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1.  Enhanced reporting of deaths among Aboriginal and Torres Strait Islander peoples using linked administrative health datasets 
Aboriginal and Torres Strait Islander peoples are under-reported in administrative health datasets in NSW, Australia. Correct reporting of Aboriginal and Torres Strait Islander peoples is essential to measure the effectiveness of policies and programmes aimed at reducing the health disadvantage experienced by Aboriginal and Torres Strait Islander peoples. This study investigates the potential of record linkage to enhance reporting of deaths among Aboriginal and Torres Strait Islander peoples in NSW, Australia.
Australian Bureau of Statistics death registration data for 2007 were linked with four population health datasets relating to hospitalisations, emergency department attendances and births. Reporting of deaths was enhanced from linked records using two methods, and effects on patterns of demographic characteristics and mortality indicators were examined.
Reporting of deaths increased by 34.5% using an algorithm based on a weight of evidence of a person being Aboriginal or Torres Strait Islander, and by 56.6% using an approach based on 'at least one report' of a person being Aboriginal or Torres Strait Islander. The increase was relatively greater in older persons and those living in less geographically remote areas. Enhancement resulted in a reduction in the urban-remote differential in median age at death and increases in standardised mortality ratios particularly for chronic conditions.
Record linkage creates a statistical construct that helps to correct under-reporting of deaths and potential bias in mortality statistics for Aboriginal and Torres Strait Islander peoples.
PMCID: PMC3413579  PMID: 22747900
2.  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.
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.
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.
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)
PMCID: PMC3349500  PMID: 22439653
Indigenous; Aboriginal; Torres Strait Islander; Randomised controlled trial; Smoking cessation; Study protocol; Be Our Ally Beat Smoking (BOABS) Study
3.  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 
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.
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.
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.
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.
PMCID: PMC3493324  PMID: 22747850
4.  Serum vitamin D levels, diabetes and cardio-metabolic risk factors in Aboriginal and Torres Strait Islander Australians 
Low levels of serum 25–hydroxy vitamin D (25(OH)D), have been associated with development of type 2 diabetes and cardiovascular disease (CVD); however there are limited data on serum 25(OH)D in Indigenous Australians, a population at high risk for both diabetes and CVD. We aimed to assess levels of serum 25(OH)D in Aboriginal and Torres Strait Islander Australians and to explore relationships between 25(OH)D and cardio-metabolic risk factors and diabetes.
592 Aboriginal and/or Torres Strait Islander Australian participants of The eGFR (estimated glomerular filtration rate) Study, a cross-sectional analysis of a cohort study performed in 2007–2011, from urban and remote centres within communities, primary care and tertiary hospitals across Northern Territory, Far North Queensland and Western Australia. Assessment of serum 25(OH)D, cardio-metabolic risk factors (central obesity, diabetes, hypertension, history of cardiovascular disease, current smoker, low HDL-cholesterol), and diabetes (by history or HbA1c ≥6.5%) was performed. Associations were explored between 25(OH)D and outcome measures of diabetes and number of cardio-metabolic risk factors.
The median (IQR) serum 25(OH)D was 60 (45–77) nmol/L, 31% had 25(OH)D <50 nmol/L. For participants with 25(OH)D < 50 vs ≥50 nmol/L, cardio-metabolic risk profile differed for: diabetes (54%, 36% p < 0.001), past history of cardiovascular disease (16%, 9%, p = 0.014), waist-hip ratio (0.98, 0.92, p < 0.001), urine albumin-creatinine ratio (2.7, 1.5 mg/mmol, p < 0.001). The OR (95% CI) for diabetes was 2.02 (1.03 – 3.95) for people in the lowest vs highest tertiles of 25(OH)D (<53 vs >72 nmol/L, respectively) after adjusting for known cardio-metabolic risk factors.
The percentage of 25(OH)D levels <50 nmol/L was high among Aboriginal and Torres Strait Islander Australians from Northern and Central Australia. Low 25(OH)D level was associated with adverse cardio-metabolic risk profile and was independently associated with diabetes. These findings require exploration in longitudinal studies.
PMCID: PMC4155864  PMID: 25197323
25-hydroxy vitamin D; Type 2 diabetes; Aboriginal; Cardiovascular risk
5.  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.
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.
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).
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.
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).
PMCID: PMC3905726  PMID: 24418597
Indigenous; Aboriginal; Torres Strait Islander; Randomised controlled trial; Smoking cessation; Be Our Ally Beat Smoking (BOABS) Study
6.  Validation of risk assessment scales and predictors of intentions to quit smoking in Australian Aboriginal and Torres Strait Islander peoples: a cross-sectional survey protocol 
BMJ Open  2014;4(6):e004887.
Tobacco smoking is a very significant behavioural risk factor for the health of Australian Aboriginal and Torres Strait Islanders, and is embedded as a social norm. With a focus on women of childbearing age, and men of similar age, this project aims to determine how Aboriginal and Torres Strait Islander smokers assess smoking risks and how these assessments contribute to their intentions to quit. The findings from this pragmatic study should contribute to developing culturally targeted interventions.
Methods and analysis
A cross-sectional study using quantitative and qualitative data. A total of 120 Aboriginal and Torres Strait Islander community members aged 18–45 years will be recruited at community events and through an Aboriginal Community Controlled Health Service (ACCHS). Participants will be interviewed using a tablet computer or paper survey. The survey instrument uses modified risk behaviour scales, that is, the Risk Behaviour Diagnosis (RBD) scale and the Smoking Risk Assessment Target (SRAT) (adapted from the Risk Acceptance Ladder) to determine whether attitudes of Aboriginal and Torres Strait Islander smokers to health risk messages are predictors of intentions to quit smoking.
The questionnaire will be assessed for face and content validity with a panel of Indigenous community members. The internal consistency of the RBD subscales and their patterns of correlation will be explored. Multivariate analyses will examine predictors of intentions to quit. This will include demographics such as age, gender, nicotine dependence, household smoking rules and perceived threat from smoking and efficacy for quitting. The two risk-assessment scales will be examined to see whether participant responses are correlated.
Ethics and dissemination
The Aboriginal Health & Medical Research Council Ethics Committee and university ethics committees approved the study. The results will be published in a peer-reviewed journal and a community report will be disseminated by the ACCHS, and at community forums.
Note about terminology
We use the term Aboriginal and Torres Strait Islander peoples, except where previous research has reported findings from only one group for example, Aboriginal people. Indigenous is used here to refer to Indigenous peoples in the international context, and issues, policies or systems, for example, Indigenous health, Indigenous tobacco control.
PMCID: PMC4054635  PMID: 24902729
7.  Comparison of the uptake of health assessment items for Aboriginal and Torres Strait Islander people and other Australians: Implications for policy 
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.
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.
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.
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.
PMCID: PMC1239906  PMID: 16150154
8.  Study protocol: a pragmatic randomised controlled trial of a 12-week physical activity and nutritional education program for overweight Aboriginal and Torres Strait Islander women 
BMC Public Health  2011;11:655.
Aboriginal and Torres Strait Islander women have a higher prevalence and incidence of obesity and type 2 diabetes than non-Indigenous Australian women. Physical inactivity is a key modifiable risk factor for obesity and evidence shows that even modest reductions in waist circumference (WC) have significant health benefits. Trialing physical activity programs in difficult-to-reach high risk groups, especially urban Indigenous Australians poses distinct implementation challenges.
The trial objective is to evaluate the effectiveness of a structured 12-week physical activity group program with nutritional advice. The design is a pragmatic randomised controlled trial. This study protocol describes the implementation and evaluation of the program. Participants are randomised into either an intervention or waitlisted group. The waitlisted group have a 12 month waiting period before commencing the 12-week program. Participant data is collected at baseline, 12, 24 and 52 weeks. Participants are Aboriginal and Torres Strait Islander women, aged 18-64 years with a waist circumference greater than 80 centimetres residing in Adelaide. The primary outcome measure is WC change immediately post program from baseline. Secondary outcomes include short term and long term changes in WC, weight, blood pressure, fasting blood glucose, insulin, insulin resistance (calculated HOMA), haemoglobin A1C (HbA1C), triglycerides and C-reactive protein (CRP). Behavioural and psychosocial surveys are administered to assess physical activity, dietary intake and the participant's motivation, self-efficacy and perceived social support for physical activity. Qualitative interviews focusing on participants' motivation, enablers and barriers to healthy eating and physical activity will be undertaken. Implementation fidelity and participation are also assessed.
The Aboriginal and Torres Strait Islander Women's Fitness Program (WFP) is designed to provide a rigorous physiological and client-based evaluation of a structured 12-week program aimed to increase metabolic fitness and reduce WC in this high risk population. Evaluation results aim to provide the support necessary to design programs that are accessible, affordable and effective at reducing WC, while also improving the metabolic profile of overweight Aboriginal and Torres Strait Islander women.
Trial registration
Australian New Zealand Clinical Trials Registry ACTRN12610000224022
PMCID: PMC3175188  PMID: 21851643
9.  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 
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.
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.
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.
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.
PMCID: PMC3765140  PMID: 23962275
Discharge against medical advice; Aboriginal health; Ischaemic Heart Disease; Linked data; Australia
10.  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.
PMCID: PMC3729061  PMID: 23908887
11.  A service-level action research intervention to improve identification and treatment of cannabis and related mental health issues in young Indigenous Australians: a study protocol 
BMJ Open  2014;4(7):e005689.
Regular cannabis use is associated with negative mental health impacts including psychosis, depression and anxiety. Rates of cannabis use have increased in Aboriginal and Torres Strait Islander communities in northern Australia within the last two decades, presenting a significant increased risk to young people's mental health in these regions. Improved screening, early detection and treatment for cannabis-related mental health issues are urgently required. This paper describes a service-level action research intervention and evaluation protocol for use in the few services where it is possible to engage young Aboriginal and Torres Strait Islander Australians.
The protocol is being developed in two services where youth mental health is core business: a primary healthcare centre and a youth service in the Cairns and hinterland region, far north Queensland. The protocol calls first for baseline data to be collected using staff and client surveys; network mapping; and analysis of screening, treatment and referral rates. The protocol's intervention phase is driven by service needs identified from baseline data. Intervention strategies focus on implementing/enhancing cannabis screening instruments and processes in line with current best practice; enhancing networks with external drug and mental health services; developing culturally acceptable training and resources; developing activities aiming to reduce cannabis use in young Aboriginal and Torres Strait Islander clients using the services. The protocol requires implementation of the multilevel intervention within each service for 1 year, with follow-up data then collected and compared to baseline. Process evaluation identifies the more effective intervention strategies and documents the challenges to be overcome for full implementation.
Ethics and dissemination
Ethics approval was provided by The James Cook University, Human Research Ethics Committee. Ethics Approval Number H5322. Peer-reviewed publications will also be used to disseminate the finding. Results will also be discussed with stakeholder organisations.
PMCID: PMC4120335  PMID: 25082422
Mental Health
12.  Implementing computerised Aboriginal and Torres Strait Islander health checks in primary care for clinical care and research: a process evaluation 
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.
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.
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.
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.
PMCID: PMC3849740  PMID: 24053425
Computerised medical record systems; Aboriginal and Torres Strait Islander health; Primary health care
13.  Pre-pregnancy predictors of hypertension in pregnancy among Aboriginal and Torres Strait Islander women in north Queensland, Australia; a prospective cohort study 
BMC Public Health  2013;13:138.
Compared to other Australian women, Indigenous women are frequently at greater risk for hypertensive disorders of pregnancy. We examined pre-pregnancy factors that may predict hypertension in pregnancy in a cohort of Aboriginal and Torres Strait Islander women in north Queensland.
Data on a cohort of 1009 Indigenous women of childbearing age (15–44 years) who participated in a 1998–2000 health screening program in north Queensland were combined with 1998–2008 Queensland hospitalisations data using probabilistic data linkage. Data on the women in the cohort who were hospitalised for birth (n = 220) were further combined with Queensland perinatal data which identified those diagnosed with hypertension in pregnancy.
Of 220 women who gave birth, 22 had hypertension in the pregnancy after their health check. The mean age of women with and without hypertension was similar (23.7 years and 23.9 years respectively) however Aboriginal women were more affected compared to Torres Strait Islanders. Pre-pregnancy adiposity and elevated blood pressure at the health screening program were predictors of a pregnancy affected by hypertension. After adjusting for age and ethnicity, each 1 cm increase in waist circumference showed a 4% increased risk for hypertension in pregnancy (PR 1.04; 95% CI; 1.02-1.06); each 1 point increase in BMI showed a 9% adjusted increase in risk (1.09; 1.04-1.14). For each 1 mmHg increase in baseline systolic blood pressure there was an age and ethnicity adjusted 6% increase in risk and each 1 mmHg increase in diastolic blood pressure showed a 7% increase in risk (1.06; 1.03-1.09 and 1.07; 1.03-1.11 respectively). Among those free of diabetes at baseline, the presence of the metabolic syndrome (International Diabetes Federation criteria) predicted over a three-fold increase in age-ethnicity-adjusted risk (3.5; 1.50-8.17).
Pre-pregnancy adiposity and features of the metabolic syndrome among these young Aboriginal and Torres Strait Islander women track strongly to increased risk of hypertension in pregnancy with associated risks to the health of babies.
PMCID: PMC3599805  PMID: 23410045
Indigenous; Pre-pregnancy; Hypertension; Preeclampsia
14.  The overall health and risk factor profile of Australian Aboriginal and Torres Strait Islander participants from the 45 and up study 
BMC Public Health  2013;13:661.
Despite large disparities in health outcomes between Aboriginal and non-Aboriginal Australians, detailed evidence on the health and lifestyle characteristics of older Aboriginal Australians is lacking. The aim of this study is to quantify socio-demographic and health risk factors and mental and physical health status among Aboriginal participants from the 45 and Up Study and to compare these with non-Aboriginal participants from the study.
The 45 and Up Study is a large-scale study of individuals aged 45 years and older from the general population of New South Wales, Australia responding to a baseline questionnaire distributed from 2006–2008. Odds ratios (OR) and 95% confidence intervals (CI) of self-reported responses from the baseline questionnaire for Aboriginal versus non-Aboriginal participants relating to socio-demographic factors, health risk factors, current and past medical and surgical history, physical disability, functional health limitations and levels of current psychological distress were calculated using unconditional logistic regression, with adjustments for age and sex.
Overall, 1939 of 266,661 45 and Up Study participants examined in this study identified as Aboriginal and/or Torres Strait Islander (0.7%). Compared to non-Aboriginal participants, Aboriginal participants were significantly more likely to be: younger (mean age 58 versus 63 years); without formal educational qualifications (age- and sex- adjusted OR = 6.2, 95% CI 5.3-7.3); of unemployed (3.7, 2.9-4.6) or disabled (4.6, 3.9-5.3) work status; and with a household income < $20,000/year versus ≥ $70,000/year (5.8, 5.0-6.9). Following additional adjustment for income and education, Aboriginal participants were significantly more likely than non-Aboriginal participants to: be current smokers (2.4, 2.0-2.8), be obese (2.1, 1.8-2.5), have ever been diagnosed with certain medical conditions (especially: diabetes [2.1, 1.8-2.4]; depression [1.6, 1.4-1.8] and stroke [1.8, 1.4-2.3]), have care-giving responsibilities (1.8, 1.5-2.2); have a major physical disability (2.6, 2.2-3.1); have severe physical functional limitation (2.9, 2.4-3.4) and have very high levels of psychological distress (2.4, 2.0-3.0).
Aboriginal participants from the 45 and Up Study experience greater levels of disadvantage and have greater health needs (including physical disability and psychological distress) compared to non-Aboriginal participants. The study highlights the need to address the social determinants of health in Australia and to provide appropriate mental health services and disability support for older Aboriginal people.
PMCID: PMC3717143  PMID: 23866062
Aboriginal Australians; Torres Strait Islanders; 45 and Up study
15.  Social determinants and lifestyle risk factors only partially explain the higher prevalence of food insecurity among Aboriginal and Torres Strait Islanders in the Australian state of Victoria: a cross-sectional study 
BMC Public Health  2014;14:598.
The prevalence of food insecurity is substantially higher among Australians of Aboriginal or Torres Strait Islander descent. The purpose of this study is to explain the relationship between food insecurity and Aboriginal and Torres Islander status in the state of Victoria.
Data were obtained from the 2008 Victorian Population Health Survey; a cross-sectional landline computer-assisted telephone interview survey of 34,168 randomly selected Victorians aged 18 years and older; including 339 Aboriginal and Torres Strait Islanders. We categorised a respondent as food insecure, if in the previous 12 months, they reported having run out of food and not being able to afford to buy more. We used multivariable logistic regression to adjust for age, sex, socioeconomic status (household income), lifestyle risk factors (smoking, alcohol consumption and obesity), social support (ability to get help from family, friends or neighbours), household composition (lone parent status, household with a child, and household size), and geographic location (rurality).
Aboriginal and Torres Strait Islanders (20.3%) were more likely than their non-Aboriginal and Torres Strait Islander counterparts (5.4%) to have experienced food insecurity; odds ratio (OR) = 4.5 (95% CI; 2.7-7.4). Controlling for age, SES, smoking, obesity and inability to get help from family or friends reduced the odds ratio by 38%; ORadjusted = 2.8 (1.6-5.0).
Social determinants and lifestyle risk factors only partially explained the higher prevalence of food insecurity among Aboriginal and Torres Strait Islanders in Victoria. Further research is needed to explain the disparity in food insecurity between the two populations in order to inform and guide corrective action.
PMCID: PMC4076758  PMID: 24924598
16.  Inclusion of mobile phone numbers into an ongoing population health survey in New South Wales, Australia: design, methods, call outcomes, costs and sample representativeness 
In Australia telephone surveys have been the method of choice for ongoing jurisdictional population health surveys. Although it was estimated in 2011 that nearly 20% of the Australian population were mobile-only phone users, the inclusion of mobile phone numbers into these existing landline population health surveys has not occurred. This paper describes the methods used for the inclusion of mobile phone numbers into an existing ongoing landline random digit dialling (RDD) health survey in an Australian state, the New South Wales Population Health Survey (NSWPHS). This paper also compares the call outcomes, costs and the representativeness of the resultant sample to that of the previous landline sample.
After examining several mobile phone pilot studies conducted in Australia and possible sample designs (screening dual-frame and overlapping dual-frame), mobile phone numbers were included into the NSWPHS using an overlapping dual-frame design. Data collection was consistent, where possible, with the previous years’ landline RDD phone surveys and between frames. Survey operational data for the frames were compared and combined. Demographic information from the interview data for mobile-only phone users, both, and total were compared to the landline frame using χ2 tests. Demographic information for each frame, landline and the mobile-only (equivalent to a screening dual frame design), and the frames combined (with appropriate overlap adjustment) were compared to the NSW demographic profile from the 2011 census using χ2 tests.
In the first quarter of 2012, 3395 interviews were completed with 2171 respondents (63.9%) from the landline frame (17.6% landline only) and 1224 (36.1%) from the mobile frame (25.8% mobile only). Overall combined response, contact and cooperation rates were 33.1%, 65.1% and 72.2% respectively. As expected from previous research, the demographic profile of the mobile-only phone respondents differed most (more that were young, males, Aboriginal and Torres Strait Islanders, overseas born and single) compared to the landline frame responders. The profile of respondents from the two frames combined, with overlap adjustment, was most similar to the latest New South Wales (NSW) population profile.
The inclusion of the mobile phone numbers, through an overlapping dual-frame design, did not impact negatively on response rates or data collection, and although costing more the design was still cost-effective because of the additional interviews that were conducted with young people, Aboriginal and Torres Strait Islanders and people who were born overseas resulting in a more representative overall sample.
PMCID: PMC3536693  PMID: 23173849
Sample survey; Mobile phone; Sampling frame
17.  Postpartum care for Aboriginal and non-Aboriginal women with Gestational Diabetes Mellitus across urban, rural and remote locations: a protocol for a cohort linkage study 
SpringerPlus  2013;2:576.
Gestational diabetes mellitus (GDM) is increasing, along with obesity and type 2 diabetes (T2DM), with Aboriginal and Torres Strait Islander (Aboriginala) women in Australia particularly affected. GDM causes serious complications in pregnancy, birth, and the longer term, for women and their infants. Women with GDM have an eightfold risk of developing T2DM after pregnancy, compared to women without GDM. Indigenous women have an even higher risk, at a younger age, and progress more quickly from GDM to T2DM, compared to non-Indigenous women. If left undetected and untreated, T2DM increases risks in subsequent pregnancies, and can lead to heart disease, stroke, kidney failure, limb amputations and blindness for the woman in the longer term. A GDM diagnosis offers a ‘window of opportunity’ to provide acceptable and effective prevention, treatment, and postpartum care. Low rates of postpartum T2DM screening are reported among non-Aboriginal women in Australia and Indigenous women in other countries, however, data for Aboriginal women in Australia are scarce. A healthy diet, exercise and breastfeeding can delay the onset of T2DM, and together with T2DM screening are recommended elements of postpartum care for women with GDM. This paper describes methods for a study evaluating postpartum care among Aboriginal and non-Aboriginal women with GDM.
This retrospective cohort includes all women who gave birth at Cairns Hospital in far north Queensland, Australia, from 2004 to 2010, coded as having GDM in the Cairns Hospital Clinical Coding system. Data is being linked with the Midwives Perinatal Data Collection, and the three local laboratories. Hospital medical records are being reviewed to validate accuracy of GDM case ascertainment, and gather information on breastfeeding and provision of dietary advice. Survival analysis is being used to estimate time to screening, and rates of progression from GDM to T2DM. Logistic regression is being used to compare postpartum care between Aboriginal and non-Aboriginal women, and assess factors that may be associated with provision of postpartum care.
There are challenges to collecting postpartum data for women with GDM, however, this research is urgently needed to ensure adequate postpartum care is provided for women with GDM.
Electronic supplementary material
The online version of this article (doi:10.1186/2193-1801-2-576) contains supplementary material, which is available to authorized users.
PMCID: PMC4320232
Gestational diabetes mellitus; Type 2 diabetes mellitus; Diabetes; Pregnancy; Aboriginal; Indigenous
18.  Mortality in an Aboriginal Medical Service (Redfern) cohort 
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.
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.
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.
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.
PMCID: PMC3602118  PMID: 23391275
19.  Early identification and preventive care for elevated cardiovascular disease risk within a remote Australian Aboriginal primary health care service 
Cardiovascular disease (CVD) is the single greatest contributor to the gap in life expectancy between Indigenous and non-Indigenous Australians. Our objective is to determine if holistic CVD risk assessment, introduced as part of the new Aboriginal and Torres Strait Islander Adult Health Check (AHC), results in better identification of elevated CVD risk, improved delivery of preventive care for CVD and improvements in the CVD risk profile for Aboriginal adults in a remote community.
Interrupted time series study over six years in a remote primary health care (PHC) service involving Aboriginal adults identified with elevated CVD risk (N = 64). Several process and outcome measures were audited at 6 monthly intervals for three years prior to the AHC (the intervention) and three years following: (i) the proportion of guideline scheduled CVD preventive care services delivered, (ii) mean CVD medications prescribed and dispensed, (iii) mean PHC consultations, (iv) changes in participants' CVD risk factors and estimated absolute CVD risk and (v) mean number of CVD events and iatrogenic events.
Twenty-five percent of AHC participants were identified as having elevated CVD risk. Of these, 84% had not been previously identified during routine care. Following the intervention, there were significant improvements in the recorded delivery of preventive care services for CVD (30% to 53%), and prescription of CVD related medications (28% to 89%) (P < 0.001). Amongst participants there was a 20% relative reduction in estimated absolute CVD risk (P = 0.004) following the intervention. However, there were no significant changes in the mean number of PHC consultations or mean number of CVD events or iatrogenic events.
Holistic CVD risk assessment during an AHC can lead to better and earlier identification of elevated CVD risk, improvement in the recorded delivery of preventive care services for CVD, intensification of treatment for CVD, and improvements in participants' CVD risk profile. Further research is required on strategies to reorient and restructure PHC services to the care of chronic illness for Aboriginal peoples in remote areas for there to be substantial progress in decreasing excess CVD related mortality.
PMCID: PMC3045287  PMID: 21281520
20.  Evidence for low high-density lipoprotein cholesterol levels in Australian indigenous peoples: a systematic review 
BMC Public Health  2014;14:545.
Low plasma high-density lipoprotein cholesterol (HDL-C) levels are a strong, independent, but poorly understood risk factor for cardiovascular disease (CVD). Although this atherogenic lipid abnormality has been widely reported in Australia’s Indigenous peoples, Aboriginal and Torres Strait Islanders, the evidence has not come under systematic review. This review therefore examines published data for Indigenous Australians reporting 1) mean HDL-C levels for both sexes and 2) factors associated with low HDL-C.
PubMed, Medline and Informit ATSI Health databases were systematically searched between 1950 and 2012 for studies on Indigenous Australians reporting mean HDL-C levels in both sexes. Retrieved studies were evaluated by standard criteria. Low HDL-C was defined as: <1.0 mmol/L. Analyses of primary data associating measures of HDL-C with other CVD risk factors were also performed.
Fifteen of 93 retrieved studies were identified for inclusion. These provided 58 mean HDL-C levels; 29 for each sex, most obtained in rural/regional (20%) or remote settings (60%) and including 51–1641 participants. For Australian Aborigines, mean HDL-C values ranged between 0.81-1.50 mmol/L in females and 0.76-1.60 mmol/L in males. Two of 15 studies reported HDL-C levels for Torres Strait Islander populations, mean HDL-C: 1.00 or 1.11 mmol/L for females and 1.01 or 1.13 mmol/L for males. Low HDL-C was observed only in rural/regional and remote settings - not in national or urban studies (n = 3) in either gender. Diabetes prevalence, mean/median waist-to-hip ratio and circulating C-reactive protein levels were negatively associated with HDL-C levels (all P < 0.05). Thirty-four per cent of studies reported lower mean HDL-C levels in females than in males.
Very low mean HDL-C levels are common in Australian Indigenous populations living in rural and remote communities. Inverse associations between HDL-C and central obesity, diabetes prevalence and inflammatory markers suggest a particularly adverse CVD risk factor profile. An absence of sex dichotomy in HDL-C levels warrants further investigation.
PMCID: PMC4067101  PMID: 24888391
Indigenous; Australian Aborigines; Torres Strait Islanders; Lipids; Dyslipidaemia; High-density lipoprotein cholesterol; Cardiovascular disease; Cardiovascular disease risk factors; Cardiometabolic; Non-communicable disease
21.  Quality improvement in practice: improving diabetes care and patient outcomes in Aboriginal Community Controlled Health Services 
Management of chronic disease, including diabetes, is a central focus of most Aboriginal Community Controlled Health Services (ACCHSs) in Australia. We have previously demonstrated that diabetes monitoring and outcomes can be improved and maintained over a 10-year period at Derby Aboriginal Health Service (DAHS). While continuous quality improvement (CQI) has been shown to improve service delivery rates and clinical outcome measures, the process of interpreting audit results and developing strategies for improvement is less well described. This paper describes the evaluation of care of patients with type 2 diabetes mellitus (T2DM) and features of effective CQI in ACCHSs in the remote Kimberley region of north Western Australia.
Retrospective audit of records for Aboriginal and Torres Strait Islander primary care patients aged ≥15 years with a confirmed diagnosis of T2DM at four Kimberley ACCHSs from 1 July 2011 to 30 June 2012. Interviews with health service staff and focus group discussions with patients post audit. Main outcome measures: diabetes care related activities, clinical outcome measures and factors influencing good diabetes related care and effective CQI.
A total of 348 patients from the four ACCHSs were included in the study. Clinical care activities were generally high across three of the four health services (at least 71% of patients had cholesterol recorded, 89% blood pressure, 84% HbA1c). Patients from DAHS had lower median cholesterol levels (4.4 mmol/L) and the highest proportion of patients meeting clinical targets for HbA1c (31% v 16% ACCHS-3; P = 0.02). Features that facilitated good care included clearly defined staff roles for diabetes management, support and involvement of Aboriginal Health Workers, efficient recall systems, and well-coordinated allied health services. Effective CQI features included seamless and timely data collection, local ownership of the process, openness to admitting deficiencies and willingness to embrace change.
Well-designed health care delivery and CQI systems, with a strong sense of ownership over diabetes management led to increased service delivery rates and improved clinical outcome measures in ACCHSs. Locally run CQI processes may be more responsive to individual health services and more sustainable than externally driven systems.
PMCID: PMC4282197  PMID: 25288282
Indigenous; Aboriginal; Torres Strait Islander; Diabetes; Quality improvement cycles; Primary health care
22.  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.
PMCID: PMC2203968  PMID: 18001479
23.  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.
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.
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.
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.
PMCID: PMC1373687  PMID: 16417641
24.  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 
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.
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.
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.
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.
PMCID: PMC3681658  PMID: 23738766
Diabetes mellitus; Type 2; Depression; Quality improvement; Indigenous health services
25.  “Makes you proud to be black eh?”: Reflections on meaningful Indigenous research participation 
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.
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.
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.
PMCID: PMC3439313  PMID: 22873769
Indigenous; Participatory action research; Aboriginal; Torres Strait Islander; Participation

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