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1.  Mortality in an Aboriginal Medical Service (Redfern) cohort 
Background
Published estimates of Aboriginal mortality and life expectancy (LE) for the eastern Australian states are derived from demographic modelling techniques to estimate the population and extent of under-recording of Aboriginality in death registration. No reliable empirical information on Aboriginal mortality and LE exists for New South Wales (NSW), the most populous Australian state in which 29% of Aboriginal people reside.
This paper estimates mortality and LE in a large, mainly metropolitan cohort of Aboriginal clients from the Aboriginal Medical Service (AMS) Redfern, Sydney, NSW.
Methods
Identifying information from patient records accrued by the AMS Redfern since 1980 of definitely Aboriginal clients, without distinction between Aboriginal and Torres Strait Islander (n=24,035), was extracted and linked to the National Death Index (NDI) at the Australian Institute of Health and Welfare (AIHW). Age-specific mortality rates and LEs for each sex were estimated using the AMS patient population as the denominator, discounted for deaths. Directly age-standardised mortality and LEs were estimated for 1995–1999, 2000–2004 and 2005–2009, along with 95% confidence intervals. Comparisons were made with other estimates of Aboriginal mortality and LE and with the total Australian population.
Results
Mortality declined in the AMS Redfern cohort over 1995–2009, and the decline occurred mostly in the ≤44 year age range. Male LE at birth was estimated to be 64.4 years (95%CI:62.6-66.1) in 1995–1999, 65.6 years (95%CI:64.1-67.1) in 2000–2004, and 67.6 years (95%CI:65.9-69.2) for 2005–2009. In females, these LE estimates were 69.6 (95%CI:68.0-71.2), 71.1 (95%CI:69.9-72.4), and 71.4 (95%CI:70.0-72.8) years. LE in the AMS cohort was 11 years lower for males and 12 years lower for females than corresponding all-Australia LEs for the same periods. These were similar to estimates for Australian Aboriginal people overall for the same period by the Aboriginal Burden of Disease for 2009, using the General Growth Balance (GGB) model approach, and by the Australian Bureau of Statistics (ABS) for 2005–2007. LE in the AMS cohort was somewhat lower than these estimates for NSW Aboriginal people, and higher than ABS 2005–2007 estimates for Aboriginal people from Northern Territory, South Australia, and Western Australia.
Conclusions
The AMS Redfern cohort has provided the first empirically based estimates of mortality and LE trends in a large sample of Aboriginal people from NSW.
doi:10.1186/1478-7954-11-2
PMCID: PMC3602118  PMID: 23391275
2.  Recent developments in national Aboriginal and Torres Strait Islander health strategy 
In this paper I will describe some of the sentinel events in Aboriginal and Torres Strait Islander health policy and strategy during 2003 and the early part of 2004. This will involve discussion on the:
• National Strategic Framework in Aboriginal and Torres Strait Islander Health
• National Strategic Framework for Aboriginal and Torres Strait Islander Peoples Mental Health and Social and Emotional Well Being 2004–2009
• National Aboriginal and Torres Strait Islander Health Performance Framework
• The roll-out of the Primary Health Care Access Program
• The National Aboriginal and Torres Strait Islander Social Survey and the National Indigenous Health Survey
These developments are consistent with a policy agenda that has evolved, in general terms, since the release of the National Aboriginal Health Strategy in 1989. However, I will also consider significant developments in the broader context for Aboriginal and Torres Strait Islander affairs, particularly the decision made in early 2004 by the Howard government to abolish the Aboriginal and Torres Strait Islander Commission (ATSIC). While the key events and developments that are reported in this paper elaborate on an agenda that has been developing for more than a decade, the decision to abolish ATSIC is likely to have a revolutionary impact on the future development of Aboriginal health strategy.
doi:10.1186/1743-8462-1-3
PMCID: PMC544962  PMID: 15679932
3.  Comparison of the uptake of health assessment items for Aboriginal and Torres Strait Islander people and other Australians: Implications for policy 
Background
Health Assessment (HA) items were introduced in 1999 for Aboriginal and Torres Strait Islander people aged at least 55 years and all Australians aged over 75 years. In 2004 a new item was introduced for HAs among adult Aboriginal and Torres Strait Islander people aged 15–54 years. The new item has been applauded as a major policy innovation however this enthusiasm has been tempered with concern about potential barriers to its uptake. In this study we aim to determine whether there are disparities in uptake of HA items for Aboriginal and Torres Strait Islander people compared to other Australians.
Method
The analysis was based on Health Insurance Commission data. Indigenous status was ascertained based on the item number used. Logistic regression was used to compare uptake of HA items for older people among Aboriginal and Torres Strait Islander people compared to other Australians. Adjustments were made for dual eligibility. Uptake of the HA items for older people was compared to the uptake of the new item for Aboriginal and Torres Strait Islander people aged 15–44 years.
Results
Our analyses suggest a significant and persistent disparity in the uptake of items for older patients among Aboriginal and Torres Strait Islander people compared to other Australians. A similar disparity appears to exist in the uptake of the new adult Aboriginal and Torres Strait Islander HA item.
Conclusion
Further engagement of primary care providers and the community around the uptake of the new HA items may be required to ensure that the anticipated health benefits eventuate.
doi:10.1186/1743-8462-2-21
PMCID: PMC1239906  PMID: 16150154
4.  Measuring emotional and social wellbeing in Aboriginal and Torres Strait Islander populations: an analysis of a Negative Life Events Scale 
Aboriginal and Torres Strait Islander Australians experience widespread socioeconomic disadvantage and health inequality. In an attempt to make Indigenous health research more culturally-appropriate, Aboriginal and Torres Strait Islander Australians have called for more attention to the concept of emotional and social wellbeing (ESWB). Although it has been widely recognised that ESWB is of crucial importance to the health of Aboriginal and Torres Strait Islander peoples, there is little consensus on how to measure in Indigenous populations, hampering efforts to better understand and improve the psychosocial determinants of health. This paper explores the policy and political context to this situation, and suggests ways to move forward. The second part of the paper explores how scales can be evaluated in a health research setting, including assessments of endorsement, discrimination, internal and external reliability.
We then evaluate the use of a measure of stressful life events, the Negative Life Events Scale (NLES), in two samples of Aboriginal people living in remote communities in the Northern Territory of Australia. We argue that the Negative Life Events Scale is a promising assessment of psychosocial wellbeing in Aboriginal and Torres Strait Islander populations. Evaluation of the scale and its performance in other samples of Aboriginal and Torres Strait Islander populations is imperative if we hope to develop better, rather than more, scales for measuring ESWB among Indigenous Australians. Only then will it be possible to establish standardized methods of measuring ESWB and develop a body of comparable literature that can guide both a better understanding of ESWB, and evaluation of interventions designed to improve the psychosocial health of Indigenous populations and decrease health inequalities.
doi:10.1186/1475-9276-6-18
PMCID: PMC2203968  PMID: 18001479
5.  Adjusting for under-identification of Aboriginal and/or Torres Strait Islander births in time series produced from birth records: Using record linkage of survey data and administrative data sources 
Background
Statistical time series derived from administrative data sets form key indicators in measuring progress in addressing disadvantage in Aboriginal and Torres Strait Islander populations in Australia. However, inconsistencies in the reporting of Indigenous status can cause difficulties in producing reliable indicators. External data sources, such as survey data, provide a means of assessing the consistency of administrative data and may be used to adjust statistics based on administrative data sources.
Methods
We used record linkage between a large-scale survey (the Western Australian Aboriginal Child Health Survey), and two administrative data sources (the Western Australia (WA) Register of Births and the WA Midwives’ Notification System) to compare the degree of consistency in determining Indigenous status of children between the two sources. We then used a logistic regression model predicting probability of consistency between the two sources to estimate the probability of each record on the two administrative data sources being identified as being of Aboriginal and/or Torres Strait Islander origin in a survey. By summing these probabilities we produced model-adjusted time series of neonatal outcomes for Aboriginal and/or Torres Strait Islander births.
Results
Compared to survey data, information based only on the two administrative data sources identified substantially fewer Aboriginal and/or Torres Strait Islander births. However, these births were not randomly distributed. Births of children identified as being of Aboriginal and/or Torres Strait Islander origin in the survey only were more likely to be living in urban areas, in less disadvantaged areas, and to have only one parent who identifies as being of Aboriginal and/or Torres Strait Islander origin, particularly the father. They were also more likely to have better health and wellbeing outcomes. Applying an adjustment model based on the linked survey data increased the estimated number of Aboriginal and/or Torres Strait Islander births in WA by around 25%, however this increase was accompanied by lower overall proportions of low birth weight and low gestational age babies.
Conclusions
Record linkage of survey data to administrative data sets is useful to validate the quality of recording of demographic information in administrative data sources, and such information can be used to adjust for differential identification in administrative data.
doi:10.1186/1471-2288-12-90
PMCID: PMC3493324  PMID: 22747850
6.  Invasive pneumococcal disease in New South Wales, Australia: reporting Aboriginal and Torres Strait Islander status improves epidemiology 
The aim of this work was to determine the feasibility of improving Aboriginal and Torres Strait Islander status recording for notifiable diseases using all Invasive Pneumococcal Disease (IPD) notifications in a regional area of New South Wales, Australia.
In Australia people with IPD are nearly always admitted to hospital and their Aboriginal and Torres Strait Islander status is recorded. Aboriginal and Torres Strait Islander status was determined for IPD notifications by referring to the routine hospital admission data in a regional area of New South Wales, Australia.
There were 234 notifications in the regional area of Hunter New England during the period 2007–2009. Initially, 168 (72%) notifications had Aboriginal and Torres Strait Islander status recorded. After referring to the routine hospital admission data, the recorded status increased to 232 (99%). Updating the surveillance data required less than five minutes per notification.
Referring to routine hospital admission data proved a useful and time-efficient surveillance strategy to increase the proportion of notifications with Aboriginal and Torres Strait Islander status. These data can then be used to better understand the current epidemiology of IPD. Aboriginal and Torres Strait Islander children aged 0–4 years have a two- to threefold higher rate of invasive pneumococcal disease than non-Aboriginal children, thus high levels of timely pneumococcal immunization coverage remain important for young Aboriginal and Torres Strait Islander children.
doi:10.5365/WPSAR.2011.2.1.007
PMCID: PMC3729061  PMID: 23908887
7.  Providing culturally appropriate mental health first aid to an Aboriginal or Torres Strait Islander adolescent: development of expert consensus guidelines 
Background
It is estimated that the prevalence of mental illness is higher in Aboriginal and Torres Strait Islander adolescents compared to non-Aboriginal adolescents. Despite this, only a small proportion of Aboriginal youth have contact with mental health services, possibly due to factors such as remoteness, language barriers, affordability and cultural sensitivity issues. This research aimed to develop culturally appropriate guidelines for anyone who is providing first aid to an Australian Aboriginal or Torres Strait Islander adolescent who is experiencing a mental health crisis or developing a mental illness.
Methods
A panel of Australian Aboriginal people who are experts in Aboriginal youth mental health, participated in a Delphi study investigating how members of the public can be culturally appropriate when helping an Aboriginal or Torres Strait Islander adolescent with mental health problems. The panel varied in size across the three sequential rounds, from 37–41 participants. Panellists were presented with statements about cultural considerations and communication strategies via online questionnaires and were encouraged to suggest additional content. All statements endorsed as either Essential or Important by ≥ 90% of panel members were written into a guideline document. To assess the panel members’ satisfaction with the research method, participants were invited to provide their feedback after the final survey.
Results
From a total of 304 statements shown to the panel of experts, 194 statements were endorsed. The methodology was found to be useful and appropriate by the panellists.
Conclusion
Aboriginal and Torres Strait Islander Youth mental health experts were able to reach consensus about what the appropriate communication strategies for providing mental health first aid to an Aboriginal and Torres Strait Islander adolescent. These outcomes will help ensure that the community provides the best possible support to Aboriginal adolescents who are developing mental illnesses or are in a mental health crisis.
doi:10.1186/1752-4458-8-6
PMCID: PMC3922159  PMID: 24467923
Aboriginal; Torres Strait Islander; Adolescent; Youth; Mental illness; Mental health; Communication; Delphi method; Expert consensus; Community guidelines
8.  High risk alcohol-related trauma among the Aboriginal and Torres Strait Islanders in the Northern Territory 
High risk drinking is linked with high rates of physical harm. The reported incidence of alcohol - related trauma among Aboriginal and Torres Strait Islander people in the Northern Territory is the highest in the world. Facial fractures are common among young Aboriginal and Torres Strait Islanders. They are often linked with misuse of alcohol in the Northern Territory and are frequently secondary to assault. This review focuses on alcohol-related trauma in the Territory and draws attention to an urgent need for preventative health approach to address this critical issue.
doi:10.1186/1747-597X-7-33
PMCID: PMC3598681  PMID: 22862897
Facial trauma; Indigenous Australians or Aborginal and Torres Strait Islanders; Alcohol related injury; Culturally appropriate intervention
9.  The protocol for the Be Our Ally Beat Smoking (BOABS) study, a randomised controlled trial of an intensive smoking cessation intervention in a remote Aboriginal Australian health care setting 
BMC Public Health  2012;12:232.
Background
Australian Aboriginal peoples and Torres Strait Islanders (Indigenous Australians) smoke at much higher rates than non-Indigenous people and smoking is an important contributor to increased disease, hospital admissions and deaths in Indigenous Australian populations. Smoking cessation programs in Australia have not had the same impact on Indigenous smokers as on non-Indigenous smokers. This paper describes the protocol for a study that aims to test the efficacy of a locally-tailored, intensive, multidimensional smoking cessation program.
Methods/Design
This study is a parallel, randomised, controlled trial. Participants are Aboriginal and Torres Strait Islander smokers aged 16 years and over, who are randomly allocated to a 'control' or 'intervention' group in a 2:1 ratio. Those assigned to the 'intervention' group receive smoking cessation counselling at face-to-face visits, weekly for the first four weeks, monthly to six months and two monthly to 12 months. They are also encouraged to attend a monthly smoking cessation support group. The 'control' group receive 'usual care' (i.e. they do not receive the smoking cessation program). Aboriginal researchers deliver the intervention, the goal of which is to help Aboriginal peoples and Torres Strait Islanders quit smoking. Data collection occurs at baseline (when they enrol) and at six and 12 months after enrolling. The primary outcome is self-reported smoking cessation with urinary cotinine confirmation at 12 months.
Discussion
Stopping smoking has been described as the single most important individual change Aboriginal and Torres Strait Islander smokers could make to improve their health. Smoking cessation programs are a major priority in Aboriginal and Torres Strait Islander health and evidence for effective approaches is essential for policy development and resourcing. A range of strategies have been used to encourage Aboriginal peoples and Torres Strait Islanders to quit smoking however there have been few good quality studies that show what approaches work best. More evidence of strategies that could work more widely in Indigenous primary health care settings is needed if effective policy is to be developed and implemented. Our project will make an important contribution in this area.
Trial Registration
Australian New Zealand Clinical Trials Registry (ACTRN12608000604303)
doi:10.1186/1471-2458-12-232
PMCID: PMC3349500  PMID: 22439653
Indigenous; Aboriginal; Torres Strait Islander; Randomised controlled trial; Smoking cessation; Study protocol; Be Our Ally Beat Smoking (BOABS) Study
10.  “Makes you proud to be black eh?”: Reflections on meaningful Indigenous research participation 
Introduction
This article outlines the meaningful participation of eight Aboriginal and Torres Strait Islander community members employed as community researchers investigating the impact of pandemic influenza in rural and remote Indigenous communities in Australia. Aboriginal and Torres Strait Islander participation is now a requirement of health research involving Aboriginal and Torres Strait Islander communities. There is a growing literature on the different approaches to such involvement. Fundamental to this literature is an acknowledgement that Indigenous communities are no longer prepared to be research objects for external, mostly non-Indigenous researchers, and demand a role in decisions about what is researched and how it will be researched. In this paper, we describe the protracted process for site identification and recruitment and training of community researchers. We focus on the backgrounds of the Indigenous researchers and their motivations for involvement, and the strengths and challenges posed by Indigenous people researching in their own communities. Throughout the paper our concern is to document how genuine participation and the building of research capacity can occur.
Discussion
A key feature of the research was the employment, training and strengthening the capacity of local Aboriginal and Torres Strait Islander community members in the role of community researchers. A series of training workshops were conducted in northern Australia and focussed on qualitative research methods, including data collection, data analysis and writing. The Indigenous researchers collected the community-based data, and worked in partnership with experienced academic researchers in the analysis and compilation of community reports. Parts of those community reports, as well as additional information supplied by the community researchers, forms the basis of this article. As the demand increases for involvement of Indigenous community members as researchers, focus needs to be paid to what constitutes meaningful participation. If active participation in all aspects of the research process is intended, this necessitates close attention to the knowledge and skills required for this to occur at every stage. Building research capacity means not simply equipping local people to undertake research on a particular project, but to have the knowledge and skills to undertake research in other areas.
Conclusions
There are considerable benefits for Indigenous people researching in their own communities. Most important for the community researchers on this project was the sense that they were doing important health work, not just conducting research. Given the persistent gaps between Indigenous and non-Indigenous health, this is perhaps one of the most important contributions of this type of research. Whilst research outcomes are undoubtedly important, in many cases the process used is of greater importance.
doi:10.1186/1475-9276-11-40
PMCID: PMC3439313  PMID: 22873769
Indigenous; Participatory action research; Aboriginal; Torres Strait Islander; Participation
11.  Study Protocol – Diabetes and related conditions in urban Indigenous people in the Darwin, Australia region: aims, methods and participation in the DRUID Study 
BMC Public Health  2006;6:8.
Background
Diabetes mellitus is a serious and increasing health problem in Australia and is a designated national health priority. Diabetes and related conditions represent an even greater health burden among Indigenous Australians (Aborigines and Torres Strait Islanders), but there are critical gaps in knowledge relating to the incidence and prevalence, aetiology, and prevention of diabetes in this group, including a lack of information on the burden of disease among Indigenous people in urban areas. The DRUID Study (Diabetes and Related conditions in Urban Indigenous people in the Darwin region) was designed to address this knowledge gap.
Methods/design
The study was conducted in a specified geographic area in and around Darwin, Australia. Eligible participants underwent a health examination, including collection of blood and urine samples, clinical and anthropometric measurements, and administration of questionnaires, with an additional assessment for people with diabetes. The study was designed to incorporate local Indigenous leadership, facilitate community engagement, and provide employment and training opportunities for local Indigenous people. A variety of recruitment methods were used. A total of 1,004 eligible people gave consent and provided at least one measurement. When compared with census data for the Indigenous population living in the study area, there was a marked under-representation of males, but no substantial differences in age, place of residence, Indigenous group, or household income. Early participants were more likely than later participants to have previously diagnosed diabetes.
Discussion
Despite lower than anticipated recruitment, this is, to our knowledge, the largest study ever conducted on the health of Indigenous Australians living in urban areas, a group which comprises the majority of Australia's Indigenous population but about whose health and wellbeing relatively little is known. The study is well-placed to provide new information that can be used by policy makers and service providers to improve the delivery of services and programs that affect the health of Indigenous people. It also represents a valuable opportunity to establish an urban Indigenous cohort study, provided participants can be followed successfully over time.
doi:10.1186/1471-2458-6-8
PMCID: PMC1373687  PMID: 16417641
12.  Chronic hepatitis B prevalence among Aboriginal and Torres Strait Islander Australians since universal vaccination: a systematic review and meta-analysis 
BMC Infectious Diseases  2013;13:403.
Background
In Australia, higher rates of chronic hepatitis B (HBsAg) have been reported among Aboriginal and Torres Strait Islander (Indigenous) compared with non-Indigenous people. In 2000, the Australian government implemented a universal infant/adolescent hepatitis B vaccination program. We undertook a systematic review and meta-analysis to assess the disparity of HBsAg prevalence between Indigenous and non-Indigenous people, particularly since 2000.
Methods
We searched Medline, Embase and public health bulletins up to March 2011. We used meta-analysis methods to estimate HBsAg prevalence by Indigenous status and time period (before and since 2000).
Results
There were 15 HBsAg prevalence estimates (from 12 studies) among Indigenous and non-Indigenous people; adults and pregnant women (n = 9), adolescents (n = 3), prisoners (n = 2), and infants (n = 1). Of these, only one subgroup (adults/pregnant women) involved studies before and since 2000 and formed the basis of the meta-analysis. Before 2000, the pooled HBsAg prevalence estimate was 6.47% (95% CI: 4.56-8.39); 16.72% (95%CI: 7.38-26.06) among Indigenous and 0.36% (95%CI:-0.14-0.86) in non-Indigenous adults/pregnant women. Since 2000, the pooled HBsAg prevalence was 2.25% (95% CI: 1.26-3.23); 3.96% (95%CI: 3.15-4.77) among Indigenous and 0.90% (95% CI: 0.53-1.28) in non-Indigenous adults/pregnant women.
Conclusions
The disparity of HBsAg prevalence between Indigenous and non-Indigenous people has decreased over time; particularly since the HBV vaccination program in 2000. However HBsAg prevalence remains four times higher among Indigenous compared with non-Indigenous people. The findings highlight the need for opportunistic HBV screening of Indigenous people to identify people who would benefit from vaccination or treatment.
doi:10.1186/1471-2334-13-403
PMCID: PMC3846608  PMID: 24004727
Indigenous; HBV; Sexually transmissible infection; STI; Hepatitis
13.  The Be Our Ally Beat Smoking (BOABS) study, a randomised controlled trial of an intensive smoking cessation intervention in a remote aboriginal Australian health care setting 
BMC Public Health  2014;14:32.
Background
Australian Aboriginal and Torres Strait Islander peoples (Indigenous Australians) smoke at much higher rates than non-Indigenous people and smoking is an important contributor to increased disease, hospital admissions and deaths in Indigenous Australian populations. Smoking cessation programs in Australia have not had the same impact on Indigenous smokers as on non-Indigenous smokers. This paper describes the outcome of a study that aimed to test the efficacy of a locally-tailored, intensive, multidimensional smoking cessation program.
Methods
A randomised controlled trial of Aboriginal researcher delivered tailored smoking cessation counselling during face-to-face visits, aiming for weekly for the first four weeks, monthly to six months and two monthly to 12 months. The control (“usual care”) group received routine care relating to smoking cessation at their local primary health care service. Data collection occurred at enrolment, six and 12 months. The primary outcome was self-reported smoking cessation with urinary cotinine confirmation at final follow-up (median 13 (interquartile range 12–15) months after enrolment).
Results
Participants in the intervention (n = 55) and usual care (n = 108) groups were similar in baseline characteristics, except the intervention group was slightly older. At final follow-up the smoking cessation rate for participants assigned to the intervention group (n = 6; 11%), while not statistically significant, was double that of usual care (n = 5; 5%; p = 0.131). A meta-analysis of these findings and a similarly underpowered but comparable study of pregnant Indigenous Australian women showed that Indigenous Australian participants assigned to the intervention groups were 2.4 times (95% CI, 1.01-5.5) as likely to quit as participants assigned to usual care.
Conclusions
Culturally appropriate, multi-dimensional Indigenous quit smoking programs can be successfully implemented in remote primary health care. Intensive one-on-one interventions with substantial involvement from Aboriginal and Torres Strait Islander workers are likely to be effective in these settings.
Trial registration
Australian New Zealand Clinical Trials Registry (ACTRN12608000604303).
doi:10.1186/1471-2458-14-32
PMCID: PMC3905726  PMID: 24418597
Indigenous; Aboriginal; Torres Strait Islander; Randomised controlled trial; Smoking cessation; Be Our Ally Beat Smoking (BOABS) Study
14.  Estimates of cancer incidence, mortality and survival in aboriginal people from NSW, Australia 
BMC Cancer  2012;12:168.
Background
Aboriginal status has been unreliably and incompletely recorded in health and vital registration data collections for the most populous areas of Australia, including NSW where 29% of Australian Aboriginal people reside. This paper reports an assessment of Aboriginal status recording in NSW cancer registrations and estimates incidence, mortality and survival from cancer in NSW Aboriginal people using multiple imputation of missing Aboriginal status in NSW Central Cancer Registry (CCR) records.
Methods
Logistic regression modelling and multiple imputation were used to assign Aboriginal status to those records of cancer diagnosed from 1999 to 2008 with missing Aboriginality (affecting 12-18% of NSW cancers registered in this period). Estimates of incidence, mortality and survival from cancer in NSW Aboriginal people were compared with the NSW total population, as standardised incidence and mortality ratios, and with the non-Aboriginal population.
Results
Following imputation, 146 (12.2%) extra cancers in Aboriginal males and 140 (12.5%) in Aboriginal females were found for 1999-2007. Mean annual cancer incidence in NSW Aboriginal people was estimated to be 660 per 100,000 and 462 per 100,000, 9% and 6% higher than all NSW males and females respectively. Mean annual cancer mortality in NSW Aboriginal people was estimated to be 373 per 100,000 in males and 240 per 100,000 in females, 68% and 73% higher than for all NSW males and females respectively. Despite similar incidence of localised cancer, mortality from localised cancer in Aboriginal people is significantly higher than in non-Aboriginal people, as is mortality from cancers with regional, distant and unknown degree of spread at diagnosis. Cancer survival in Aboriginal people is significantly lower: 51% of males and 43% of females had died of the cancer by 5 years following diagnosis, compared to 36% and 33% of non-Aboriginal males and females respectively.
Conclusion
The present study is the first to produce valid and reliable estimates of cancer incidence, survival and mortality in Australian Aboriginal people from NSW. Despite somewhat higher cancer incidence in Aboriginal than in non-Aboriginal people, substantially higher mortality and lower survival in Aboriginal people is only partly explained by more advanced cancer at diagnosis.
doi:10.1186/1471-2407-12-168
PMCID: PMC3520119  PMID: 22559220
15.  Equality and difference: persisting historical themes in health and alcohol policies affecting Indigenous Australians 
Disseminating national health and alcohol policies to Aboriginal and Torres Strait Islander people in Australia has been a challenging task for governments and public servants. This has been for a number of reasons, including the enduring (negative) legacy of past “Aboriginal affairs” policies, the fact that Indigenous health programmes and alcohol programmes have been treated separately since the 1970s, and a more recent context in which the recognition of cultural difference was privileged. Confronted with the politics of difference, health departments were slow to examine avenues through which best practice advice emanating from WHO, and alcohol policies such as harm minimisation and early identification and treatment in primary health care, could be communicated in culturally recognisable ways to independent Indigenous services. In addition, there was hostility towards harm minimisation policies from Indigenous service providers, and Indigenous treatment programmes remained largely committed to abstinence‐oriented modalities and the disease model of alcoholism, despite moves away from these approaches in the mainstream. However, genuinely innovative acute interventions and environmental controls over alcohol have been developed by Indigenous community‐based organisations, approaches that are reinforced by international policy research evidence.
doi:10.1136/jech.2006.057455
PMCID: PMC2659996  PMID: 17699528
Indigenous people; alcohol policy; public health policy
16.  Aboriginal and Torres Strait Islander Worldviews and Cultural Safety Transforming Sexual Assault Service Provision for Children and Young People 
Child Sexual Assault (CSA) in Aboriginal and Torres Strait Islander communities is a complex issue that cannot be understood in isolation from the ongoing impacts of colonial invasion, genocide, assimilation, institutionalised racism and severe socio-economic deprivation. Service responses to CSA are often experienced as racist, culturally, financially and/or geographically inaccessible. A two-day forum, National Yarn Up: Sharing the Wisdoms and Challenges of Young People and Sexual Abuse, was convened by sexual assault services to identify the main practice and policy concerns regarding working with Aboriginal and Torres Strait Islander children and young people (C&YP), families and communities in the context of CSA. The forum also aimed to explore how services can become more accountable and better engaged with the communities they are designed to support. The forum was attended by eighty invited Aboriginal and Torres Strait Islander and non-Aboriginal youth sexual assault managers and workers representing both “victim” and “those who sexually harm others” services. In keeping with Aboriginal Community-Based Research methods forum participants largely directed discussions and contributed to the analysis of key themes and recommendations reported in this article. The need for sexual assault services to prioritise cultural safety by meaningfully integrating Aboriginal and Torres Strait Islander Worldviews emerged as a key recommendation. It was also identified that collaboration between “victims” and “those who sexually harm” services are essential given Aboriginal and Torres Strait Islander C&YP who sexually harm others may have also been victims of sexual assault or physical violence and intergenerational trauma. By working with the whole family and community, a collaborative approach is more likely than the current service model to develop cultural safety and thus increase the accessibility of sexual assault services.
doi:10.3390/ijerph10093818
PMCID: PMC3799501  PMID: 23975109
Aboriginal and Torres Strait Islander people; children and young people; child sexual assault; those who sexually harm others; trauma; gender; cultural safety; aboriginal worldviews; aboriginal community-based participation research methods
17.  Voting with their feet - predictors of discharge against medical advice in Aboriginal and non-Aboriginal ischaemic heart disease inpatients in Western Australia: an analytic study using data linkage 
Background
Discharge Against Medical Advice (DAMA) from hospital is associated with adverse outcomes and is considered an indicator of the responsiveness of hospitals to the needs of Aboriginal and Torres Strait Islander Australians, the indigenous people of Australia. We investigated demographic and clinical factors that predict DAMA in patients experiencing their first-ever inpatient admission for ischaemic heart disease (IHD). The study focuses particularly on the differences in the risk of DAMA in Aboriginal and non-Aboriginal patients while also investigating other factors in their own right.
Methods
A cross-sectional analytical study was undertaken using linked hospital and mortality data with complete coverage of Western Australia. Participants included all first-ever IHD inpatients (aged 25–79 years) admitted between 2005 and 2009, selected after a 15-year clearance period and who were discharged alive. The main outcome measure was DAMA as reflected in the hospital record.
Multiple logistic regression was used to determine disparities in DAMA between Aboriginal and non-Aboriginal patients, adjusting for a range of demographic and clinical factors, including comorbidity based on 5-year hospitalization history. A series of additional models were run on subgroups of the cohort to refine the analysis. Ethics approval was granted by the WA Human Research and the WA Aboriginal Health Ethics Committees.
Results
Aboriginal patients comprised 4.3% of the cohort of 37,304 IHD patients and 23% of the 224 DAMAs. Emergency admission (OR=5.9, 95% CI 2.9-12.2), alcohol admission history (alcohol-related OR=2.9, 95% CI 2.0-4.2) and Aboriginality (OR 2.3, 95% CI 1.5-3.5) were the strongest predictors of DAMA in the multivariate model. Patients living in rural areas while attending non-metropolitan hospitals had a 50% higher risk of DAMA than those living and hospitalised in metropolitan areas. There was consistency in the ORs for Aboriginality in the different multivariate models using restricted sub-cohorts and different Aboriginal identifiers. Sex, IHD diagnosis type and co-morbidity scores imparted different risks in Aboriginal versus non-Aboriginal patients.
Conclusions
Understanding the risks and reasons for DAMA is important for health system policy and proactive management of those at risk of DAMA. Improving care to prevent DAMA should target unplanned admissions, rural hospitals and young men, Aboriginal people and those with alcohol and mental health comorbidities.
doi:10.1186/1472-6963-13-330
PMCID: PMC3765140  PMID: 23962275
Discharge against medical advice; Aboriginal health; Ischaemic Heart Disease; Linked data; Australia
18.  Are the processes recommended by the NHMRC for improving Cardiac Rehabilitation (CR) for Aboriginal and Torres Strait Islander people being implemented?: an assessment of CR Services across Western Australia 
Background
Cardiovascular disease is the major cause of premature death of Indigenous Australians, and despite evidence that cardiac rehabilitation (CR) and secondary prevention can reduce recurrent disease and deaths, CR uptake is suboptimal. The National Health and Medical Research Council (NHMRC) guidelines Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander peoples, published in 2005, provide checklists for services to assist them to reduce the service gap for Indigenous people. This study describes health professionals' awareness, implementation, and perspectives of barriers to implementation of these guidelines based on semi-structured interviews conducted between November 2007 and June 2008 with health professionals involved in CR within mainstream health services in Western Australia (WA). Twenty-four health professionals from 17 services (10 rural, 7 metropolitan) listed in the WA Directory of CR services were interviewed.
Results
The majority of respondents reported that they were unfamiliar with the NHMRC guidelines and as a consequence implementation of the recommendations was minimal and inconsistently applied. Respondents reported that they provided few in-patient CR-related services to Indigenous patients, services upon discharge were erratic, and they had few Indigenous-specific resources for patients. Issues relating to workforce, cultural competence, and service linkages emerged as having most impact on design and delivery of CR services for Indigenous people in WA.
Conclusions
This study has demonstrated limited awareness and poor implementation in WA of the recommendations of the NHMRC Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander Peoples: A Guide for Health Professionals. The disproportionate burden of CVD morbidity and mortality among Indigenous Australians mandates urgent attention to this problem and alternative approaches to CR delivery. Dedicated resources and alternative approaches to CR delivery for Indigenous Australians are needed.
doi:10.1186/1743-8462-6-29
PMCID: PMC2806388  PMID: 20042097
19.  Rheumatic Fever Follow-Up Study (RhFFUS) protocol: a cohort study investigating the significance of minor echocardiographic abnormalities in Aboriginal Australian and Torres Strait Islander children 
Background
In Australia, rheumatic heart disease (RHD) is almost exclusively restricted to Aboriginal Australian and Torres Strait Islander people with children being at highest risk. International criteria for echocardiographic diagnosis of RHD have been developed but the significance of minor heart valve abnormalities which do not reach these criteria remains unclear. The Rheumatic Fever Follow-Up Study (RhFFUS) aims to clarify this question in children and adolescents at high risk of RHD.
Methods/design
RhFFUS is a cohort study of Aboriginal and/or Torres Strait Islander children and adolescents aged 8–17 years residing in 32 remote Australian communities. Cases are people with non-specific heart valve abnormalities detected on prior screening echocardiography. Controls (two per case) are age, gender, community and ethnicity-matched to cases and had a prior normal screening echocardiogram. Participants will have echocardiography about 3 years after initial screening echocardiogram and enhanced surveillance for any history suggestive of acute rheumatic fever (ARF). It will then be determined if cases are at higher risk of (1) ARF or (2) developing progressive echocardiography-detected valve changes consistent with RHD.
The occurrence and timing of episodes of ARF will be assessed retrospectively for 5 years from the time of the RhFFUS echocardiogram. Episodes of ARF will be identified through regional surveillance and notification databases, carer/subject interviews, primary healthcare history reviews, and hospital separation diagnoses.
Progression of valvular abnormalities will be assessed prospectively using transthoracic echocardiography and standardized operating and reporting procedures. Progression of valve lesions will be determined by specialist cardiologist readers who will assess the initial screening and subsequent RhFFUS screening echocardiogram for each participant. The readers will be blinded to the initial assessment and temporal order of the two echocardiograms.
Discussion
RhFFUS will determine if subtle changes on echocardiography represent the earliest changes of RHD or mere variations of normal heart anatomy. In turn it will inform criteria to be used in determining whether secondary antibiotic prophylaxis should be utilized in individuals with no clear history of ARF and minor abnormalities on echocardiography. RhFFUS will also inform the ongoing debate regarding the potential role of screening echocardiography for the detection of RHD in this setting.
doi:10.1186/1471-2261-12-111
PMCID: PMC3536578  PMID: 23186515
Rheumatic heart disease; Acute rheumatic fever; Screening; Aboriginal; Torres Strait Islander; Indigenous; Diagnosis; Prevention; Australia; Echocardiography
20.  Implementing computerised Aboriginal and Torres Strait Islander health checks in primary care for clinical care and research: a process evaluation 
Background
Paper-based Aboriginal and Torres Strait Islander health checks have promoted a preventive approach to primary care and provided data to support research at the Inala Indigenous Health Service, south-west Brisbane, Australia. Concerns about the limitations of paper-based health checks prompted us to change to a computerised system to realise potential benefits for clinical services and research capability. We describe the rationale, implementation and anticipated benefits of computerised Aboriginal and Torres Strait Islander health checks in one primary health care setting.
Methods
In May 2010, the Inala Indigenous Health Service commenced a project to computerise Aboriginal and Torres Strait Islander child, adult, diabetic, and antenatal health checks. The computerised health checks were launched in September 2010 and then evaluated for staff satisfaction, research consent rate and uptake. Ethical approval for health check data to be used for research purposes was granted in December 2010.
Results
Three months after the September 2010 launch date, all but two health checks (378 out of 380, 99.5%) had been completed using the computerised system. Staff gave the system a median mark of 8 out of 10 (range 5-9), where 10 represented the highest level of overall satisfaction. By September 2011, 1099 child and adult health checks, 138 annual diabetic checks and 52 of the newly introduced antenatal checks had been completed. These numbers of computerised health checks are greater than for the previous year (2010) of paper-based health checks with a risk difference of 0.07 (95% confidence interval 0.05, 0.10). Additionally, two research projects based on computerised health check data were underway.
Conclusions
The Inala Indigenous Health Service has demonstrated that moving from paper-based Aboriginal and Torres Strait Islander health checks to a system using computerised health checks is feasible and can facilitate research. We expect computerised health checks will improve clinical care and continue to enable research projects using validated data, reflecting the local Aboriginal and Torres Strait Islander community’s priorities.
doi:10.1186/1472-6947-13-108
PMCID: PMC3849740  PMID: 24053425
Computerised medical record systems; Aboriginal and Torres Strait Islander health; Primary health care
21.  The study protocol for a randomized controlled trial of a family-centred tobacco control program about environmental tobacco smoke (ETS) to reduce respiratory illness in Indigenous infants 
BMC Public Health  2010;10:114.
Background
Acute respiratory illness (ARI) is the most common cause of acute presentations and hospitalisations of young Indigenous children in Australia and New Zealand (NZ). Environmental tobacco smoke (ETS) from household smoking is a significant and preventable contributor to childhood ARI. This paper describes the protocol for a study which aims to test the efficacy of a family-centred tobacco control program about ETS to improve the respiratory health of Indigenous infants in Australia and New Zealand. For the purpose of this paper 'Indigenous' refers to Australia's Aboriginal and Torres Strait Islander peoples when referring to Australian Indigenous populations. In New Zealand, the term 'Indigenous' refers to Māori.
Methods/Design
This study will be a parallel, randomized, controlled trial. Participants will be Indigenous women and their infants, half of whom will be randomly allocated to an 'intervention' group, who will receive the tobacco control program over three home visits in the first three months of the infant's life and half to a control group receiving 'usual care' (i.e. they will not receive the tobacco control program). Indigenous health workers will deliver the intervention, the goal of which is to reduce or eliminate infant exposure to ETS. Data collection will occur at baseline (shortly after birth) and when the infant is four months and one year of age. The primary outcome is a doctor-diagnosed, documented case of respiratory illness in participating infants.
Discussion
Interventions aimed at reducing exposure of Indigenous children to ETS have the potential for significant benefits for Indigenous communities. There is currently a dearth of evidence for the effect of tobacco control interventions to reduce children's exposure to ETS among Indigenous populations. This study will provide high-quality evidence of the efficacy of a family-centred tobacco control program on ETS to reduce respiratory illness. Outcomes of our study will be important and significant for Indigenous tobacco control in Australia and New Zealand and prevention of respiratory illness in children.
Trial registration
Australian New Zealand Clinical Trials Registry (ACTRN12609000937213)
doi:10.1186/1471-2458-10-114
PMCID: PMC2846866  PMID: 20205950
22.  Aboriginal Families Study: a population-based study keeping community and policy goals in mind right from the start 
Background
Australian Aboriginal and Torres Strait Islander women are between two to five times more likely to die in childbirth than non-Aboriginal women, and two to three times more likely to have a low birthweight infant. Babies with a low birthweight are more likely to have chronic health problems in adult life. Currently, there is limited research evidence regarding effective interventions to inform new initiatives to strengthen antenatal care for Aboriginal families.
Method/Design
The Aboriginal Families Study is a cross sectional population-based study investigating the views and experiences of Aboriginal and non-Aboriginal women having an Aboriginal baby in the state of South Australia over a 2-year period. The primary aims are to compare the experiences and views of women attending standard models of antenatal care with those accessing care via Aboriginal Family Birthing Program services which include Aboriginal Maternal Infant Care (AMIC) Workers as members of the clinical team; to assess factors associated with early and continuing engagement with antenatal care; and to use the information to inform strengthening of services for Aboriginal families. Women living in urban, regional and remote areas of South Australia have been invited to take part in the study by completing a structured interview or, if preferred, a self-administered questionnaire, when their baby is between 4–12 months old.
Discussion
Having a baby is an important life event in all families and in all cultures. How supported women feel during pregnancy, how women and families are welcomed by services, how safe they feel coming in to hospitals to give birth, and what happens to families during a hospital stay and in the early months after the birth of a new baby are important social determinants of maternal, newborn and child health outcomes. The Aboriginal Families Study builds on consultation with Aboriginal communities across South Australia. The project has been implemented with guidance from an Aboriginal Advisory Group keeping community and policy goals in mind right from the start. The results of the study will provide a unique resource to inform quality improvement and strengthening of services for Aboriginal families.
doi:10.1186/1475-9276-12-41
PMCID: PMC3689616  PMID: 23767813
Antenatal care; Health inequalities; Indigenous health; Maternal health; Participatory research; Perinatal health outcomes
23.  Patterns and correlates of self-reported racial discrimination among Australian Aboriginal and Torres Strait Islander adults, 2008–09: analysis of national survey data 
Background
There is now considerable evidence that racism is a pernicious and enduring social problem with a wide range of detrimental outcomes for individuals, communities and societies. Although indigenous people worldwide are subjected to high levels of racism, there is a paucity of population-based, quantitative data about the factors associated with their reporting of racial discrimination, about the settings in which such discrimination takes place, and about the frequency with which it is experienced. Such information is essential in efforts to reduce both exposure to racism among indigenous people and the harms associated with such exposure.
Methods
Weighted data on self-reported racial discrimination from over 7,000 Indigenous Australian adults participating in the 2008–09 National Aboriginal and Torres Strait Islander Survey, a nationally representative survey conducted by the Australian Bureau of Statistics, were analysed by socioeconomic, demographic and cultural factors.
Results
More than one in four respondents (27%) reported experiencing racial discrimination in the past year. Racial discrimination was most commonly reported in public (41% of those reporting any racial discrimination), legal (40%) and work (30%) settings. Among those reporting any racial discrimination, about 40% experienced this discrimination most or all of the time (as opposed to a little or some of the time) in at least one setting. Reporting of racial discrimination peaked in the 35–44 year age group and then declined. Higher reporting of racial discrimination was associated with removal from family, low trust, unemployment, having a university degree, and indicators of cultural identity and participation. Lower reporting of racial discrimination was associated with home ownership, remote residence and having relatively few Indigenous friends.
Conclusions
These data indicate that racial discrimination is commonly experienced across a wide variety of settings, with public, legal and work settings identified as particularly salient. The observed relationships, while not necessarily causal, help to build a detailed picture of self-reported racial discrimination experienced by Indigenous people in contemporary Australia, providing important evidence to inform anti-racism policy.
doi:10.1186/1475-9276-12-47
PMCID: PMC3703299  PMID: 23816052
Racism; Discrimination; Aboriginal; Indigenous; Australia
24.  A simple diabetes vascular severity staging instrument and its application to a Torres Strait Islander and Aboriginal adult cohort of north Australia 
Background
To develop an instrument that predicts diabetes-related vascular disease severity using routinely collected data on Australian Aboriginal and Torres Strait Islander adults with type 2 diabetes, in the absence of diabetes duration.
Methods
A complex diabetes severity classification system was simplified and adapted for use with an Australian Aboriginal and Torres Strait Islander adult population with type 2 diabetes in north Queensland. Detailed vascular health risks and morbidities were mapped to routinely collected measures. Individual–level health screening, hospital separation and mortality data were linked and used to plot mean monthly in-patient hospital cost and percent mortality by disease severity as defined by the newly developed instrument, to test construct validity.
Results
The revised instrument consists of four combined diabetes-related microvascular and macrovascular stages that range from least severe (stage 1) to severe irreversible vascular impairment (stage 4). When applied to data of an Aboriginal and Torres Strait Islander Australian population the instrument showed good construct validity, predicting higher hospital cost and mortality as vascular disease severity increased.
Conclusions
This instrument discriminates between levels of diabetes-related vascular disease severity, displays good construct validity by predicting increased hospital cost and mortality with worsening severity and can be populated with routinely collected data. It may assist with future health service research and its use could be extended to practice settings for health care planning for diabetes management programs and monitoring vascular disease progression.
doi:10.1186/1472-6963-12-185
PMCID: PMC3409067  PMID: 22759334
Diabetes vascular staging instrument; Aboriginal and Torres Strait Islander Australians
25.  Do competing demands of physical illness in type 2 diabetes influence depression screening, documentation and management in primary care: a cross-sectional analytic study in Aboriginal and Torres Strait Islander primary health care settings 
Background
Relatively little is known about how depression amongst people with chronic illness is identified and managed in diverse primary health care settings. We evaluated the role of complex physical needs in influencing current practice of depression screening, documentation and antidepressant prescriptions during a 12-month period, among adults with Type 2 diabetes attending Aboriginal and Torres Strait Islander primary care health centres in Australia.
Methods
We analysed clinical audit data from 44 health centres participating in a continuous quality improvement initiative, using previously reported standard sampling and data extraction protocols. Eligible patients were those with Type 2 diabetes with health centre attendance within the past 12 months. We compared current practice in depression screening, documentation and antidepressant prescription between patients with different disease severity and co-morbidity. We used random effects multiple logistic regression models to adjust for potential confounders and for clustering by health centre.
Results
Among the 1174 patients with diabetes included, median time since diagnosis was 7 years, 19% of patients had a co-existing diagnosis of Ischaemic Heart Disease and 1/3 had renal disease. Some 70% of patients had HbAc1>7.0%; 65% had cholesterol >4.0 mmol1-1 and 64% had blood pressure>130/80 mmHg. Documentation of screening for depression and of diagnosed depression were low overall (5% and 6% respectively) and lower for patients with renal disease (Adjusted odds ratio [AOR] 0.21; 95% confidence interval [CI] 0.14 to 0.31 and AOR 0.34; 95% CI 0.15 to 0.75), and for those with poorly controlled disease (HbA1c>7.00 (AOR 0.40; 95% CI 0.23 to 0.68 and AOR 0.51; 95% CI 0.30 to 84)). Screening for depression was lower for those on pharmaceutical treatment for glycaemic control compared to those not on such treatment. Antidepressant prescription was not associated with level of diabetes control or disease severity.
Conclusions
Background levels of depression screening and documentation were low overall and significantly lower for patients with greater disease severity. Strategies to improve depression care for vulnerable populations are urgently required. An important first step in the Australian Indigenous primary care context is to identify and address barriers to the use of current clinical guidelines for depression screening and care.
doi:10.1186/1752-4458-7-16
PMCID: PMC3681658  PMID: 23738766
Diabetes mellitus; Type 2; Depression; Quality improvement; Indigenous health services

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