers are ordered according to most common causes of cancer deaths among Aboriginal and Torres Strait Islander people
3. Rate ratio Aboriginal and Torres Strait Islander: non-Indigenous people
4. Rounding may result in inconsistencies in calculated ratios

Source: AIHW, 2018 (derived from age-standardised mortality graphs) [2])

For 2011–2015, the age-standardised mortality rate for all cancers combined ranged from 159 per 100,000 (major cities) to 246 per 100,000 (remote Australia) across remoteness areas for Aboriginal and Torres Strait Islander people; for non-Indigenous people, it ranged from 118 per 100,000 (very remote Australia) to 139 per 100,000 (outer regional Australia) [2].

Burden of disease

Cancer was the third most common contributor to fatal burden (17%) for Aboriginal and Torres Strait Islander people for 2011 [48]. Cancer contributed a higher proportion of years of life lost (YLL) for Aboriginal and Torres Strait Islander females ranking first (20%), compared with males ranking third (16%). For Aboriginal and Torres Strait Islander people aged 45–64 years, cancer was the second highest contributor to fatal burden at 27%. Lung cancer comprised the largest proportion of the fatal burden due to cancer (14%).

Potentially avoidable deaths

For 2008–2012, in NSW, Qld, WA, SA and the NT, cancer^[3] was ranked second at 18% in terms of conditions causing avoidable mortality for Aboriginal and Torres Strait Islander people [49]. Lung cancer was the highest individual contributor, comprising 7% of the total 18%. After age-adjustment, cancer as a cause of avoidable mortality among Aboriginal and Torres Strait Islander people was 1.7 times the rate for non-Indigenous people (97 per 100,000 compared with 55 per 100,000). After age-adjustment, cancer was ranked third (14%)^[4] in terms of conditions that contributed to the avoidable mortality gap between Aboriginal and Torres Strait Islander people and non-Indigenous people.

Burden of disease (non-fatal)

In 2011, cancer comprised 0.5% of the total figure for non-fatal burden of disease among Aboriginal and Torres Strait Islander people [48]. Cancer burden was almost entirely due to dying prematurely; living with cancer only accounted for 2.7% of the total burden caused by cancer. Aboriginal and Torres Strait Islander males experienced more non-fatal burden due to cancer than Aboriginal and Torres Strait Islander females (rate ratio of 1.1). In terms of specific cancers, the non-fatal burden caused by breast cancer was the highest at 6.4% of the overall burden for that disease.

Specific cancers

Lung

For 2009–2013, lung cancer was the most commonly diagnosed cancer among Aboriginal and Torres Strait Islander people living in NSW, Vic, Qld, WA and the NT with 945 new cases of lung cancer, an average of 189 cases per year [2]. The age-standardised incidence rate was 2.1 times higher for Aboriginal and Torres Strait Islander people (85 per 100,000) than for non-Indigenous people (41 per 100,000). The lung cancer incidence rate for males was 1.4 times higher (103 per 100,000) than for females (72 per 100,000). New cases of lung cancer increased with age for the Aboriginal and Torres Strait Islander population with the highest incidence rate being for the 65 years and over age group at 448 new cases per 100,000 population. WA recorded the lowest lung cancer incidence rate for Aboriginal and Torres Strait Islander people (70 new cases per 100,000), followed by Vic (78 per 100,000), the NT (78 per 100,000), Qld (89 per 100,000) and NSW (92 per 100,000). Prevalence rates for lung cancer were also higher for Aboriginal and Torres Islander people at the end of 2013 than they were for non-Indigenous people [2]. Prevalence rates increased with increasing age up to 75–79 years and then decreased for both populations.

In 2014–15, the age-standardised hospitalisation rate for lung cancer in Australia for Aboriginal and Torres Strait Islander people was 2.0 times higher than for non-Indigenous people (1.3 per 1,000 and 0.7 per 1,000 respectively) [46]. Hospitalisation rates for lung cancer were slightly higher for Aboriginal and Torres Strait Islander males than females (1.4 per 1,000 and 1.3 per 1,000 respectively), and also higher for non-Indigenous males than females (0.8 per 1,000 and 0.5 per 1,000 respectively).

For 2007–2014, the five-year relative survival for Aboriginal and Torres Strait Islanders diagnosed with lung cancer was 11% on average compared with their counterparts in the Indigenous population [2].  Non-Indigenous people diagnosed with lung cancer had a 16% chance on average of surviving five years compared with their counterparts in the non-Indigenous population.

In 2016, cancers of the trachea, bronchus and lung combined were the fourth leading cause of death for Aboriginal and Torres Strait Islander people (184 deaths: 107 males and 77 females) living in NSW, Qld, WA, SA and the NT, with the overall age-standardised death rate 2.1 times higher than for non-Indigenous people [47].

Lung cancer was the leading cause of cancer deaths among Aboriginal and Torres Strait Islander people between 2011 and 2015 with 705 deaths, an average of 141 deaths per year [2]. The age-standardised mortality rate for lung cancer was 1.8 times higher for Aboriginal and Torres Strait Islander people (57 per 100,000) than for non-Indigenous people (31 per 100,000).

Breast

Breast cancer was the second most commonly diagnosed cancer among Aboriginal and Torres Strait Islander people living in NSW, Vic, Qld, WA and the NT during 2009–2013: there were 771 new cases of breast cancer (females), an average of 154 cases per year [2]. During this period, the age-standardised incidence rate was lower (rate ratio 0.9) for Aboriginal and Torres Strait Islander people than non-Indigenous people (99 per 100,000 and 112 per 100,000 respectively). At the end of 2013 for Aboriginal and Torres Strait Islander people, the highest five year prevalence rate for cancer was for breast cancer (females) [2].

For 2013–2015, there were 515 Aboriginal and Torres Strait Islander females hospitalised in Australia for breast cancer (1.3 per 1,000 after age-standardisation) [29]. Aboriginal and Torres Strait Islander women were less likely to be hospitalised with breast cancer than non-Indigenous females (rate ratio 0.7).

For 2007–2014, the five-year relative survival for Aboriginal and Torres Strait Islanders diagnosed with breast cancer was 81% on average compared with their counterparts in the Indigenous population [2].  Non-Indigenous people diagnosed with breast cancer had a 90% chance on average of surviving five years compared with their counterparts in the non-Indigenous population. The five-year relative survival was lowest for the 25–44 year age group for Aboriginal and Torres Strait Islander women and increased with age. For non-Indigenous women, five-year relative survival was similar for 15–24 and 45–64 years and decreased for 65 years and older.

For 2011–2015, 171 Aboriginal and Torres Strait Islander females died from breast cancer, an average of 34 deaths per year [2]. After age-standardisation, there were 24 deaths per 100,000 for Aboriginal and Torres Strait Islander people compared with 20 per 100,000 for non-Indigenous people (rate ratio: 1.2).

The poorer outcomes for Aboriginal and Torres Strait Islander people suggest that breast cancers are diagnosed at a later stage when treatment is not as effective [26, 50].

Bowel

For 2009–2013, bowel cancer was the third most commonly diagnosed cancer among Aboriginal and Torres Strait Islander people living in NSW, Vic, Qld, WA and the NT; there were 612 new cases, an average of 122 cases per year [2]. Incidence rates were similar for Aboriginal and Torres Strait Islander people and non-Indigenous people (53 per 100,000 and 56 per 100,000 respectively). Aboriginal and Torres Strait Islander males had a bowel cancer incidence rate 1.4 times higher than for females (65 per 100,000 and 45 per 100,000 respectively). New cases of bowel cancer increased with age for the Aboriginal and Torres Strait Islander and non-Indigenous populations with the highest incidence rates being for the 65 years and over age group (243 per 100,000 and 296 per 100,000 respectively) [2]. Five-year prevalence rates at the end of 2007 were lower for Aboriginal and Torres Strait Islander people than for non-Indigenous people (rate ratio 0.7) [26].

Aboriginal and Torres Strait Islander people were less likely than non-Indigenous people to be hospitalised with bowel cancer (rate ratio 0.6) in NSW, Vic, Qld, WA, SA and NT for 2006-07 to 2010-11 [26].

For 2007–2014, Aboriginal and Torres Strait Islander people diagnosed with bowel cancer had a 58% chance on average of surviving five years compared with their counterparts in the Indigenous population [2]. Non-Indigenous people diagnosed with bowel cancer had a 67% chance on average of surviving five years compared with their counterparts in the non-Indigenous population.

For 2011–2015, Aboriginal and Torres Strait Islander people had a slightly lower age-standardised bowel cancer mortality rate than non-Indigenous people (14 per 100,000 compared with 15 per 100,000) [2].

Factors which may explain the similar incidence and lower mortality rates for bowel cancer include a reluctance to seek medical care for symptoms [51] and diagnosis at a later stage when the primary site of the cancer is no longer evident [50]. Estimated incidence and mortality rates for bowel cancer may not fully reflect the extent of the disease among Aboriginal and Torres Strait Islander people [52-54].

Prostate

For 2009 –2013, prostate cancer was the fourth most commonly diagnosed cancer among Aboriginal and Torres Strait Islander people living in NSW, Vic, Qld, WA and the NT: there were 526 new cases, an average of 105 cases per year [2]. The age-standardised incidence rate was lower (rate ratio 0.7) for Aboriginal and Torres Strait Islander males than for non-Indigenous males (108 per 100,000 and 151 per 100,000 respectively). Five-year prevalence rates, as at the end of 2007, were lower for Aboriginal and Torres Strait Islander males than for non-Indigenous males (rate ratio 0.4) [26].

Aboriginal and Torres Strait Islander males were less likely to be hospitalised with prostate cancer than non-Indigenous males (rate ratio 0.4) in NSW, Vic, Qld, WA, SA and NT in 2006-07 to 2010-11 [26].

For 2007–2014 Aboriginal and Torres Strait Islander people diagnosed with prostate cancer had an 86% chance on average of surviving five years compared with their counterparts in the Indigenous population [2]. Non-Indigenous people diagnosed with prostate cancer had a 92% chance on average of surviving five years compared with their counterparts in the non-Indigenous population.

For 2011–2015, Aboriginal and Torres Strait Islander people had a slightly lower (rate ratio: 0.9) age-standardised prostate cancer mortality rate than non-Indigenous people (24 per 100,000 and 27 per 100,000 respectively) [2].

Cervical

Cervical cancer (females) diagnosis information is sourced from pathology forms which currently do not record information on Indigenous status in most states and territories [39]. This means that reliable national data on the incidence of cancer for Aboriginal and Torres Strait Islander people are not available. Only data from NSW, Vic, Qld, WA and the NT are considered of sufficient quality and are used to examine the incidence of cervical cancer by Indigenous status.

For 2009–2013, there were 150 new cases of cervical cancer diagnosed among Aboriginal and Torres Strait Islander people living in NSW, Vic, Qld, WA and the NT, an average of 30 cases per year [2]. Cervical cancer incidence in Aboriginal and Torres Strait Islander people was higher than for non-Indigenous people (16 per 100,000 and 6.3 per 100,000 respectively). Five-year prevalence rates as at the end of 2007, were also higher for Aboriginal and Torres Strait Islander females than for non-Indigenous females (rate ratio 2.1) [26].

For 2014–15, the age-standardised hospitalisation rate in Australia for cervical cancer for Aboriginal and Torres Strait Islander females was 3.0 times higher than for non-Indigenous females (0.2 per 1,000 and 0.07 per 1,000 respectively) [46].

For 2007–2014, Aboriginal and Torres Strait Islander women diagnosed with cervical cancer had a 56% chance on average of surviving for five years compared with their counterparts in the Indigenous population [2]. Non-Indigenous women diagnosed with cervical cancer had a 72% chance on average of surviving for five years compared with their counterparts in the non-Indigenous population.

For 2011–2015, 56 Aboriginal and Torres Strait Islander women died from cervical cancer in, NSW, Vic, Qld, WA and the NT, an average of 11 deaths per year [2]. Age-standardised mortality from cervical cancer was 3.9 time higher for Aboriginal and Torres Strait Islander people than for non-Indigenous people (6.6 per 100,000 and 1.7 per 100,000 respectively).

Later stage at diagnosis and availability of treatment, especially for women in remote areas, are suggested to be factors accounting for the higher cervical cancer incidence and mortality rates found for Aboriginal and Torres Strait Islander women [39].

Prevention and management

The prevention and management of cancer is vital to the current and future health of Aboriginal and Torres Strait Islander people. It is generally accepted that for cancer prevention and management programs to be effective they require evidence based health promotion measures, public health interventions and clinical services [55]. It is important that programs for Aboriginal and Torres Strait Islander people are delivered sensitively, tailored to community needs, and implemented collaboratively [56, 57]. It is also recommended that such programs are developed in a broader context that incorporates the social determinants of health and acknowledges the impact of factors, such as poverty, culture, racism, employment and education on Aboriginal and Torres Strait Islander health [6].

Prevention

Primary prevention is designed to improve or protect the health of high risk individuals and includes public policy interventions, such as the plain packaging of cigarettes, information to support healthy lifestyles, such as physical activity and healthy diet and limited intake of alcohol, and mass media campaigns, such as quitting smoking and using sunscreens. It also includes empowering individuals, strengthening community capacity and addressing determinants of health [29]. The prevention of cancer, particularly in high risk individuals, is a key objective of many of these activities.

As described earlier, Aboriginal and Torres Strait Islander people overall have more behavioural risk factors which are known to increase the risk of developing cancer [26]. Primary prevention can prevent or delay the development of cancer in high risk individuals by:

• identifying those at high risk through the use of risk assessment tools
• delivering education programs
• promoting lifestyle modifications that focus on healthy living.

Health promotion and education have been identified as important mechanisms to help address factors impacting the health of people and communities [58]. It is recommended that health promotion and education approaches recognise and appreciate the importance of local cultures and have an emphasis on capacity building, community empowerment and local ownership. It is important that approaches to Aboriginal and Torres Strait Islander health promotion and education are appropriate, respectful, collaborative and locally suitable [57].

Education

There is a range of information and resources which are aimed at educating Aboriginal and Torres Strait Islander people about cancer, including those produced by Cancer Council Australia [59]. Some, such as workshop materials and handbooks, are aimed at health professionals to provide them with the tools necessary to inform and support their clients. Materials made directly available to consumers include flyers, DVDs and guides on how common cancers are detected and treated and, on living with cancer. Information is also produced at a jurisdictional level by Cancer Council Australia’s affiliate organisations.

One such resource was a flipchart produced by Cancer Council WA and the Western Australian Cancer and Palliative Care Network. This was intended for use by health professionals to raise awareness among Aboriginal and Torres Strait Islander people about bowel cancer and bowel cancer screening in a culturally relevant way. A study was later commissioned to evaluate the flipchart. This evaluation found that although the resource was highly acclaimed, it had been under-utilised and recommended that additional resources be produced in order to increase screening uptake in the Aboriginal community [60]. As a result, a DVD entitled Making time for bowel cancer screening was developed and a subsequent evaluation of the implementation and use of this resource commissioned [61]. Once again, while the resource was found to have been well received, there was low utilisation of the DVD [62]. More recently, Cancer Council WA have produced the Aboriginal Cancer education video which aims to increase knowledge about the importance of cancer prevention, screening, early detection and various treatment options and support services [63].

Evaluations demonstrate that possessing a health education tool, even if it is of good quality, does not ensure that the resource will be used by health professionals [64]. Health professionals regularly receive materials but the capacity and resources of practitioners, particularly those working in Aboriginal and Torres Strait Islander primary health care services, to utilise such resources in the context of other demands, is particularly limited [58]. This highlights the importance of evaluating health promotion tools to ensure they are being used to contribute to Aboriginal and Torres Strait Islander health outcomes and reduce the health disparities that currently exist [65]. Despite the acknowledged benefits and importance of evaluating how these tools have been used, only a small number of evaluations of Aboriginal and Torres Strait Islander health promotion tools have been undertaken to date.

Lifestyle modifications

Alcohol consumption, smoking, poor nutrition, being overweight or obese are known to increase the risk of developing cancer [5]. Culturally appropriate, locally supported, targeted intensive lifestyle programs are recommended for Aboriginal and Torres Strait Islander people to provide participants with the life skills, knowledge and support needed to make sustainable lifestyle changes to prevent the onset of cancer. Healthy lifestyle programs must be considered in a broader context that incorporates the social determinants of health, and population-based approaches to health improvement. This approach recognises that the risk of developing chronic disease is not only directly influenced by an individual’s behaviours but also by cultural, historical, social, geographical, economic and community factors, and government health policies and services [6].

Reviews of healthy lifestyle programs addressing smoking, physical activity and nutrition among Aboriginal and Torres Strait Islander people found that programs can have positive health effects [6, 66]. Although there is limited evidence for long-term behavioural change following health promotion interventions, a small study of urban Aboriginal and Torres Strait Islander young people found some change in knowledge and attitudes following health promotion interventions in school [67]. At the heart of health promotion is effective communication that takes into account language and world view to support people to live healthy lives [68]. Initiatives are more likely to be effective if they are initiated and managed by the community, with technical (and sometimes financial) support being provided by external organisations [6].

In 2014–15, all Commonwealth funded Aboriginal and Torres Strait Islander primary health care services offered health promotion/education programmes aimed at lifestyle modifications [68]. Many of these offered healthy lifestyle programs (81%) and alcohol use treatment/prevention awareness programs (40%). They also offered a range of health promotion activities, such as physical activity/healthy weight activity (73%) and living skills such as cooking and nutrition) (61%).

Lifestyle modification programs have been implemented at a local level by the Regional Tackling Smoking Healthy Lifestyle Teams. These were established as part of the Tackling Indigenous Smoking program, a component of the Australian government’s Indigenous Australians’ Health Programme [69]. The regional teams work to raise awareness of the health impacts of tobacco smoking and chronic disease in Aboriginal and Torres Strait Islander communities, to actively promote positive lifestyle changes and to assist timely access to appropriate health services as needed. In WA, Tackling Smoking – a development of the Midwest Region Wide Tobacco Strategy and Campaign implemented a multi-faceted promotional campaign using radio, newspaper, community events and the distribution of promotional materials. Results from a short-term evaluation indicated early success and an increase in calls to the Aboriginal Quitline following the campaign [68].

Broader initiatives that extend beyond the immediate scope of the health sector have also been proposed to encourage healthier lifestyles and therefore help reduce cancer in the Aboriginal and Torres Strait Islander population. They include [70]:

• increasing availability of and access to healthy foods (e.g. in stores and through community gardens and traditional food projects)
• limiting advertising of alcohol and tobacco products
• using taxation as a lever to increase the price of alcohol and tobacco
• encouraging physical activity through partnerships with local councils.
• providing clearer food labelling and education regarding the nutritional value of foods, such as the Health Star Rating social marketing campaign which includes a specific focus on out-of-home and social media aimed at Aboriginal and Torres Strait Islander audiences [68].

Management

Providing appropriate, effective cancer management for Aboriginal and Torres Strait Islander people depends on: access to a broad range of health services that meet the needs of Aboriginal and Torres Strait Islander patients [56, 71, 72]; and coordinated interaction between patients, healthcare providers and the healthcare system [73, 74].

Recommendations for improving cancer management for Aboriginal and Torres Strait Islander people include:

• early detection of cancer
• availability of good quality primary and tertiary health care
• access to health care services including specialist cancer services.

Health care

Mainstream (including specialist cancer services) and community controlled primary health care services in Australia play a critical role in the delivery of cancer care at a local level. To meet the needs of Aboriginal and Torres Strait Islander people, primary health care services have to deliver care that is both competent and culturally appropriate [75]. Culture and identity are central to Aboriginal and Torres Strait Islander perceptions of health, which encompass both the physical wellbeing of the individual, and the social, emotional and cultural the wellbeing of the community. Services that deliver primary health care to Aboriginal and Torres Strait Islander people must recognise the importance of community values, such as connection to culture, family and land, and opportunities for self-determination. Primary health care services that are flexible in their delivery of services for Aboriginal and Torres Strait Islander people to incorporate cultural protocols, allowing a social view of health and making the service more welcoming, have the potential to improve Aboriginal and Torres Strait Islander health and wellbeing [76].

Providing cancer services that meet the needs of Aboriginal and Torres Strait Islander patients is a critical element in improving outcomes [71]. The National Aboriginal and Torres Strait Islander Cancer Framework (the Framework) has identified that ‘culturally safe services and a culturally competent workforce…. are core requirements for improving cancer outcomes’ [56], highlighting the essential role cancer service providers have in encouraging and maintaining Aboriginal and Torres Strait Islander people’s attendance at cancer services. Culturally appropriate cancer care is based upon a strong therapeutic relationship between patients and tertiary and primary health professionals [73, 74] which requires cross-cultural knowledge and expert skills on the part of health professionals [74]. It is recommended that cultural competence training is made available to all staff members to help improve communication and quality of care provided [77, 78] and to ensure that Aboriginal and Torres Strait Islander people are not discouraged from presenting [79]. Health care providers who understand the beliefs and perspectives of Aboriginal and Torres Strait Islanders regarding cancer [20, 80] will be better placed to build an appropriate therapeutic relationship in cancer-related consultations.

A number of cultural awareness training initiatives have been introduced which aim to enhance the understanding of primary care health professionals about the needs of their Aboriginal and Torres Strait Islander clients. One study of such an initiative 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 [81]. Others studies reported similarly successful initiatives which resulted in increased numbers of Aboriginal women participating in breast screening programs [82, 83].

Aboriginal and Torres Strait Islander Health Workers have been identified as being particularly important in the delivery of effective and culturally safe health care to Aboriginal and Torres Strait Islander patients [84-87]. The Framework makes it clear that improved availability of Aboriginal and Torres Strait Islander Health Workers, with both community knowledge and clinical knowledge, is an important enabler in providing high quality care for Aboriginal and Torres Strait Islander people with cancer [56]. Numerous studies have highlighted the many practical benefits of having Aboriginal and Torres Strait Islander health professionals who can provide culturally safe health care to Aboriginal and Torres Strait Islander patients and educate other health professionals on the delivery of culturally appropriate care [84, 86-88]. In a study of Aboriginal and Torres Strait Islander cancer patients receiving treatment at four major Qld public hospitals, the Indigenous Health Liaison Officers were the most commonly used of all hospital services available, highlighting the importance of their role in supporting Aboriginal and Torres Strait Islander cancer patients [89].

Aboriginal and Torres Strait Islander Community Controlled Health Services play an important role in delivering essential primary health care service to Aboriginal and Torres Strait Islander people in a culturally secure manner [29]. Health services run by Aboriginal and Torres Strait Islander communities provide holistic care that is relevant to their local community and reflects the Aboriginal view of health which addresses not just the physical wellbeing of an individual but the social, emotional and cultural wellbeing of the whole community [90]. Such services can deliver effective prevention and management programs that enable lifestyle changes that are maintained and supported by the community.

Aboriginal and Torres Strait Islander Community Controlled Health Services

Aboriginal and Torres Strait Islander Community Controlled Health Services are located in all jurisdictions and are funded by the federal, state and territory governments and other sources [91]. They are planned and governed by local Aboriginal and Torres Strait and Torres Strait Islander communities and aim to deliver holistic and culturally appropriate health and health-related services. Services vary in the primary health care activities they offer. Possible activities include: diagnosis and treatment of illness or disease; management of chronic illness; transportation to medical appointments; outreach clinic services; immunisations; dental services; and dialysis services.

Aboriginal and Torres Strait Islander cancer support groups have been identified as important for improving cancer awareness and increasing participation in cancer screening services [92]. Aboriginal women attending these support groups have reported an increased understanding of screening and reported less fear and concern over cultural appropriateness, with increases in screening rates [19]. Support groups have also been found to help in follow up and ongoing care for cancer survivors [19, 93], particularly where they are shaped to meet the needs of Aboriginal and Torres Strait Islander people [73, 94].

In recognition of their specific care requirements, a tool has been developed to assess the unmet supportive care needs of Aboriginal and Torres Strait Islander patients diagnosed with cancer – the Supportive care needs assessment tool for Indigenous people (SCNAT-IP). These needs include specific information, psychological counselling, assistance with travel to tertiary treatment and financial assistance. The tool was used in a study based in Qld which assessed cancer patients’ needs within three months and at six months post-diagnosis. It found that as supportive care needs change over time, they should be monitored throughout the patient’s cancer journey [95].

In addition to high quality primary health care, which is key to early diagnosis and linkage to cancer service pathways [79], effective cancer management requires affordable and timely access to tertiary specialist services for treatment. Several studies have shown poorer survival rates for cancer among Aboriginal and Torres Strait Islander people [27, 96-98]. A study of lung cancer patients in Qld found that most of the survival deficit could be explained by a disparity in treatment [99]. Not only are Aboriginal and Torres Strait Islander people less likely to have treatment for cancer (surgery, chemotherapy and radiotherapy), they also tend to wait longer for surgery [69]. It is suggested that appropriate access to tertiary services may be facilitated through investment in Telehealth [79, 100].

Models of care that promote integration between the primary and tertiary care settings are recommended for all patients with cancer [101]. Gaps in diagnosis, treatment and survival between Aboriginal and Torres Strait Islander people and non-Indigenous people indicate that current programs and models of service delivery often do not adequately meet the needs of Aboriginal and Torres Strait Islander people with cancer [79]. Improved links between Aboriginal and Torres Strait Islander communities, primary health care providers and mainstream cancer care services could improve Aboriginal and Torres Strait Islanders’ engagement with tertiary cancer care services and ultimately contribute to enhanced outcomes [74].

A Qld study found for Aboriginal and Torres Strait Islander people cancer survivors that it is important to establish a strong therapeutic relationship between patients and tertiary and primary health professionals [73]. Discharge summaries or care plans at discharge for survivors and GPs and the provision of access to a range of allied health services can assist survival outcomes. It is also necessary to recognise the diverse range of needs and preferences of cancer survivors.

Barriers

A number of factors have been identified as preventing early detection of cancer in Aboriginal and Torres Strait Islander people. These factors, which contribute to the delayed diagnosis of cancer, include contextual factors, such as the intergenerational impact of colonisation, racism and socioeconomic deprivation, which have negatively impacted on Aboriginal people’s trust of healthcare professionals. Other factors are health service-related, including low accessibility to health services, long waiting periods, inadequate numbers of Aboriginal professionals and high staff turnover; and issues related to patient appraisal of symptoms and decision-making, such as fear of cancer and denial of symptoms have resulted in delays in seeking health care [79].

Distance to primary health care services and poor availability of services in remote areas, including cancer services [102], have been identified as presenting barriers to accessing primary health care services. These barriers are experienced, in particular, by Aboriginal and Torres Strait Islander people [103]. It is generally accepted that inadequate access to primary health care services contributes to the poor health status of Aboriginal and Torres Strait Islander people [91].

The lack of cancer services in regional and remote areas has been noted as contributing to the particularly poor outcomes of patients living in rural areas [102, 104, 105]. The larger numbers of Aboriginal and Torres Strait Islander people living in remote areas relative to non-Indigenous people means that they are disproportionately disadvantaged. Factors such as the location and accessibility of a health service have been shown to influence the extent to which Aboriginal and Torres Strait Islander people present for diagnosis and continue with treatment [88, 106].

In addition to logistical difficulties, other barriers to the use of cancer health services by Aboriginal and Torres Strait Islander people have been described [107] and include:

• costs associated with consultation fees, medicines, transport and lost wages [103]
• poorer access to community controlled health organisations in metropolitan and regional areas compared to remote areas [103]
• poor collaboration between different parts of the health system [103]
• fear or lack of trust of mainstream health services [20, 21, 108-110]
• cultural misunderstandings, poor communication and experiences of discrimination by mainstream practitioners [20, 21, 108-110]
• fatalistic or differing cultural beliefs about cancer, including feelings of shame [20, 21, 108-110].

Programs and services

Selected information on some of the key programs and services aimed at preventing, treating and managing cancer are set out below. Initiatives operating at a national level are included, but the information does not cover all programs and services in operation.

Current national programs

Screening programs

Screening programs are important mechanisms in the early detection of cancer as they increase people’s awareness of cancer symptoms and encourage them to seek medical attention [19]. Such programs are an important strategy in reducing the incidence and mortality from these cancers as early detection provides an opportunity for treatment which can lead to significantly improved outcomes.

In Australia, there are a number of Government-funded, population based screening activities for the early detection of cancer. These are BreastScreen Australia, the National Bowel Cancer Screening Program (NBCSP) and the National Cervical Screening Program (NSCP). These programs are available free of charge to those who are eligible [111]. Participation in these programs is strongly encouraged for early detection of disease, providing an opportunity for timely intervention to reduce invasive disease and significantly improve outcomes and mortality from these cancers.

Lower participation by Aboriginal and Torres Strait Islander people than non-Indigenous people is reported in all three national population cancer screening programs [26]. The challenges associated with engaging Aboriginal and Torres Strait Islander people in screening programs are complex and lower participation cannot be attributed purely to socio-demographic factors [112]. Multiple barriers to participation exist and include individual knowledge and experiences and limitations in the screening program itself [81, 113, 114]. Another issue is that cancer risk may not be the most salient and immediate concern for vulnerable people who are dealing with other serious health and social issues [115, 116]. In recognition of the particular requirements of Aboriginal and Torres Strait Islander people, informative materials, such as flyers and DVDs, which cater specifically for Aboriginal and Torres Strait Islander consumers have been developed [68].

Breast cancer

BreastScreen Australia

The national breast screening program, BreastScreen Australia, was established in 1991 as the National Program for the Early Detection of Breast Cancer [117]. The program aims to reduce morbidity and mortality from breast cancer through early detection using screening mammography. The federally-funded screening program provides free two-yearly screening mammograms to women aged 40 and over, and actively invites women aged 50–74 years to have a screening. The mammogram is performed at a screening unit which can be operated through a hospital, health service or a mobile van that travels to rural and remote locations across Australia.

The lower survival for breast cancer among Aboriginal and Torres Strait Islander women noted earlier can be partly explained by lower participation in the BreastScreen Australia early detection program [117, 118]. In 2014-15, participation of Aboriginal and Torres Strait Islander women in the program was 37% compared with 53% for non-Indigenous women. This level of participation for Aboriginal and Torres Strait Islander women has been consistent for a number of years.

Bowel cancer

National Bowel Cancer Screening Program (NBCSP)

In 2006, Australia introduced a formal, government-funded, population-based bowel cancer screening program [119]. The NBCSP aims to reduce morbidity and mortality from bowel cancer by screening target population groups for early detection of the disease. Eligible people are sent a faecal occult blood test (FOBT) kit which is used to detect microscopic traces of blood in a person’s faeces that may be a sign of bowel cancer. The test requires people to complete a FOBT in their own home and send the sample to a pathology laboratory for analysis. The program is currently being expanded so that by 2020 all Australians aged between 50 and 74 will receive a FOBT kit every two years.

It is estimated that the participation rate for Aboriginal and Torres Strait Islander people aged 50–74 who were invited to participate in 2015–2016 was 20%; this compares with an estimated participation rate for non-Indigenous people of 43% [119].

Suggested reasons for this lower rate of participation of Aboriginal and Torres Strait Islander people in the NBSCP are listed below [60, 115]:

Individual

• poor knowledge and awareness of bowel cancer and screening options
• language/literacy barriers
• fatalistic beliefs regarding cancer
• absence of symptoms of cancer
• embarrassment about the sensitive nature of the topic and
• lack of confidence in carrying out the test.

Health service

• lack of support from health workers
• lack of health promotion materials in Indigenous languages and
• poor understanding of the cultural needs of Aboriginal and Torres Strait Islander people.

Screening program

• recruitment via Medicare
• distribution of screening kits directly to participants via post
• recording of Indigenous status via self-identification at time of screening and
• necessity for participants to have access to privacy and appropriate storage facilities.

The NBCSP relies on self-reporting of Indigenous status on registration forms and so if this information is missing it could affect the accuracy of the participation rate calculated. This could lead to the accuracy of analysis conducted and the conclusions drawn not being fully accurate.

In 2015–2016, Aboriginal and Torres Strait Islander participants in the NBCSP had a higher screening positivity rate than non-Indigenous people (11% compared with 8.2%) [119]. They also had a lower follow up diagnostic assessment rate (53%) than non-Indigenous people (68%). There was a longer median time between positive screen and assessment for Aboriginal and Torres Strait Islander participants (76 days) than for non-Indigenous people (54 days).

Cervical cancer

National Cervical Screening Program (NCSP)

The NCSP aims to detect and treat abnormalities in the precancerous stage before they possibly progress to cervical cancer [39]. Cervical screening is not provided by a customised service, but forms part of primary health care. Therefore, women choosing to have a cervical screening test through any health-care provider are considered to be part of the NCSP.

The NCSP previously recommended that all women aged 18 to 69 who have been sexually active, including women who have had the HPV vaccine, have a cervical screening test (the Pap smear test) every two years. Changes to the NCSP took place from December 2017 and all women aged 25 to 75 years are now invited to undertake an HPV (cervical screening) test every 5 years [39]. While the current Pap smear test can detect abnormal cell changes, the new cervical screening test will detect the HPV infection that can cause the abnormal cell changes, prior to the development of cancer. HPV vaccinated women will still require cervical screening as the HPV vaccine does not protect against all types of HPV that cause cervical cancer. A national cancer screening register has been established to support the renewed program.

National participation data for Aboriginal and Torres Strait Islander women in cervical screening is not available as Indigenous status is not included on all pathology forms which provide the information for screening registers [39]. However, progress in this area is being made through the Aboriginal and Torres Strait Islander primary health-care national key performance indicators (nKPIs) data collection which indicates that 28% of regular female Aboriginal and Torres Strait Islander clients had a cervical screening test in the two years as at June 2016; 36% had a cervical screening test in the previous three years; and 44% had a screening test in the previous five years [120].

These findings are confirmed by studies in Qld [121, 122] which suggest that Aboriginal and Torres Strait Islander women are well under-screened and the participation gap between Aboriginal and Torres Strait Islander and non-Indigenous women stands at between 20–30%. This gap, and the resulting failure to detect abnormalities in the precancerous stage, may account for the higher cervical cancer incidence and mortality rates found for Aboriginal and Torres Strait Islander women. Increasing participation in cervical screening to detect precancerous abnormalities leads to the prevention of cancers developing and reducing the incidence of malignant disease [39].

Increasing participation in screening programs

The need for flexibility in delivery of early detection services has been acknowledged by some services who have designed strategies and initiatives which are culturally sensitive and appropriate to the knowledge, attitudes and beliefs of Aboriginal and Torres Strait Islander people. BreastScreen Australia is noted for being particularly innovative and accommodating. BreastScreen workers liaise closely with Aboriginal Health Workers and Aboriginal and Torres Strait Islander community groups to increase acceptance of screening [117, 123]. In addition, it arranges group bookings for Aboriginal and Torres Strait Islander women who would prefer to attend as a group and some locally based programs allow women to ‘drop in’ or attend as last minute clients – these have been identified as key facilitators to promoting attendance [81]. Many state and territory BreastScreen programs provide transport to and from screening clinics (particularly for those living in remote regions). This has been frequently shown to be another useful facilitator and operates in many locations [81, 113]. BreastScreen WA’s mobile screening service is another effective means of circumventing the logistical obstacles many Aboriginal and Torres Strait Islander women face.

The results of a project in Qld, Closing the Gap in Breast Cancer Screening, confirms that the existing ‘one-size-fits-all’ model may not necessarily suit Aboriginal and Torres Strait Islander women [117]. This project aimed to address barriers to screening for Aboriginal and Torres Strait Islander women through culturally appropriate messages, art shows and partnerships with local Aboriginal and Torres Strait Islander groups, in order to build trust, educate and support Aboriginal and Torres Strait Islander women to attend BreastScreen Australia. The project reported an increase in Aboriginal and Torres Strait Islander participation from 49% to 56% in 2 years.

There has been criticism of the way in which cancer screening programs developed for the general population work for the Aboriginal and Torres Strait Islander populations. For example, Christou et al noted that there were many barriers to screening uptake as well as follow-up and treatment that arose from both socio-cultural and behavioural barriers affecting the individual as well as structural barriers related to access, economic issues and provider related [115]. In response to such criticism, the Implementation Plan for the National Aboriginal and Torres Strait Islander Health Plan 2013–2023 aims to develop a more flexible health system to better support Aboriginal people [90]. This demonstrates that the need for adaptability in the delivery of health care is being recognised.

The need for flexibility in the delivery of early detection services to Aboriginal and Torres Strait Islander people is underlined by the introduction of the National Indigenous Bowel Screening Project [124]. This has been initiated with the aim of developing an effective national approach to address bowel cancer awareness and screening for Aboriginal and Torres Strait Islander people [68]. Starting from 2016–2017, three years of funding has been allocated to pilot and evaluate a range of strategies to increase NBCSP participation in up to 50 Aboriginal and Torres Strait Islander primary health care services to determine the most effective model/strategies for potential national implementation. The pilot is underway and with participating sites having screening kits which are offered by health professionals as an alternative to the existing direct mail approach and will assess different levels of implementation training and support for participating services.

National initiatives to improve cancer care

There are a number of organisations which have initiatives in place aimed at improving cancer care in primary care settings. These offer a range of services including providing information and education to consumers and health professionals and providing practical, emotional and financial support. Most charge no fee for their service and many are staffed by volunteers. Some have initiatives developed specifically for Aboriginal and Torres Strait Islander people.

• Cancer Australia – works to reduce the impact of cancer on Aboriginal and Torres Strait Islander people [125] by:

• raising awareness of risk factors and promoting awareness and early detection for the community
• developing evidence-based information and resources for Aboriginal and Torres Strait Islander people affected by cancer, such as My lung cancer pathway [126]
• providing evidence-based cancer information and training resources to Aboriginal and Torres Strait Islander Health Workers
• increasing understanding of best-practice health care and support, and
• supporting research.

• Cancer Council Australia and the Cancer Councils in each jurisdiction – among the activities they undertake are:

• providing cancer research grants
• providing information on all aspects of cancer
• running detection and prevention programs to reduce the risk of cancer
• coordinating cancer support groups, services and programs
• organising events to raise funds to support cancer control activities
• providing information and resources for the Aboriginal and Torres Strait Islander community and health workers [59].

• Many Cancer Councils have also increasingly become engaged in issues related to the disparities in cancer outcomes for Aboriginal and Torres Strait Islander people [127, 128].
• Breast Cancer Network – the peak national organisation for those affected by breast cancer supports, informs, represents and connects people affected by breast cancer [129].
• McGrath Foundation – raises money to fund specialist McGrath Breast Care Nurses who manage the care of breast cancer patients throughout the course of their treatment [130].
• Leukaemia Foundation – funds research and provides free services to support people with blood cancer and related blood disorders, and their families [131].
• The National Indigenous Cancer Network – established to improve outcomes for Indigenous people with cancer, including their carers, families and communities. NICaN brings together Indigenous audiences, cancer survivors, service providers, researchers and health professionals, the private sector and government organisations (http://www.nican.info).

Policies and strategies

There are very few national policies and strategies that focus specifically on cancer in the Aboriginal and Torres Strait Islander population. The National Aboriginal and Torres Strait Islander Cancer Framework is therefore significant as the first national approach to addressing the gap in cancer outcomes that currently exists between Aboriginal and Torres Strait Islander people and the non-Indigenous population [132]. However, over the past 30 years, there have been a number of relevant strategies and frameworks developed addressing cancer in the general population, and broader aspects of Aboriginal and Torres Strait Islander health. A selection of national policy developments relevant to addressing cancer among Aboriginal and Torres Strait Islander people are described briefly below.

Selected national policy developments relevant to addressing cancer among Aboriginal and Torres Strait Islander people

It was not until the late 1980s that national cancer control strategies and policies began to be developed [133]. In 1987, the first National Cancer Prevention Policy for Australia, was published by the Australian Cancer Society (ACS) (now the Cancer Council Australia) based on a series of expert workshops [134]. It outlined what prevention activities were currently being undertaken, what should be undertaken and suggested a number of goals, targets and strategies in the areas of cancer prevention and early detection and screening. This policy has been updated many times over the years [133] and is still in publication as the National cancer control policy [135].

The following year, in 1988, the Health for all Australians report, commissioned by the Australian Health Ministers’ Advisory council (AHMAC), recognised that cancers could be influenced by primary or secondary prevention strategies [136]. The report recommended nine goals and 15 targets related to cancers, based on those put forward by the National Cancer Prevention Policy for Australia. Cancer prevention and strategies relating to breast, cervical and skin cancer and tobacco smoking were recommended as initial priorities under the National Program for Better Health. These were then endorsed at the Australian Health Ministers Conference and funding was provided.

In 1996, cancer control was identified as one of four National health priority areas (NHPA). This led, the following year, to the publication of the First report on national health priority areas 1996, which outlined 26 indicators spanning the continuum of cancer care, and included outcome indicators, indicators relating to patient satisfaction and the creation of hospital based cancer registries [137].

In 1998, the first NHPA cancer control report was produced [138]. It identified a number of opportunities for improvements in cancer control, including within ‘special populations such as Indigenous people’ [138].

In 2003, the report Optimising cancer care in Australia was jointly developed by The Cancer Council Australia, the Clinical Oncological Society of Australia (COSA) and the National Cancer Control Initiative (NCCI), with strong consumer input [139]. This report made 12 key recommendations, including that the needs of Aboriginal and Torres Strait Islander people be the focus of efforts to bridge gaps in access to and utilisation of culturally sensitive cancer services.

In 2008, the National Cancer Data Strategy for Australia aimed to provide direction for collaborative efforts to increase data availability, consistency and quality [140]. It reported that although Indigenous status is recorded by cancer registries, data quality is poor, and recommended that the quality of Indigenous markers in hospital and death statistics collections needs to improve if cancer registries are to have better data.

In 2011, Cancer Australia published the first Cancer Australia strategic plan 2011–2014, which aimed to identify future trends in national cancer control and to outline strategies for the organisation to improve outcomes for all Australians diagnosed with cancer [141]. It was followed in 2014, by the Cancer Australia Strategic Plan 2014–2019, which had an increased focus on improving quality of cancer care and outcomes for Aboriginal and Torres Strait Islander people [142].

In 2013, the National Aboriginal and Torres Strait Islander Health Plan 2013–2023 (the Health plan) was developed to provide a long-term, evidence-based policy framework approach to closing the gap in disadvantage experienced by Aboriginal and Torres Strait Islander people [143]. The Health plan emphasises the importance of culture in the health of Aboriginal and Torres Strait Islander people and the rights of individuals to a safe, healthy and empowered life. Its vision is for the Australian health system to be free of racism and inequity and all Aboriginal and Torres Strait Islander people to have access to health services that are effective, high quality, appropriate and affordable. This led to the publication of the Implementation plan for the National Aboriginal and Torres Strait Islander Health Plan 2013–2023 in 2015 [90], which outlines the strategies, actions and deliverables required for the Australian Government and other key stakeholders to implement the Health plan.

The first National Aboriginal and Torres Strait Islander Cancer Framework (the Framework­) was released in 2015, to address disparities and improve cancer outcomes for Aboriginal and Torres Strait Islander people [56]. It provides strategic direction by setting out seven priority areas for action and suggests enablers that may help in planning or reviewing strategies to address each of the priority areas. The Framework aims to improve cancer outcomes for Aboriginal and Torres Strait Islander people by ensuring timely access to good quality and appropriate cancer related services across the cancer continuum.

In 2016, Cancer Australia released the National Framework for Gynaecological Cancer Control to guide future directions in national gynaecological cancer control to improve outcomes for women affected, as well as their families and carers [144]. It aims to ensure the provision of best practice and culturally appropriate care to women across Australia by offering strategies across six priority areas, of which one pertains specifically to improving outcomes for Aboriginal and Torres Strait Islander women.

In 2018, Cancer Australia released the Lung Cancer Framework: Principles for Best Practice Lung Cancer Care in Australia [145]. It aims to improve the outcomes and experiences of people affected by lung cancer by supporting the uptake of five principles: patient-centred care; multidisciplinary care; timely access to evidence-based care; coordination, communication and continuity of care and data-driven improvements.

Future directions

The National Aboriginal and Torres Strait Islander Cancer Framework (the Framework­) provides guidance for individuals, communities, organisations and governments [56]. The Framework was developed in partnership with Menzies School of Health Research, and was informed by a systematic review of the evidence and extensive national consultations. The parties involved in these consultations included Aboriginal and Torres Strait Islander people affected by cancer, health professionals working with Aboriginal and Torres Strait Islander people and experts in Indigenous cancer control. The Framework outlined seven evidence-based priority areas for action as follows:

• improving knowledge and attitudes about cancer
• focusing 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
• strengthening the capacity of cancer-related services to meet the needs of Aboriginal and Torres Strait Islander people.

Each of these priorities was accompanied by a number of enablers to assist in planning or reviewing strategies to address that priority. The enablers provide flexible approaches to meeting the priorities that allow for local context and needs.

The development of the Framework has been responsible for gathering national support and agreement on the priorities and for creating a high level of expectation around the ability to address the growing cancer disparity [146]. Cancer Australia has since commenced a number of projects and initiatives that focus on one or more of the priorities identified by the Framework. One project aims to identify critical success factors and effective approaches to increasing mammographic screening participation for Aboriginal and Torres Strait Islander women [147]. A leadership group on Aboriginal and Torres Strait Islander cancer control tasked with driving a shared agenda to improve cancer outcomes has also been established [148]. In addition, the development of a monitoring and reporting plan for the Framework is underway.

Quality data are critical to understanding the variations in cancer care and outcomes of Aboriginal and Torres Strait Islander people, and to inform policy, service provision and clinical practice initiatives to improve those outcomes. However, it has been repeatedly reported in the literature and by the Framework, that current data are inadequate or incomplete, and there is a significant need for improved local, jurisdictional and national data on Aboriginal and Torres Strait Islander people with cancer [56, 149-151]. In particular, the need for primary healthcare services to address the under identification of Aboriginal and Torres Strait Islander status in data registries. A project currently underway in SA, which is likely to have relevance to other regions, aims to develop an integrated comprehensive, cancer monitoring and surveillance system for Aboriginal people, while also incorporating their experiences with cancer services [149].

Both the Framework and the literature have identified a need for a more supportive and culturally appropriate approach across the cancer care continuum for Aboriginal and Torres Strait Islander people [56, 77, 151, 152]. The Wellbeing Framework for Aboriginal and Torres Strait Islander Peoples Living with Chronic Disease, (Wellbeing framework), aims to assist healthcare services to improve the quality of life and quality of care, as well as health outcomes, for Aboriginal and Torres Strait Islander people living with chronic disease [153]. This addresses the identified need for more supportive and culturally appropriate care as it attempts to incorporate the social, emotional, cultural and spiritual aspects of health and wellbeing, as well as the physical aspects.

The Wellbeing framework is underpinned by two core values, which are considered fundamental to the care of Aboriginal and Torres Strait Islander people [153, 154]. These core values highlight that wellbeing is supported by:

• upholding people’s identities in connection to culture, spirituality, families, communities and country and
• having culturally safe primary healthcare services in place.

The Wellbeing framework consists of four essential elements for supporting the wellbeing of Aboriginal and Torres Strait Islander people living with chronic disease [153, 154]. These show the importance of having:

• locally defined, culturally safe primary health care services
• appropriately skilled and culturally competent health care teams
• holistic care throughout the lifespan
• best practice care that addresses the particular needs of a community.

The Wellbeing framework suggests a number of practical and measurable applications for applying or achieving the underlying principles of each element. It has the capacity to be adapted by primary healthcare services, in consultation with the communities they serve, to more effectively meet the chronic and cancer care needs of their communities [153, 154].

The Leadership Group on Aboriginal and Torres Strait Islander Cancer Control was established in 2016-17 to:

• provide strategic advice and specialist expertise in Indigenous cancer control
• encourage cross-sector collaboration in addressing the priorities in the National Aboriginal and Torres Strait Islander Cancer Framework
• share knowledge across the sector to leverage opportunities.

Concluding comments

Despite considerable improvements in cancer detection and treatment over recent decades, Aboriginal and Torres Strait Islander people diagnosed with cancer generally experience poorer outcomes than non-Indigenous people for an equivalent stage of disease [27, 97]. This is highlighted by statistics which showed that, despite lower rates of prevalence and hospitalisation for all cancers combined for Aboriginal and Torres Strait Islander people compared with non-Indigenous people, between 1998 and 2015, the age-standardised mortality rate ranged from 195 to 246 per 100,000 while the rate for non-Indigenous people decreased from 194 to 164 per 100,000 [2].

Furthermore for 2007–2014, while 65% of non-Indigenous people had a chance of surviving five years after receiving a cancer diagnosis, only 50% of Aboriginal and Torres Strait Islander people did [2].

The disparities are particularly pronounced for some specific cancers – for lung cancer the age-standardised incidence rate for Aboriginal and Torres Strait Islander people was twice that for non-Indigenous people, while for cervical cancer the rate was 2.5 times the rate for non-Indigenous people for 2009–2013 [2].

The factors contributing to these poorer outcomes among Aboriginal and Torres Strait Islander people are complex. They reflect a broad range of historical, social and cultural determinants and the contribution of lifestyle and other health risk factors [6], combined with lower participation in screening programs, later diagnosis, lower uptake and completion of cancer treatment, and the presence of other chronic diseases [27, 98, 155]. Addressing the various factors that contribute to the development of cancer among Aboriginal and Torres Strait Islander people is important, but improvements in some of these areas, particularly in reducing lifestyle and behavioural risk factors, are likely to take some time to be reflected in better outcomes.

Current deficiencies in the prevention and management of cancer suggest there is considerable scope for better services that should lead to improvements in the short to medium term. Effective cancer prevention and management programs that are tailored to community needs and are culturally appropriate are vital for the current and future health of Aboriginal and Torres Strait Islander people [56, 57]. Providing effective cancer prevention and management also requires improved access to both high quality primary health care services and tertiary specialist services. Effective and innovative programs for the prevention and management of cancer among Aboriginal and Torres Strait Islander people do exist on an individual basis and, in some cases, the efforts made to engage Aboriginal and Torres Strait Islander people in screening programs, in particular, are impressive. However, a more coordinated, cohesive national approach is also required.

Reducing the impact of cancer among Aboriginal and Torres Strait Islander people is a crucial aspect in ‘closing the gap’ in health outcomes. The National Aboriginal and Torres Strait Islander cancer framework [56] may be an important first step in addressing the current disparity in cancer outcomes and raises the probability of real progress being made. Cancer Australia has recently released the Optimal Care pathway for Aboriginal and Torres Strait Islander people which recommends new approaches to cancer care and with the aim of reducing disparities and improving outcomes and experiences for Aboriginal and Torres Strait Islander people with cancer [156]. As encouraging as these developments are, substantial improvements will also depend upon the effective implementation of comprehensive strategies and policies that address the complexity of the factors underlying the disadvantages experienced by Aboriginal and Torres Strait Islander people. Action beyond the health service sector that addresses the broader historical, social and cultural determinants of health are also required if real progress is to be made [6].

Abbreviations

AATSIHS – Aboriginal and Torres Strait Islander Health Survey

AIHW – Australian Institute of Health and Welfare

BEACH – Bettering the Evaluation and Care of Health

DALY  –  disability-adjusted life years

DNA – Deoxyribonucleic acid

GP – General practitioner

NHPA – National health priority areas

HPV  – Human Papilloma Virus

NICAN – National Indigenous Cancer Network

NBCSP – National Bowel Cancer Screening Program

NSCP – National Cervical Screening Program

RR – Rate ratio

YLD – years lived with a disability

YLL – years of life lost

States and Territories

ACT – Australian Capital Territory

nKPI –  National key performance Indicator

NSW – New South Wales

NT – Northern Territory

Qld – Queensland

SA – South Australia

Tas – Tasmania

Vic – Victoria

WA – Western Australia

Appendix 1: Data sources and limitations

The statistical information provided in this review draws on data from a number of sources. The various limitations associated with the data are discussed briefly below:

Incidence

Data on incidence of cancer among Aboriginal and Torres Strait Islander people is typically only available for NSW, Vic, Qld, WA and the NT, as these jurisdictions have sufficient levels of identification and sufficient incidence of cancer to support analysis [2]. Due to the incomplete identification of Aboriginal and Torres Strait Islander status, the incidence figures may underestimate the true difference between Aboriginal and Torres Strait Islander and non-Indigenous rates.

Prevalence

Data on prevalence of cancer among Aboriginal and Torres Strait Islander people is typically only available for NSW, Vic, Qld, WA and the NT, as these jurisdictions have sufficient levels of identification and sufficient prevalence of cancer to support analysis [2]. Age-standardised prevalence figures by age and gender for Aboriginal and Torres Strait Islander people are available to the end of 2013. Due to the incomplete identification of Aboriginal and Torres Strait Islander status, the prevalence figures may underestimate the true difference between Aboriginal and Torres Strait Islander and non-Indigenous rates.

Health service utilisation

Hospitalisation figures can provide information about the impact of chronic diseases (such as cancer) on a population, but should be interpreted with caution. Hospitalisation figures are for ‘separations’, and as there can be multiple separations for the same individual, hospital records do not necessarily reflect the prevalence of a disease in the population [46]. Due to the incomplete identification of Aboriginal and Torres Strait Islander status, the hospitalisation figures may underestimate the true difference between Aboriginal and Torres Strait Islander and non-Indigenous rates.

The overall quality of data provided for Indigenous status varies between states and territories. For analysis and reporting purposes, Indigenous identification in hospital statistics has been considered adequate in all jurisdictions since 2013–14 [46]. Prior to this, Indigenous identification in hospital statistics was considered adequate for NSW, Vic, Qld, WA, SA and public hospitals in the NT.

Mortality

Death data for Aboriginal and Torres Strait Islander people are typically only available for NSW, Qld, WA, SA and the NT, as these jurisdictions have sufficient levels of identification and sufficient numbers of deaths to support analysis [2]. Due to the incomplete identification of Aboriginal and Torres Strait Islander status, the mortality figures may underestimate the true difference between Aboriginal and Torres Strait Islander and non-Indigenous rates.

Burden of disease

As noted above, the quality of Indigenous status in cancer incidence, prevalence and mortality data varies by jurisdiction and year of collection and may impact upon the fatal and non-fatal burden estimates for cancer.

References

1. Goodwin M (2017) Burden of cancer in Australia: Australian Burden of Disease Study 2011. Canberra: Australian Institute of Health and Welfare
2. Australian Institute of Health and Welfare (2018) Cancer in Aboriginal and Torres Strait Islander people of Australia. Retrieved 15 March 2018 from https://www.aihw.gov.au/reports/cancer/cancer-in-indigenous-australians/contents/table-of-contents
3. National Cancer Institute (2015) What is cancer? Retrieved 2017 from https://www.cancer.gov/about-cancer/understanding/what-is-cancer
4. Moon L, Connell E, Rompotis C, Martin F, Bartlett N, Harvey J (2017) Cancer in Australia 2017. Canberra: Australian Institute of Health and Welfare
5. Castles S, Wainer Z, Jayasekara H (2016) Risk factors for cancer in the Australian Aboriginal and Torres Strait Islander population: a systematic review. Australian Journal of Primary Health;22(3):190-197
6. Closing the Gap Clearinghouse (2012) Healthy lifestyle programs for physical activity and nutrition. (Closing the Gap Clearinghouse resource sheet no. 9) Canberra: Closing the Gap Clearinghouse
7. Dudgeon P, Wright M, Paradies Y, Garvey D, Walker I (2014) Aboriginal social, cultural and historical contexts. In: Dudgeon P, Milroy H, Walker R, eds. Working together: Aboriginal and Torres Strait Islander mental health and wellbeing principles and practice. 2nd ed. Canberra: Department of The Prime Minister and Cabinet:3-24
8. Saggers S, Gray D (1991) Aboriginal health and society: the traditional and contemporary Aboriginal struggle for better health. North Sydney: Allen and Unwin
9. Altman J (2003) The economic and social context of Indigenous health. In: Thomson N, ed. The health of Indigenous Australians. South Melbourne: Oxford University Press:25-43
10. Parker R, Milroy H (2014) Aboriginal and Torres Strait Islander mental health: an overview. In: Dudgeon P, Milroy H, Walker R, eds. Working together: Aboriginal and Torres Strait Islander mental health and wellbeing principles and practice. 2nd ed. Canberra: Department of The Prime Minister and Cabinet:25-38
11. Sherwood J (2013) Colonisation – it’s bad for your health: the context of Aboriginal health. Contemporary Nurse;46(1):28-40
12. Zubrick SR, Holland C, Kelly K, Calma T, Walker R (2014) The evolving policy context in mental health and wellbeing. In: Dudgeon P, Milroy H, Walker R, eds. Working together: Aboriginal and Torres Strait Islander mental health and wellbeing principles and practice. 2nd edition ed. Canberra: Department of The Prime Minister and Cabinet:69-90 (chapter 5)
13. Zubrick SR, Shepherd CCJ, Dudgeon P, Gee G, Paradies Y, Scrine C, Walker R (2014) Social determinants of social and emotional wellbeing. In: Dudgeon P, Milroy H, Walker R, eds. Working together: Aboriginal and Torres Strait Islander mental health and wellbeing principles and practice. 2nd edition ed. Canberra: Department of The Prime Minister and Cabinet:93-112 (chapter 6)
14. Kamien M (1980) The Aboriginal Australian experience. In: Stanley NF, Joske RA, eds. Changing disease patterns and human behaviour. London: Academic Press:254-270
15. Moodie PM (1981) Australian Aborigines. In: Trowell HC, Burkitt DP, eds. Western diseases: their emergence and prevention. London: Edward Arnold:154-167
16. Carson B, Dunbar T, Chenhall RD, Bailie R, eds. (2007) Social determinants of Indigenous health. Crows Nest, NSW: Allen and Unwin
17. Marmot M (2004) The status syndrome: how social standing affects our health and longevity. New York: Holt Paperbacks
18. Wilkinson R, Marmot M (2003) Social determinants of health: the solid facts. (2nd ed) Denmark: World Health Organization
19. DiGiacomo M, Davidson PM, McGrath SJ, Dharmendra T, Thompson SC (2012) Cancer in Aboriginal and Torres Strait Islander peoples: a rapid review. Sydney: The Sax Institute
20. Shahid S, Finn L, Bessarab D, Thompson SC (2009) Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services. BMC Health Services Research 9.
21. Prior D (2009) The meaning of cancer for Australian Aboriginal women; changing the focus of cancer nursing. European Journal of Oncology Nursing;13(4):280-286
22. Australian Bureau of Statistics (2014) Estimates and projections, Aboriginal and Torres Strait Islander Australians, 2001 to 2026. (ABS Catalogue no.3238.0) Canberra: Australian Bureau of Statistics
23. Australian Bureau of Statistics (2016) Australian demographic statistics, Jun 2016. Retrieved 15 December 2016 from http://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/3101.0Main+Features1Jun%202016?OpenDocument
24. Australian Bureau of Statistics (2013) Population projections, Australia, 2012 (base) to 2101. (ABS Catalogue no 3222.0) Canberra: Australian Bureau of Statistics
25. Australian Institute of Health and Welfare (2014) Cancer in Australia: an overview 2014. (AIHW Catalogue no CAN 88, cancer series no 90) Canberra: Australian Institute of Health and Welfare
26. Australian Institute of Health and Welfare, Cancer Australia (2013) Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. (AIHW Catalogue no CAN 75, cancer series no78) Canberra: Australian Institute of Health and Welfare
27. Cunningham J, Rumbold AR, Zhang X, Condon JR (2008) Incidence, aetiology, and outcomes of cancer in Indigenous peoples in Australia. The Lancet Oncology;9(6):585-595
28. Claydon C, Webber K, Sweeney J (2017) National Drug Strategy Household Survey 2016: detailed findings. Canberra: Australian Institute of Health and Welfare
29. Australian Institute of Health and Welfare (2017) Aboriginal and Torres Strait Islander Health Performance Framework. Retrieved 30 May 2017 from https://www.aihw.gov.au/reports/indigenous-health-welfare/health-performance-framework/contents/summary
30. Australian Bureau of Statistics (2013) Australian Aboriginal and Torres Strait Islander health survey: first results, Australia, 2012-13. (ABS Catalogue no. 4727.0.55.001) Canberra: Australian Bureau of Statistics
31. Australian Bureau of Statistics (2016) National Aboriginal and Torres Strait Islander Social Survey, 2014-15. Canberra: Australian Bureau of Statistics
32. Whiteman DC, Webb PM, Green AC, Neale RE, Fritschi L, Bain CJ, Parkin DM, Wilson LF, Olsen CM, Nagle CM, Pandeya N, Jordan SJ, Antonsson A, Kendall BJ, Hughes MCB, Ibiebele TI, Miura K, Peters S, Carey RN (2015) Cancers in Australia in 2010 attributable to modifiable factors: introduction and overview. Australian and New Zealand Journal of Public Health;39(5):403-407
33. Australian Bureau of Statistics (2015) Australian Aboriginal and Torres Strait Islander health survey: nutrition results – food and nutrients, 2012-13. (ABS cat. no. 4727.0.55.005) Canberra: Australian Bureau of Statistics
34. Condon J, Armstrong BK, Barnes A, Cunningham J (2003) Cancer in Indigenous Australians: a review. Cancer Causes & Control;14(2):109-121
35. Tolhurst P, Lindberg R, Calder R, Dunbar J, de Courten M (2016) Australia’s health tracker. Melbourne: Australian Health Policy Collaboration
36. Australian Bureau of Statistics (2014) Australian Aboriginal and Torres Strait Islander health survey: biomedical results, 2012-13. (ABS Catalogue no 4727.0.55.003) Canberra: Australian Bureau of Statistics
37. Australian Bureau of Statistics (2014) Australian Aboriginal and Torres Strait Islander health survey: updated results, 2012–13. (ABS Catalogue no. 4727.0.55.006) Canberra: Australian Bureau of Statistics
38. Australian Bureau of Statistics (2014) Australian Aboriginal and Torres Strait Islander health survey: updated results, 2012-13: table 8 [data cube]. Retrieved 6 June 2014 from http://www.abs.gov.au/AUSSTATS/subscriber.nsf/log?openagent&472705500608.xls&4727.0.55.006&Data%20Cubes&2414D8800A3A8364CA257CEE0010D832&0&2012%9613&06.06.2014&Latest
39. Harvey J, Budd A, Tanevska B, Ng F, Meere D (2018) Cervical screening in Australia 2018. Canberra: Australian Institute of Health and Welfare
40. MyHealthyCommunities (2018) HPV immunisation rates 2015-16: web update. Canberra: Australian Institute of Health and Welfare, MyHealthyCommunities
41. The Kirby Institute (2017) Bloodborne viral and sexually transmissible infections in Aboriginal and Torres Strait Islander people: annual surveillance report 2017. Sydney: The Kirby Institute
42. Cancer Australia (2017) Check your cancer risk. Retrieved 2017 from https://lifestylerisk.canceraustralia.gov.au/#/
43. Cancer Australia (2017) Familial Risk Assessment FRA-BOC. Retrieved 2017 from https://canceraustralia.gov.au/clinical-best-practice/gynaecological-cancers/familial-risk-assessment-fra-boc
44. Britt HC, Miller GC (2013) The Bettering the Evaluation and Care of Health (BEACH) program: where to from here? Medical Journal of Australia;198(3):125-126
45. Burgess K, Gilbert M, McIntyre J, Mole T (2018) Admitted patient care 2016-17: Australian hospital statistics. Canberra: Australian Institute of Health and Welfare
46. Steering Committee for the Review of Government Service Provision (2016) Overcoming Indigenous disadvantage: key indicators 2016 report. Canberra: Productivity Commission
47. Australian Bureau of Statistics (2017) Causes of death, Australia, 2016. Retrieved 27 September 2017 from http://www.abs.gov.au/AUSSTATS/abs@.nsf/allprimarymainfeatures/47E19CA15036B04BCA2577570014668B?opendocument
48. Australian Institute of Health and Welfare (2016) Australian Burden of Disease Study: impact and causes of illness and death in Aboriginal and Torres Strait Islander people 2011. (Australian Burden of Disease Study series no. 6, Cat no. BOD 7) Canberra: Australian Institute of Health and Welfare
49. Australian Institute of Health and Welfare (2015) Aboriginal and Torres Strait Islander health performance framework 2014 report: detailed analyses. (AIHW Cat. no. IHW 167) Canberra: Australian Institute of Health and Welfare
50. Moore SP, Green AC, Bray F, Garvey G, Coory M, Martin J, Valery PC (2014) Survival disparities in Australia: an analysis of patterns of care and comorbidities among Indigenous and non-Indigenous cancer patients. BMC Cancer 14.
51. Shahid S, Thompson SC (2009) An overview of cancer and beliefs about the disease in Indigenous people of Australia, Canada, New Zealand and the US. Australian and New Zealand Journal of Public Health;33(2):109 – 118
52. Martini A, Javanparast S, Ward PR, Baratiny G, Gill T, Cole S, Tsourtos G, Aylward P, Jiwa M, Misan G, Wilson C, Young GP (2011) Colorectal cancer screening in rural and remote areas: analysis of the National Bowel Cancer Screening Program data for South Australia. Rural and Remote Health 11.
53. Ward PR, Javanparast S, Ah Matt M, Martini A, Tsourtos G, Cole S, Gill T, Aylward P, Baratiny G, Jiwa M, Misan G, Wilson C, Young G (2011) Equity of colorectal cancer screening: cross-sectional analysis of National Bowel Cancer Screening Program data for South Australia. Australian and New Zealand Journal of Public Health;35(1):61–65
54. Australian Institute of Health and Welfare (2010) National best practice guidelines for collecting Indigenous status in health data sets. (AIHW Catalogue no IHW 29) Canberra: Australian Institute of Health and Welfare
55. Davidson PM, Jiwa M, DiGiacomo ML, McGrath SJ, Newton PJ, Durey AJ, Bessarab DC, Thompson SC (2013) The experience of lung cancer in Aboriginal and Torres Strait Islander peoples and what it means for policy, service planning and delivery. Australian Health Review;37(1):70-78
56. Cancer Australia (2015) National Aboriginal and Torres Strait Islander cancer framework. Sydney: Cancer Australia
57. Demaio A, Drysdale M, de Courten M (2012) Appropriate health promotion for Australian Aboriginal and Torres Strait Islander communities: crucial for closing the gap. Global Health Promotion;19(2):58-62
58. O’Donoghue L, Percival N, Laycock A, McCalman J, Tsey K, Armit C, Bailie R (2014) Evaluating Aboriginal and Torres Strait Islander health promotion activities using audit and feedback. Australian Journal of Primary Health;20(4):339-344
59. Cancer Council Australia (2017) What we do. Retrieved 2017 from http://www.cancer.org.au/about-us/what-we-do.html
60. Christou A, Thompson SC (2010) How could the National Bowel Cancer Screening Program for Aboriginal people in Western Australia be improved? (Report to the WA Bowel Cancer Screening Implementation Committee, Department of Health, Western Australia) Perth, WA: Western Australian Department of Health
61. Cancer Council Western Australia (2013) Making time for bowel cancer screening [online video]. Cancer Council Western Australia
62. Haigh M, Shahid S, O’Connor K, Thompson SC (2016) Talking about the not talked about: use of, and reactions to, a DVD promoting bowel cancer screening to Aboriginal people. Australian and New Zealand Journal of Public Health;40(6):548-552
63. Cancer Council Western Australia (2018) Aboriginal cancer education video. Perth: Cancer Council Western Australia
64. Christou A, Thompson SC (2013) Missed opportunities in educating Aboriginal Australians about bowel cancer screening: whose job is it anyway? Contemporary Nurse;46(1):59-69
65. McCalman J, Tsey K, Bainbridge R, Rowley K, Percival N, O’Donoghue L, Brands J, Whiteside M, Judd J (2014) The characteristics, implementation and effects of Aboriginal and Torres Strait Islander health promotion tools: a systematic literature search. BMC Public Health 14.
66. Upton P, Davey R, Evans M, Mikhailovich K, Simpson L, Hacklin D (2014) Tackling Indigenous Smoking and Healthy Lifestyle Programme review: a rapid review of the literature. Canberra: Australian Department of Health
67. Malseed C, Nelson A, Ware R (2014) Evaluation of a school-based health education program for urban Indigenous young people in Australia. Scientific Research;6(7):587 – 597
68. Australian Health Ministers’ Advisory Council (2017) Aboriginal and Torres Strait Islander Health Performance Framework 2017 report. Canberra: Department of the Prime Minster and Cabinet
69. Australian Health Ministers’ Advisory Council (2015) Aboriginal and Torres Strait Islander health performance framework 2014 report. Canberra: Department of the Prime Minister and Cabinet
70. Diabetes Australia (2013) Aboriginal and Torres Strait Islanders and diabetes action plan. Canberra: Diabetes Australia
71. Thompson SC, Shahid S, Bessarab D, Durey A, Davidson PM (2011) Not just bricks and mortar: planning hospital cancer services for Aboriginal people. BMC Research Notes 4.
72. Taylor EV, Haigh MM, Shahid S, Garvey G, Cunningham J, Thompson SC (2018) Cancer services and their initiatives to improve the care of Indigenous Australians. International Journal of Environmental Research and Public Health;15(4):1-16
73. Meiklejohn JA, Garvey G, Bailie R, Walpole E, Adams J, Williamson D, Martin J, Bernardes CM, Arley B, Marcusson B, Valery PC (2017) Follow-up cancer care: perspectives of Aboriginal and Torres Strait Islander cancer survivors. Supportive Care in Cancer;First online(http://dx.doi.org/10.1007/s00520-016-3563-x)
74. Meiklejohn JA, Adams J, Valery PC, Walpole ET, Martin JH, Williams HM, Garvey G (2016) Health professional’s perspectives of the barriers and enablers to cancer care for Indigenous Australians. European Journal of Cancer Care;25(2):254-261
75. Liaw ST, Lau P, Pyett P, Furler J, Burchill M, Rowley K, Kelaher M (2011) Successful chronic disease care for Aboriginal Australians requires cultural competence. Australian and New Zealand Journal of Public Health;35(3):238-248
76. Freeman T, Edwards T, Baum F, Lawless A, Jolley G, Javanparast S, Francis T (2014) Cultural respect strategies in Australian Aboriginal primary health care services: beyond education and training of practitioners. Australian and New Zealand Journal of Public Health;38(4):355-361
77. Shahid S, Durey A, Bessarab D, Aoun SM, Thompson SC (2013) Identifying barriers and improving communication between cancer service providers and Aboriginal patients and their families: the perspective of service providers. BMC Health Services Research 13.
78. Meiklejohn JA, Adams J, Valery PC, Walpole ET, Martin JH, Williams HM, Garvey G (2015) Indigenous cancer care in Queensland, Australia: health professionals’ framing of “difference”. Australian Journal of Cancer Nursing;16(1):4-6,8-10,12
79. Shahid S, Teng T-H, K. ,, Bessarab D, Aoun S, Baxi S, Thompson SC (2016) Factors contributing to delayed diagnosis of cancer among Aboriginal people in Australia: a qualitative study. BMJ Open 6.
80. Shahid S, Bleam R, Bessarab D, Thompson SC (2010) “If you don’t believe it, it won’t help you”: use of bush medicine in treating cancer among Aboriginal people in Western Australia. Journal of Ethnobiology and Ethnomedicine;6(18):1-22
81. Anderson S (2012) Increasing Aboriginal and Torres Strait Islander women’s access to BreastScreen [ppt]. Presented at Time to shine: APNA conference 2012 May 2012, Melbourne
82. Jones VR, Tremain D, Zubrzycki J, Murray B, Franke A (2011) Partnerships with Aboriginal people and cancer services: breaking barriers to close the gap in Aboriginal health outcomes. Asia Pacific Journal of Clinical Oncology;7(176)
83. Nancarrow H, Wilcoxon H, Giles C, Zorbas H (2011) Bridging gaps in breast cancer outcomes for Indigenous women – A model of engagement. Asia Pacific Journal of Clinical Oncology;7(84)
84. Shahid S, Finn LD, Thompson SC (2009) Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting. Medical Journal of Australia;190(10):574-579
85. Taylor KP, Thompson SC, Smith JS, Dimer L, Ali M, Wood MM (2009) Exploring the impact of an Aboriginal Health Worker on hospitalised Aboriginal experiences: lessons from cardiology. Australian Health Review;33(4):549-557
86. McGrath PD, Patton MAS, Ogilvie KF, Rayner RD, Mcgrath ZM, Holewa HF (2007) The case for Aboriginal health workers in palliative care. Australian Health Review;31(3):430-439
87. Health Workforce Australia (2014) Australia’s health workforce series: Aboriginal and Torres Strait Islander health workers / practitioners in focus. Canberra: Health Workforce Australia
88. Hayman N (2010) Strategies to improve Indigenous access for urban and regional populations to health services. Heart, Lung and Circulation;19(5-6):367-371
89. Bernardes CM, Whop LJ, Garvey G, Valery PC (2012) Health service utilization by Indigenous cancer patients in Queensland: a descriptive study. International Journal for Equity in Health 11.
90. Australian Government Department of Health (2015) Implementation plan for the National Aboriginal and Torres Strait Islander Health Plan 2013–2023. Canberra: Australian Government Department of Health
91. Steering Committee for the Review of Government Service Provision (2015) Report on government services 2015: Indigenous compendium. Canberra: Productivity Commission
92. Finn LD, Pepper A, Gregory P, Thompson SC (2008) Improving Indigenous access to cancer screening and treatment services: descriptive findings and a preliminary report on the Midwest Indigenous Women’s Cancer Support Group. Australasian Medical Journal;1(2):1-21
93. Cuesta-Briand B, Bessarab D, Shahid S, Thompson SC (2016) Connecting tracks: exploring the roles of an Aboriginal womens cancer support network. Health & Social Care in the Community;24(6):779-788
94. Cavanagh BM, Wakefield CE, McLoone JK, Garvey G, Cohn RJ (2015) Cancer survivorship services for indigenous peoples: where we stand, where to improve? A systematic review. Journal of Cancer Survivorship;First online(http://dx.doi.org/10.1007/s11764-015-0479-2)
95. Valery PC, Bernardes CM, Beesley V, Hawkes AL, Baade P, Garvey G (2016) Unmet supportive care needs of Australian Aboriginal and Torres Strait Islanders with cancer: a prospective, longitudinal study. Supportive Care in Cancer;25(3):869-877
96. Condon JR, Zhang X, Baade P, Griffiths K, Cunningham J, Roder DM, Coory M, Jelfs PL, Threlfall T (2014) Cancer survival for Aboriginal and Torres Strait Islander Australians: a national study of survival rates and excess mortality. Population Health Metrics;12(1):1-11
97. Valery PC, Coory M, Stirling J, Green AC (2006) Cancer diagnosis, treatment, and survival in Indigenous and non-Indigenous Australians: a matched cohort study. The Lancet;367(9525):1842-1848
98. Condon JR, Barnes T, Armstrong BK, Selva-Nayagam S, Elwood JM (2005) Stage at diagnosis and cancer survival for Indigenous Australians at the Northern Territory. Medical Journal of Australia;182(6):277-280
99. Coory MD, Green AC, Stirling J, Valery PC (2008) Survival of Indigenous and non-Indigenous Queenslanders after a diagnosis of lung cancer: a matched cohort study. Medical Journal of Australia;188(10):562-566
100. Mooi JK, Whop LJ, Valery PC, Sabesan SS (2012) Teleoncology for Indigenous patients: the responses of patients and health workers. Australian Journal of Rural Health;20(5):265-269
101. Jiwa M, Saunders CM, Thompson SC, Rosenwax LK, Sargent S, Khong EL, Halkett GKB, Sutherland G, Ee HC, Packer TL, Merriman G, Arnet HR (2008) Timely cancer diagnosis and management as a chronic condition: opportunities for primary care. Medical Journal of Australia;189(2):78-82
102. Underhill C, Bartel R, Goldstein D, Snodgrass H, Begbie S, Yates P, White K, Jong K, Grogan P (2009) Mapping oncology services in regional and rural Australia. Australian Journal of Rural Health;17(6):321-329
103. Bywood P, Katterl R, Lunnay B (2011) Disparities in primary health care utilisation: Who are the disadvantaged groups? How are they disadvantaged? What interventions work? Adelaide: Primary Health Care Research & Information Service
104. Baade PD, Turrell G, Aitken JF (2011) Geographic remoteness, area-level socio-economic disadvantage and advanced breast cancer: a cross-sectional, multilevel study. Journal of Epidemiology and Community Health;65(11):1037-1043
105. Roder D, Zorbas H, Kollias J, Pyke C, Walters D, Campbell I, Taylor C, Webster F (2013) Risk factors for poorer breast cancer outcomes in residents of remote areas of Australia. Asian Pacific Journal of Cancer Prevention;14(1):547-552
106. Gruen R, Weeramanthri T, Bailie RS (2002) Outreach and improved access to specialist services for Indigenous people in remote Australia: the requirements for sustainability. Journal of Epidemiology and Community Health;56:517-521
107. Shahid S, Finn L, Bessarab D, Thompson SC (2011) ‘Nowhere to room … nobody told them’: logistical and cultural impediments to Aboriginal peoples’ participation in cancer treatment. Australian Health Review;35(2):235-241
108. McGrath P, Rawson N (2013) Key factors impacting on diagnosis and treatment for vulvar cancer for Indigenous women: findings from Australia. Supportive Care in Cancer;21(10):2769-2775
109. McMichael C, Kirk M, Manderson L, Hoban E, Potts H (2000) Indigenous women’s perceptions of breast cancer diagnosis and treatment in Queensland. Australian and New Zealand Journal of Public Health;24(5):515-519
110. Tranberg R, Alexander S, Hatcher D, Mackey S, Shahid S, Holden L, Kwok C (2015) Factors influencing cancer treatment decision-making by indigenous peoples: a systematic review. Psycho-Oncology;Early View(http://dx.doi.org/10.1002/pon.3900)
111. Australian Institute of Health and Welfare (2015) The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples 2015. (AIHW Catalogue no IHW 147) Canberra: Australian Institute of Health and Welfare
112. Cancer Australia (2012) Study of breast cancer screening characteristics and breast cancer survival in Aboriginal and Torres Strait Islander women of Australia. Surry Hills, NSW: Cancer Australia
113. Silburn K, Moore S, Morris B, Kehoe B, Garvey G (2014) National Indigenous Cancer Network (NICaN) Breast Cancer Research Roundtable. Retrieved from www.menzies.edu.au/…/206357_NICaN_Breast_Cancer_Research_Roundtable
114. Treloar C, Gray R, Brener L, Jackson C, Saunders V, Johnson P, Harris M, Butow P, Newma C (2013) Health literacy in relation to cancer: addressing the silence about and absence of cancer discussion among Aboriginal people, communities and health services. Health & Social Care in the Community;21(6):655–664
115. Christou A, Katzenellenbogen J, Thompson SC (2010) Australia’s National Bowel Cancer Screening Program: does it work for Indigenous Australians? BMC Public Health 10.
116. Christou A, Thompson SC (2012) Colorectal cancer screening knowledge, attitudes and behavioural intention among Indigenous Western Australians. BMC Public Health 12.
117. Tanevska B, Budd A, Rompotis C, Harvey J (2017) BreastScreen Australia monitoring report 2014-2015. Canberra: Australian Institute of Health and Welfare
118. Dasgupta P, Baade PD, Youlden DR, Garvey G, Aitken JF, Wallington I, Chynoweth J, Zorbas H, Roder D, Youl PH (2017) Variations in outcomes for Indigenous women with breast cancer in Australia: a systematic review. European Journal of Cancer Care;26(6):e12662
119. Meere D, Harvey J (2018) National Bowel Cancer Screening Program: monitoring report 2018. Canberra: Australian Institute of Health and Welfare
120. Wright K, Miller D, Howle T, Seebus I (2017) National Key Performance Indicators for Aboriginal and Torres Strait Islander primary health care: results from June 2016. National key performance indicators for Aboriginal and Torres Strait Islander primary health care series no. 4. Canberra: Australian Institute of Health and Welfare
121. Whop LJ, Garvey G, Baade P, Cunningham J, Lokuge K, Brotherton JML, Valery PC, O’Connell DL, Canfell K, Diaz A, Roder D, Gertig D, Moore SP, Condon JR (2016) The first comprehensive report on Indigenous Australian women’s inequalities in cervical screening: a retrospective registry cohort study in Queensland, Australia (2000-2011). Cancer;Early view(http://dx.doi.org/10.1002/cncr.29954)
122. Coory MD, Fagan PS, Muller JM, Dunn NAM (2002) Participation in cervical cancer screening by women in rural and remote Aboriginal and Torres Strait Islander communities in Queensland. Medical Journal of Australia;177(10):544-547
123. Pilkington L, Haigh MM, Durey A, Katzenellenbogen JM, Thompson SC (2017) Perspectives of Aboriginal women on participation in mammographic screening: a step towards improving services. BMC Public Health 17.
124. National Bowel Cancer Screening Program (2017) Bowel screening: no shame – just part of life. Retrieved 27 October 2017 from https://www.indigenousbowelscreen.com.au/resource/new-online-module/
125. Cancer Australia (2017) For Aboriginal and Torres Strait Islander people. Retrieved 2017 from https://canceraustralia.gov.au/affected-cancer/atsi
126. Cancer Australia (2016) My Lung Cancer Pathway: a guide for Aboriginal and Torres Strait Islander people and their families. Sydney: Cancer Australia
127. Shahid S, Beckmann KR, Thompson SC (2008) Supporting cancer control for Indigenous Australians: initiatives and challenges for cancer councils. Australian Health Review;32(1):56-65
128. Thompson SC, Shahid S, DiGiacomo M, Pilkington L, Davidson PM (2014) Making progress: the role of cancer councils in Australia in Indigenous cancer control. BMC Public Health 14.
129. Breast Cancer Network Australia (2017) Breast Cancer Network Australia: who we are. Retrieved 2017
130. McGrath Foundation (2017) Who we are. Retrieved 2017 from https://www.mcgrathfoundation.com.au/Default.aspx?close=y
131. Leukaemia Foundation (2017) About us. Retrieved 2017 from http://www.leukaemia.org.au/about-us/about-us
132. Ley S (2015) Australian-first national approach to Indigenous cancer care. Retrieved 31 August 2015 from http://www.health.gov.au/internet/ministers/publishing.nsf/Content/health-mediarel-yr2015-ley106.htm
133. Anderiesz C, Elwood M, Hill DJ (2006) Cancer control policy in Australia. Australia and New Zealand Health Policy 3.
134. MacLennan R (1987) A national cancer prevention policy for Australia. Canberra: Australian Cancer Society
135. Cancer Council Australia (2017) National cancer control policy. Retrieved 2017 from http://wiki.cancer.org.au/policy/National_Cancer_Control_Policy
136. Health Targets Implementation (Health for All) Committee (1988) Health for all Australians. Canberra: Australian Government Publishing Service
137. Australian Institute of Health and Welfare, Commonwealth Department of Health and Family Services (1997) First report on national health priority areas 1996: cardiovascular health, cancer control, injury prevention and control, mental health, diabetes mellitus. Canberra: Australian Institute of Health and Welfare, Commonwealth Department of Health and Family Services,
138. Australian Institute of Health and Welfare, Commonwealth Department of Health and Family Services (1998) National health priority areas report: cancer control. Canberra: Australian Institute of Health and Welfare
139. Clinical Oncological Society Australia, Cancer Council Australia, National Cancer Control Initiative (2003) Optimising cancer care in Australia. Melbourne: National Cancer Control Initiative
140. Cancer Australia (2008) A national cancer data strategy for Australia. Canberra: Cancer Australia
141. Cancer Australia (2011) Cancer Australia strategic plan 2011-2014. Sydney: Cancer Australia
142. Cancer Australia (2014) Cancer Australia strategic plan 2014-2019. Sydney: Cancer Australia
143. Australian Department of Health and Ageing (2013) National Aboriginal and Torres Strait Islander Health Plan 2013-2023. Canberra: Australian Department of Health and Ageing
144. Cancer Australia (2016) National framework for gynaecological cancer control. Sydney: Cancer Australia
145. Cancer Australia (2018) Lung cancer framework: principles for best practice lung cancer care in Australia. Sydney: Cancer Australia
146. Zorbas H, Elston J (2016) Sharing the challenge of cancer control for Indigenous Australians: a national agenda. European Journal of Cancer Care;25(2):222-224
147. Cancer Australia (2016) Identifying critical success factors for mammographic screening participation for Aboriginal and Torres Strait Islander women. Retrieved 2016 from http://cdn-au.mailsnd.com/89085/6kSLuTE9hxy3bMUEe4dFUfA471L917o7i4wGL7A5SSM/1636944.pdf
148. Cancer Australia (2017) A shared agenda: Leadership Group established to help close ‘the cancer gap’. Retrieved 2017 from https://canceraustralia.gov.au/about-us/news/shared-agenda-leadership-group-established-help-close-cancer-gap
149. Yerrell PH, Roder D, Cargo M, Reilly R, Banham D, Micklem JM, Morey K, Stewart HB, Stajic J, Norris M, Brown A (2016) Cancer Data and Aboriginal Disparities (CanDAD) – developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol. BMJ Open 6.
150. Garvey G, Cunningham J, Valery PC, Condon J, Roder D, Bailie R, Martin J, Olver I (2011) Reducing the burden of cancer for Aboriginal and Torres Strait Islander Australians: time for a coordinated, collaborative, priority-driven, Indigenous-led research program. Medical Journal of Australia;194(10):530-531
151. Miller J, Knott V, Wilson C, Cunningham J, Condon J, Roder D., Bowden J, Chong A, Doherty T, Griffiths K, McNamara C, Miller C (2010) Aboriginal and Torres Strait Islander cancer control research project. Canberra: Cancer Australia
152. Durey A, Thompson SC (2012) Reducing the health disparities of Indigenous Australians: time to change focus. BMC Health Services Research 12.
153. Australian Primary Health Care Research Institute (2015) A ‘Wellbeing Framework’ for Aboriginal and Torres Strait Islander peoples living with chronic disease. Sydney: Kanyini Vascular Collaboration
154. O’Brien M, Stewart M (2015) A ‘Wellbeing Framework’ for Aboriginal and Torres Strait Islander peoples living with chronic disease. Presented at 13th National Rural Health Conference 24-27 May 2015, Darwin
155. Hall SE, Bulsara CE, Bulsara MK, Leahy TG, Culbong MR, Hendrie D, Holman CDJ (2004) Treatment patterns for cancer in Western Australia: does being Indigenous make a difference? Medical Journal of Australia;181(4):191-194
156. Cancer Australia (2018) Optimal care pathway for Aboriginal and Torres Strait Islander people with cancer. Sydney: Australian Government

[1] Neoplasms C00-D48 also includes benign neoplasms D10-D36 ICD-10-AM.

[2] Average length of stay does not include day admissions only overnight hospitalisations [26]

[3] For the purposes of potentially avoidable deaths ICD-10 for cancer includes skin, breast (females), cervix, prostate (males), kidney, thyroid, Hodgkin’s disease and acute lymphoid leukaemia/acute lymphoblastic leukaemia.

[4] Ischaemic heart disease contributed the largest proportion to the avoidable mortality gap (22%) and diabetes the second largest (17%) [49].