Indigenous data governance approaches applied in research using routinely collected health data: a scoping review.

Globally, there is a growing acknowledgment of Indigenous Peoples' rights to control data related to their communities. This is seen in the development of Indigenous Data Governance standards. As health data collection increases, it's crucial to apply these standards in research involving Indigenous communities.

Breaking the cycle: Effect of a multi-agency maternity service redesign on reducing the over-representation of Aboriginal and Torres Strait Islander newborns in out-of-home care: A prospective, non-randomised, intervention study in urban Australia.

Background: Strategies to reduce over-representation of Indigenous children in out-of-home care must start in pregnancy given Indigenous babies are 6 % of infants (<1 year), yet 43 % of infants in out-of-home care.

Objective: To determine if an Indigenous-led, multi-agency, partnership redesign of maternity services decreases the likelihood of babies being removed at birth.

Participants And Setting: Women carrying an Indigenous baby/babies who gave birth at the Mater Mothers' Public Hospital, Brisbane (2013-2019).

Enabling the context for Aboriginal and Torres Strait Islander Community Controlled Birthing on Country services: Participatory action research.

Problem: Establishment of Birthing on Country services owned and governed by Aboriginal and Torres Strait Islander Community Controlled Health Services has been slow.

Background: Birthing on Country services have demonstrated health and cost benefits and require redesign of maternity care. During the Building On Our Strengths feasibility study, use of endorsed midwives and licensing of birth centres has proven difficult.

Birthing on country service compared to standard care for First Nations Australians: a cost-effectiveness analysis from a health system perspective.

Background: Preterm birth is the leading cause of morbidity and mortality for children under five years with First Nations babies experiencing twice the rate of other Australians. The Birthing in Our Community (BiOC) service was implemented in a metropolitan centre in Australia and showed a significant reduction in preterm birth. We aimed to assess the cost-effectiveness of the BiOC service in reducing preterm births compared to Standard Care, from a health system perspective.

Developing and evaluating Birthing on Country services for First Nations Australians: the Building On Our Strengths (BOOSt) prospective mixed methods birth cohort study protocol.

Background: With the impact of over two centuries of colonisation in Australia, First Nations families experience a disproportionate burden of adverse pregnancy and birthing outcomes. First Nations mothers are 3-5 times more likely than other mothers to experience maternal mortality; babies are 2-3 times more likely to be born preterm, low birth weight or not to survive their first year. 'Birthing on Country' incorporates a multiplicity of interpretations but conveys a resumption of maternity services in First Nations Communities with Community governance for the best start to life.

Indigenous Australians' Experiences of Cancer Care: A Narrative Literature Review.

To provide the latest evidence for future research and practice, this study critically reviewed Indigenous peoples' cancer care experiences in the Australian healthcare system from the patient's point of view. After searching PubMed, CINAHL and Scopus databases, twenty-three qualitative studies were included in this review. The inductive approach was used for analysing qualitative data on cancer care experience in primary, tertiary and transitional care between systems.

Study protocol: primary healthcare transformation through patient-centred medical homes-improving access, relational care and outcomes in an urban Aboriginal and Torres Strait Islander population, a mixed methods prospective cohort study.

Introduction: For over 40 years, Aboriginal and Torres Strait Islander Community-Controlled Health Services (ACCHS) in Australia have led strategic responses to address the specific needs of Aboriginal and Torres Strait Islander populations. Globally, there has been rapid growth in urban Indigenous populations requiring an adaptive primary healthcare response. Patient-centred medical homes (PCMH) are an evidenced-based model of primary healthcare suited to this challenge, underpinned by principles aligned with the ACCHS sector-relational care responsive to patient identified healthcare priorities.

Improving interagency service integration of the Australian Nurse Family Partnership Program for First Nations women and babies: a qualitative study.

Background: The Australian Nurse Family Partnership Program (ANFPP) is an evidence-based, home visiting program that offers health education, guidance, social and emotional support to first-time mothers having Aboriginal and/or Torres Strait Islander (First Nations) babies. The community-controlled sector identified the need for specialised support for first time mothers due to the inequalities in birthing and early childhood outcomes between First Nations' and other babies in Australia. The program is based on the United States' Nurse Family Partnership program which has improved long-term health outcomes and life trajectories for mothers and children.

A call for action that cannot go to voicemail: Research activism to urgently improve Indigenous perinatal health and wellbeing.

In this call to action, a coalition of Indigenous and non-Indigenous researchers from Australia, Aotearoa New Zealand, United States and Canada argue for the urgent need for adequately funded Indigenous-led solutions to perinatal health inequities for Indigenous families in well-resourced settler-colonial countries. Authors describe examples of successful community-driven programs making a difference and call on all peoples to support and resource Indigenous-led perinatal health services by providing practical actions for individuals and different groups.

Effect of a Birthing on Country service redesign on maternal and neonatal health outcomes for First Nations Australians: a prospective, non-randomised, interventional trial.

Background: There is an urgency to redress unacceptable maternal and infant health outcomes for First Nations families in Australia. A multi-agency partnership between two Aboriginal Community-controlled health services and a tertiary hospital in urban Australia designed, implemented, and evaluated the new Birthing in Our Community (BiOC) service. In this study, we aimed to assess and report the clinical effectiveness of the BiOC service on key maternal and infant health outcomes compared with that of standard care.

Building a regional health ecosystem: a case study of the Institute for Urban Indigenous Health and its System of Care.

Efforts to address Indigenous health disadvantage require a refocus on urban settings, where a rapidly increasing majority (79%) of Indigenous Australians live. Proximity to mainstream primary care has not translated into health equity, with the majority of the Indigenous burden of disease (73%) remaining in urban areas and urban Indigenous people continuing to face significant barriers in accessing comprehensive and culturally appropriate care. This paper presents a case study of how the Institute for Urban Indigenous Health (IUIH) has strategically responded to these challenges in South East Queensland - home to Australia's largest and equal fastest growing Indigenous population.

Reducing preterm birth amongst Aboriginal and Torres Strait Islander babies: A prospective cohort study, Brisbane, Australia.

Background: Prevention of avoidable preterm birth in Aboriginal and Torres Strait Islander (Indigenous) families is a major public health priority in Australia. Evidence about effective, scalable strategies to improve maternal and infant outcomes is urgently needed. In 2013, a multiagency partnership between two Aboriginal Community Controlled Health Organisations and a tertiary maternity hospital co-designed a new service aimed at reducing preterm birth: 'Birthing in Our Community'.

Implementing Birthing on Country services for Aboriginal and Torres Strait Islander families: RISE Framework.

Background: Birthing on Country is an international movement to return maternity services to First Nations communities and community control for improved health and wellbeing.

Question: How can we implement Birthing on Country services for Aboriginal and/or Torres Strait Islander families across Australia?

Methods: We have developed a framework from theoretical, policy and research literature on Birthing on Country; Aboriginal and Torres Strait Islander voices from across Australia; reviews exploring programs that have improved outcomes for Indigenous mothers and infants; and the retrospective synthesis of learnings from two empirical studies that have redesigned maternal infant health services and improved outcomes for Aboriginal and Torres Strait Islander families.

Results: The RISE Framework has four pillars to drive important reform: (1) Redesign the health service; (2) Invest in the workforce; (3) Strengthen families; and, (4) Embed Aboriginal and/or Torres Strait Islander community governance and control.

The Indigenous Birthing in an Urban Setting study: the IBUS study : A prospective birth cohort study comparing different models of care for women having Aboriginal and Torres Strait Islander babies at two major maternity hospitals in urban South East Queensland, Australia.

Background: With persisting maternal and infant health disparities, new models of maternity care are needed to meet the needs of Aboriginal and Torres Strait Islander people in Australia. To date, there is limited evidence of successful and sustainable programs. Birthing on Country is a term used to describe an emerging evidence-based and community-led model of maternity care for Indigenous families; its impact requires evaluation.

Birthing on Country (in Our Community): a case study of engaging stakeholders and developing a best-practice Indigenous maternity service in an urban setting.

Developing high-quality and culturally responsive maternal and infant health services is a critical part of 'closing the gap' in health disparities between Aboriginal and Torres Strait Islander people and other Australians. The National Maternity Services Plan led work that describes and recommends Birthing on Country best-practice maternity care adaptable from urban to very remote settings, yet few examples exist in Australia. This paper demonstrates Birthing on Country principles can be applied in the urban setting, presenting our experience establishing and developing a Birthing on Country partnership service model in Brisbane, Australia.

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.

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.

Quality indicators of diabetes care: an example of remote-area Aboriginal primary health care over 10 years.

Objectives: To describe service characteristics of Derby Aboriginal Health Service (DAHS) and document diabetes management activities and intermediate clinical outcomes for Aboriginal patients with type 2 diabetes.

Design, Setting And Patients: Retrospective audit of records for patients ≥ 15 years old who had a confirmed diagnosis of type 2 diabetes, received primary health care from DAHS for at least 6 continuous months between 1 July 1999 and 30 June 2009, resided in the Derby area and were not on renal replacement therapy.

Main Outcome Measures: Electronic records of blood pressure (BP), glycated haemoglobin (HbA(1c)) level, weight, albumin-creatinine ratio, creatinine level or estimated glomerular filtration rate, lipid levels and smoking status during each audit year; and proportions of patients who met clinical targets for HbA(1c), BP and cholesterol.

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.

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.

Haemodialysis outcomes of Aboriginal and Torres Strait Islander patients of remote Kimberley region origin.

Objectives: To compare the clinical outcomes and mortality rates of Aboriginal and Torres Strait Islander people of Kimberley origin receiving haemodialysis (HD) treatment with other subsets of Aboriginal and Torres Strait Islander HD patients (Northern Territory, Western Australia excluding the Kimberley region, the rest of Australia) and Australian non-Indigenous HD patients.

Design, Participants And Setting: Retrospective identification of Aboriginal and Torres Strait Islander patients of Kimberley origin and analysis of secondary data from the Australia and New Zealand Dialysis and Transplant Registry; this group was compared with other Australian patients receiving HD treatment from 1 January 2003 to 31 December 2007.

Main Outcome Measures: Clinical outcome measures; comorbid conditions; death rates per 100 patient-years, unadjusted and adjusted (for age, sex, comorbid conditions, late referral to nephrologist treatment).

Point-of-care testing of capillary glucose in the exclusion and diagnosis of diabetes in remote Australia.

Objectives: To determine the utility of point-of-care (POC) capillary blood glucose measurements in the diagnosis and exclusion of diabetes in usual practice in primary health care in remote areas.

Design: Cross-sectional study comparing POC capillary glucose results with corresponding venous glucose levels measured in a reference laboratory.

Participants: 200 participants aged 16-65 years enrolled: 198 had POC capillary glucose measurements; 164 also had acceptable venous glucose laboratory results.