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Increasingly, the role of health research in improving the discrepancies in health outcomes between Indigenous and non-Indigenous populations in developed countries is being recognised. Along with this comes the recognition that health research must be conducted in a manner that is culturally appropriate and ethically sound. Two key documents have been produced in Australia, known as The Road Map and The Guidelines, to provide theoretical and philosophical direction to the ethics of Indigenous health research. These documents identify research themes considered critical to improving the health of the nation's Indigenous peoples. They also provide values that, from an Indigenous perspective, are foundational to an ethical research process. This paper examines these research themes and values within the context of a current longitudinal birth cohort study of Indigenous infants and children in south-west Sydney: the Gudaga Study. Considerable time and effort have been invested in being true to the values stated in these documents: reciprocity; respect; equality; responsibility; survival and protection; and spirit and integrity. We have learnt that it is vital to be true to these values when conducting Indigenous health research--to quite literally 'walk the talk'. [ABSTRACT FROM AUTHOR]

Background: Aboriginal people are under-reported on administrative health data in Australia. Various approaches have been used or proposed to improve reporting of Aboriginal people using linked records. This cross-sectional study used self-reported Aboriginality from the NSW Patient Survey Program (PSP) as a reference standard to assess the accuracy of reporting of Aboriginal people on NSW Admitted Patient (APDC) and Emergency Department Data Collections (EDDC), and compare the accuracy of selected approaches to enhance reporting Aboriginality using linked data., Methods: Ten PSP surveys were linked to five administrative health data collections, including APDC, EDDC, perinatal, and birth and death registration records. Accuracy of reporting of Aboriginality was assessed using sensitivity, specificity, and positive and negative predictive values (PPVs and NPVs) and F score for the EDDC and APDC as baseline and four enhancement approaches using linked records: "Most recent linked record", "Ever reported as Aboriginal", and two approaches using a weight of evidence, "Enhanced Reporting of Aboriginality (ERA) algorithm" and "Multi-stage median (MSM)"., Results: There was substantial under-reporting of Aboriginality on APDC and EDDC records (sensitivities 84 and 77% respectively) with PPVs of 95% on both data collections. Overall, specificities and NPVs were above 98%. Of people who were reported as Aboriginal on the PSP, 16% were not reported as Aboriginal on any of their linked records. Record linkage approaches generally increased sensitivity, accompanied by decrease in PPV with little change in overall F score for the APDC and an increase in F score for the EDDC. The "ERA algorithm" and "MSM" approaches provided the best overall accuracy., Conclusions: Weight of evidence approaches are preferred when record linkage is used to improve reporting of Aboriginality on administrative health data collections. However, as a substantial number of Aboriginal people are not reported as Aboriginal on any of their linked records, improvements in reporting are incomplete and should be taken into account when interpreting results of any analyses. Enhancement of reporting of Aboriginality using record linkage should not replace efforts to improve recording of Aboriginal people at the point of data collection and addressing barriers to self-identification for Aboriginal people.

Background: Eclampsia is a serious consequence of pre-eclampsia. There are limited data from Australia and New Zealand (ANZ) on eclampsia., Aim: To determine the incidence, management and perinatal outcomes of women with eclampsia in ANZ., Materials and Methods: A two-year population-based descriptive study, using the Australasian Maternity Outcomes Surveillance System (AMOSS), carried out in 263 sites in Australia, and all 24 New Zealand maternity units, during a staggered implementation over 2010-2011. Eclampsia was defined as one or more seizures during pregnancy or postpartum (up to 14 days) in any woman with clinical evidence of pre-eclampsia., Results: Of 136 women with eclampsia, 111 (83%) were in Australia and 25 (17%) in New Zealand. The estimated incidence of eclampsia was 2.2 (95% confidence interval (CI) 1.9-2.7) per 10 000 women giving birth. Aboriginal and Torres Strait Islander women were over-represented in Australia (n = 9; 8.1%). Women with antepartum eclampsia (n = 58, 42.6%) were more likely to have a preterm birth (P = 0.04). Sixty-three (47.4%) women had pre-eclampsia diagnosed prior to their first eclamptic seizure of whom 19 (30.2%) received magnesium sulphate prior to the first seizure. Nearly all women (n = 128; 95.5%) received magnesium sulphate post-seizure. No woman received prophylactic aspirin during pregnancy. Five women had a cerebrovascular haemorrhage, and there were five known perinatal deaths., Conclusions: Eclampsia is an uncommon consequence of pre-eclampsia in ANZ. There is scope to reduce the incidence of this condition, associated with often catastrophic morbidity, through the use of low-dose aspirin and magnesium sulphate in women at higher risk., (© 2019 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)

Objective: To describe the epidemiology of rheumatic heart disease (RHD) in pregnancy in Australia and New Zealand (A&NZ)., Design: Prospective population-based study., Setting: Hospital-based maternity units throughout A&NZ., Population: Pregnant women with RHD with a birth outcome of ≥20 weeks of gestation between January 2013 and December 2014., Methods: We identified eligible women using the Australasian Maternity Outcomes Surveillance System (AMOSS). De-identified antenatal, perinatal and postnatal data were collected and analysed., Main Outcome Measures: Prevalence of RHD in pregnancy. Perinatal morbidity and mortality., Results: There were 311 pregnancies associated with women with RHD (4.3/10 000 women giving birth, 95% CI 3.9-4.8). In Australia, 78% were Aboriginal or Torres Strait Islander (60.4/10 000, 95% CI 50.7-70.0), while in New Zealand 90% were Māori or Pasifika (27.2/10 000, 95% CI 22.0-32.3). One woman (0.3%) died and one in ten was admitted to coronary or intensive care units postpartum. There were 314 births with seven stillbirths (22.3/1000 births) and two neonatal deaths (6.5/1000 births). Sixty-six (21%) live-born babies were preterm and one in three was admitted to neonatal intensive care or special care units., Conclusion: Rheumatic heart disease in pregnancy persists in disadvantaged First Nations populations in A&NZ. It is associated with significant cardiac and perinatal morbidity. Preconception planning and counselling and RHD screening in at-risk pregnant women are essential for good maternal and baby outcomes., Tweetable Abstract: Rheumatic heart disease in pregnancy persists in First Nations people in Australia and New Zealand and is associated with major cardiac and perinatal morbidity., (© 2019 Royal College of Obstetricians and Gynaecologists.)

Background: The global burden of rheumatic heart disease (RHD) is two-to-four times higher in women, with a heightened risk in pregnancy. In Australia, RHD is found predominantly among Aboriginal and Torres Strait Islander peoples., Methods: This paper reviews processes developed to identify pregnant Australian women with RHD during a 2-year population-based study using the Australasian Maternity Outcomes Surveillance System (AMOSS). It evaluates strategies developed to enhance reporting and discusses implications for patient care and public health., Results: AMOSS maternity coordinators across 262 Australian sites reported cases. An extended network across cardiac, Aboriginal and primary healthcare strengthened surveillance and awareness. The network notified 495 potential cases, of which 192 were confirmed. Seventy-eight per cent were Aboriginal and/or Torres Strait Islander women, with a prevalence of 22 per 1000 in the Northern Territory., Discussion: Effective surveillance was challenged by a lack of diagnostic certainty, incompatible health information systems and varying clinical awareness among health professionals. Optimal outcomes for pregnant women with RHD demand timely diagnosis and access to collaborative care., Conclusion: The strategies employed by this study highlight gaps in reporting processes and the opportunity pregnancy provides for diagnosis and re/engagement with health services to support better continuity of care and promote improved outcomes.

Background: In Australia there is commitment to developing interventions that will 'Close the Gap' between the health and welfare of Indigenous and non-Indigenous Australians and recognition that early childhood interventions offer the greatest potential for long term change. Nurse led sustained home visiting programs are considered an effective way to deliver a health and parenting service, however there is little international or Australian evidence that demonstrates the effectiveness of these programs for Aboriginal infants. This protocol describes the Bulundidi Gudaga Study, a quasi-experimental design, comparing three cohorts of families from the Macarthur region in south western Sydney to explore the effectiveness of the Maternal Early Childhood Sustained Home-visiting (MECSH) program for Aboriginal families., Methods: Mothers were recruited when booking into the local hospital for perinatal care and families are followed up until child is age 4 years. Participants are from three distinct cohorts: Aboriginal MECSH intervention cohort (Group A), Non-Aboriginal MECSH intervention cohort (Group B) and Aboriginal non-intervention cohort (Group C). Eligible mothers were those identified as at risk during the Safe Start assessment conducted by antenatal clinic midwives. Mothers in Group A were eligible if they were pregnant with an Aboriginal infant. Mothers in Group B were eligible if they were pregnant with a non-Aboriginal infant. Mothers in Group C are part of the Gudaga descriptive cohort study and were recruited between October 2005 and May 2007. The difference in duration of breastfeeding, child body mass index, and child development outcomes at 18 months and 4 years of age will be measured as primary outcomes. We will also evaluate the intervention effect on secondary measures including: child dental health; the way the program is received; patterns of child health and illness; patterns of maternal health, health knowledge and behaviours; family and environmental conditions; and service usage for mothers and families., Discussion: Involving local Aboriginal research and intervention staff and investing in established relationships between the research team and the local Aboriginal community is enabling this study to generate evidence regarding the effectiveness of interventions that are feasible to implement and sustainable in the context of Aboriginal communities and local service systems., Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12616001721493 Registered 14 Dec 2016. Retrospectively registered.

Objectives: To study rheumatic heart disease health literacy and its impact on pregnancy, and to identify how health services could more effectively meet the needs of pregnant women with rheumatic heart disease., Materials and Methods: Researchers observed and interviewed a small number of Aboriginal women and their families during pregnancy, childbirth and postpartum as they interacted with the health system. An Aboriginal Yarning method of relationship building over time, participant observations and interviews with Aboriginal women were used in the study. The settings were urban, island and remote communities across the Northern Territory. Women were followed interstate if they were transferred during pregnancy. The participants were pregnant women and their families. We relied on participants' abilities to tell their own experiences so that researchers could interpret their understanding and perspective of rheumatic heart disease., Results: Aboriginal women and their families rarely had rheumatic heart disease explained appropriately by health staff and therefore lacked understanding of the severity of their illness and its implications for childbearing. Health directives in written and spoken English with assumed biomedical knowledge were confusing and of limited use when delivered without interpreters or culturally appropriate health supports., Conclusions: Despite previous studies documenting poor communication and culturally inadequate care, health systems did not meet the needs of pregnant Aboriginal women with rheumatic heart disease. Language-appropriate health education that promotes a shared understanding should be relevant to the gender, life-stage and social context of women with rheumatic heart disease., (© 2017 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)

Background: Indigenous peoples experience worse health and die at younger ages than their non-indigenous counterparts. Ethnicity data enables health services to identify inequalities experienced by minority populations and to implement and monitor services specifically targeting them. Despite significant Government intervention, Australia's Indigenous peoples, the Aboriginal and Torres Strait Islander peoples, continue to be under identified in data sets. We explored the barriers to Indigenous status identification in urban general practice in two areas in Sydney., Methods: A mixed-methods multiple-site case study was used, set in urban general practice. Data collection included semi-structured interviews and self-complete questionnaires with 31 general practice staff and practitioners, interviews with three Medicare Local staff, and focus groups with the two local Aboriginal and Torres Strait Islander communities in the study areas. These data were combined with clinical record audit data and Aboriginal unannounced standardised patient visits to participating practices to determine the current barriers to Indigenous status identification in urban general practice., Results: Findings can be broadly grouped into three themes: a lack of practitioner/staff understanding on the need to identify Indigenous status or that a problem with identification exists; suboptimal practice systems to identify and/or record patients' Indigenous status; and practice environments that do not promote Indigenous status identification., Conclusion: Aboriginal and Torres Strait Islander peoples remain under-identified in general practice. There is a need to address the lack of practitioner and staff recognition that a problem with Indigenous status identification exists, along with entrenched attitudes and beliefs and limitations to practice software capabilities. Guidelines recommending Indigenous status identification and Aboriginal and Torres Strait Islander-specific Practice Incentive Payments have had limited impact on Indigenous status identification rates. It is likely that policy change mandating Indigenous status identification and recording in general practice will also be required.

Objective: To evaluate the first three years of a national program to improve the social and emotional wellbeing of Indigenous youth in remote and regional Australia., Methods: Combination of open inquiry and audit review involving investigation of process and outcomes, with a broad national overview supplemented by five in-depth case studies in diverse settings., Results: Community development principles were applied at all 14 sites. There were many examples of collaborative, community-driven health promotion initiatives, with most progress observed where there were strong local partnerships. Within the range of activities, education sessions on alcohol and other drugs, mental health and violence were facilitated by program staff. There was a tension between community development and specific program delivery, with the balance reflecting the needs and capacity of individual sites, program staff expertise and contractual requirements., Conclusions and Implications: The main lessons concern program design and resourcing and ways of working. Program staff at each site learned to be not too ambitious, but to work consistently with the community, establishing partnerships and engaging and training community members. Community and stakeholder capacity enhancement should be regarded as core, and evaluation built in. Activities directed at youth must be engaging and effective, and integrated with other programs and services., (© 2015 The Authors.)

Background: Super-obesity is associated with significantly elevated rates of obstetric complications, adverse perinatal outcomes and interventions. The purpose of this study was to determine the prevalence, risk factors, management and perinatal outcomes of super-obese women giving birth in Australia., Methods: A national population-based cohort study. Super-obese pregnant women (body mass index (BMI) >50 kg/m(2) or weight >140 kg) who gave birth between January 1 and October 31, 2010 and a comparison cohort were identified using the Australasian Maternity Outcomes Surveillance System (AMOSS). Outcomes included maternal and perinatal morbidity and mortality. Prevalence estimates calculated with 95% confidence intervals (CIs). Adjusted odds ratios (ORs) were calculated using multivariable logistic regression., Results: 370 super-obese women with a median BMI of 52.8 kg/m(2) (range 40.9-79.9 kg/m(2)) and prevalence of 2.1 per 1 000 women giving birth (95% CI: 1.96-2.40). Super-obese women were significantly more likely to be public patients (96.2%), smoke (23.8%) and be socio-economically disadvantaged (36.2%). Compared with other women, super-obese women had a significantly higher risk for obstetric (adjusted odds ratio (AOR) 2.42, 95% CI: 1.77-3.29) and medical (AOR: 2.89, 95% CI: 2.64-4.11) complications during pregnancy, birth by caesarean section (51.6%) and admission to special care (HDU/ICU) (6.2%). The 372 babies born to 365 super-obese women with outcomes known had significantly higher rates of birthweight ≥ 4500 g (AOR 19.94, 95 % CI: 6.81-58.36), hospital transfer (AOR 3.81, 95 % CI: 1.93-7.55) and admission to Neonatal Intensive Care Unit (NICU) (AOR 1.83, 95% CI: 1.27-2.65) compared to babies of the comparison group, but not prematurity (10.5% versus 9.2%) or perinatal mortality (11.0 (95% CI: 4.3-28.0) versus 6.6 (95% CI: 2.6- 16.8) per 1 000 singleton births)., Conclusions: Super-obesity in pregnancy in Australia is associated with increased rates of pregnancy and birth complications, and with social disadvantage. There is an urgent need to further address risk factors leading to super-obesity among pregnant women and for maternity services to better address pre-pregnancy and pregnancy care to reduce associated inequalities in perinatal outcomes.

Objective: A mixed methods study was conducted to determine the views of Aboriginal people on their experiences of a brokerage model for access to community-based health services in an urban setting., Methods: A broad range of approaches, using surveys, semi-structured interviews and community forums with Aboriginal people were used to find out people's views and experiences of using the brokerage service., Results: Of the 1304 people invited to participate, only 127 people provided feedback on the brokerage service model for Aboriginal people. Of these, 120 people identified as being Aboriginal. Participants said that the service helped them to navigate the system and access health care. Participants felt that the health professionals involved with the service were respectful of their needs. The service was not able to improve access to dental care., Conclusions: The brokerage model implemented in this area appears to have been well received and is supporting urban Aboriginal people to access some of the health care needed.

Background: Dementia is an emerging health priority in Australian Aboriginal communities, but substantial gaps remain in our understanding of this issue, particularly for the large urban section of the population. In remote Aboriginal communities, high prevalence rates of dementia at relatively young ages have been reported. The current study is investigating aging, cognitive decline, and dementia in older urban/regional Aboriginal Australians., Methods: We partnered with five Aboriginal communities across the eastern Australian state of New South Wales, to undertake a census of all Aboriginal men and women aged 60 years and over residing in these communities. This was followed by a survey of the health, well-being, and life history of all consenting participants. Participants were also screened using three cognitive instruments. Those scoring below designated cut-offs, and a 20% random sample of those scoring above (i.e. "normal" range), completed a contact person interview (with a nominated family member) and medical assessment (blind to initial screening results), which formed the basis of "gold standard" clinical consensus determinations of cognitive impairment and dementia., Conclusion: This paper details our protocol for a population-based study in collaboration with local Aboriginal community organizations. The study will provide the first available prevalence rates for dementia and cognitive impairment in a representative sample of urban Aboriginal people, across city and rural communities, where the majority of Aboriginal Australians live. It will also contribute to improved assessment of dementia and cognitive impairment and to the understanding of social determinants of successful aging, of international significance.

Background: The Australasian Maternity Outcomes Surveillance System (AMOSS) conducts active, prospective surveillance of severe maternal conditions in Australia and New Zealand (ANZ). AMOSS captures greater than 96% of all births, and utilises an online, active case-based negative reporting system., Aim: To evaluate AMOSS using the United States Centres for Disease Control (MMWR 2001; 50 (RR13): 1-35.) surveillance system evaluation framework., Methods: Data were gathered using multiple methods, including an anonymous online survey administered to 353 AMOSS data collectors, in addition to review of case data received during 2009-2011, documented records of project board and advisory group meeting minutes, publications, annual reports and the AMOSS database., Results: AMOSS is a research system characterised by its simplicity and efficiency. The socio-demographic, risk factor and severe morbidity clinical data collected on rare conditions are not duplicated in other routine data systems. AMOSS is functioning well and has sustained buy-in from clinicians, stakeholders and consumers and a high level of acceptability to data collectors in ANZ maternity units., Conclusions: AMOSS is the only existing national system of surveillance for rare and severe maternal conditions in ANZ and therefore serves an important function, utilising data collected from reliable sources, in an effective, efficient and timely way., (© 2012 The Authors ANZJOG © 2012 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)