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Abstract Background In the context of expanding digital health tools, the health system is ready for Learning Health System (LHS) models. These models, with proper governance and stakeholder engagement, enable the integration of digital infrastructure to provide feedback to all relevant parties including clinicians and consumers on performance against best practice standards, as well as fostering innovation and aligning healthcare with patient needs. The LHS literature primarily includes opinion or consensus-based frameworks and lacks validation or evidence of benefit. Our aim was to outline a rigorously codesigned, evidence-based LHS framework and present a national case study of an LHS-aligned national stroke program that has delivered clinical benefit. Main text Current core components of a LHS involve capturing evidence from communities and stakeholders (quadrant 1), integrating evidence from research findings (quadrant 2), leveraging evidence from data and practice (quadrant 3), and generating evidence from implementation (quadrant 4) for iterative system-level improvement. The Australian Stroke program was selected as the case study as it provides an exemplar of how an iterative LHS works in practice at a national level encompassing and integrating evidence from all four LHS quadrants. Using this case study, we demonstrate how to apply evidence-based processes to healthcare improvement and embed real-world research for optimising healthcare improvement. We emphasize the transition from research as an endpoint, to research as an enabler and a solution for impact in healthcare improvement. Conclusions The Australian Stroke program has nationally improved stroke care since 2007, showcasing the value of integrated LHS-aligned approaches for tangible impact on outcomes. This LHS case study is a practical example for other health conditions and settings to follow suit.

Abstract Background Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have access to appropriate support, yet services are often limited. Internet-based programs may provide another option of psychosocial support for parents following the death of a baby. We aim to evaluate the efficacy and acceptability of a self-guided internet-based perinatal bereavement support program “Living with Loss” (LWL) in reducing psychological distress and improving the wellbeing of parents following stillbirth or neonatal death. Methods This trial is a two-arm parallel group randomized controlled trial comparing the intervention arm (LWL) with a care as usual control arm (CAU). We anticipate recruiting 150 women and men across Australia who have experienced a stillbirth or neonatal death in the past 2 years. Participants randomized to the LWL group will receive the six-module internet-based program over 8 weeks including automated email notifications and reminders. Baseline, post-intervention, and 3-month follow-up assessments will be conducted to assess primary and secondary outcomes for both arms. The primary outcome will be the change in Kessler Psychological Distress Scale (K10) scores from baseline to 3-month follow-up. Secondary outcomes include perinatal grief, anxiety, depression, quality of life, program satisfaction and acceptability, and cost-effectiveness. Analysis will use intention-to-treat linear mixed models to examine psychological distress symptom scores at 3-month follow-up. Subgroup analyses by severity of symptoms at baseline will be undertaken. Discussion The LWL program aims to provide an evidence-based accessible and flexible support option for bereaved parents following stillbirth or neonatal death. This may be particularly useful for parents and healthcare professionals residing in rural regions where services and supports are limited. This RCT seeks to provide evidence of the efficacy, acceptability, and cost-effectiveness of the LWL program and contribute to our understanding of the role digital services may play in addressing the gap in the availability of specific bereavement support resources for parents following the death of a baby, particularly for men. Trial registration Australian New Zealand Clinical Trials Registry, ACTRN12621000631808 . Registered prospectively on 27 May 2021.

Abstract Background In maternity services, as in other areas of healthcare, increasing emphasis is placed on improving “efficiency” or “productivity”. The first step in any efficiency and productivity analysis is the selection of relevant input and output measures. Within healthcare quantifying what is produced (outputs) can be difficult. The aim of this paper is to identify a potential output measure, that can be used in an assessment of the efficiency and productivity of labour and birth in-hospital care in Australia and to assess the extent to which it reflects the principles of woman-centred care. Methods This paper will survey available perinatal and maternal datasets in Australia to identify potential output measures; map identified output variables against the principles of woman-centred care outlined in Australia’s national maternity strategy; and based on this, create a preliminary composite outcome measure for use in assessing the efficiency and productivity of Australian maternity services. Results There are significant gaps in Australia’s maternity data collections with regard to measuring how well a maternity service is performing against the values of respect, choice and access; however safety is well measured. Our proposed composite measure identified that of the 63,215 births in Queensland in 2014, 67% met the criteria of quality outlined in our composite measure. Conclusions Adoption in Australia of the collection of woman-reported maternity outcomes would substantially strengthen Australia’s national maternity data collections and provide a more holistic view of pregnancy and childbirth in Australia beyond traditional measure of maternal and neonate morbidity and mortality. Such measures to capture respect, choice and access could complement existing safety measures to inform the assessment of productivity and efficiency in maternity care.

Abstract Background The World Health Organization states there are three interrelated domains that are fundamental to achieving and maintaining universal access to care - raising sufficient funds for health care, reducing financial barriers to access by pooling funds in a way that prevents out-of-pocket costs, and allocating funds in a way that promotes quality, efficiency and equity. In Australia, a comprehensive account of the mechanisms for financing the health system have not been synthesised elsewhere. Therefore, to understand how the maternal health system is financed, this review aims to examine the mechanisms for funding, pooling and purchasing maternal health care and the influence these financing mechanisms have on the delivery of maternal health services in Australia. Methods We conducted a scoping review and interpretative synthesis of the financing mechanisms and their impact on Australia’s maternal health system. Due to the nature of the study question, the review had a major focus on grey literature. The search was undertaken in three stages including; searching (1) Google search engine (2) targeted websites and (3) academic databases. Executive summaries and table of contents were screened for grey literature documents and Titles and Abstracts were screened for journal articles. Screening of publications’ full-text followed. Data relating to either funding, pooling, or purchasing of maternal health care were extracted for synthesis. Results A total of 69 manuscripts were included in the synthesis, with 52 of those from the Google search engine and targeted website (grey literature) search. A total of 17 articles we included in the synthesis from the database search. Conclusion Our study provides a critical review of the mechanisms by which revenues are raised, funds are pooled and their impact on the way health care services are purchased for mothers and babies in Australia. Australia’s maternal health system is financed via both public and private sources, which consequentially creates a two-tiered system. Mothers who can afford private health insurance – typically wealthier, urban and non-First Nations women - therefore receive additional benefits of private care, which further exacerbates inequity between these groups of mothers and babies. The increasing out of pocket costs associated with obstetric care may create a financial burden for women to access necessary care or it may cause them to skip care altogether if the costs are too great.

Abstract Background There is global concern for the overuse of obstetric interventions during labour and birth. Of particular concern is the increasing amount of mothers and babies experiencing morbidity and mortality associated with caesarean section compared to vaginal birth. In high-income settings, emerging evidence suggests that overuse of obstetric intervention is more prevalent among wealthier mothers with no medical need of it. In Australia, the rates of caesarean section and other obstetric interventions are rising. These rising rates of intervention have been mirrored by a decreasing rate of unassisted non-instrumental vaginal deliveries. In the context of rising global concern about rising caesarean section rates and the known health effects of caesarean section on mothers and children, we aim to better characterise the use of obstetric intervention in the state of Queensland, Australia by examining the characteristics of mothers receiving obstetric intervention. Identifying whether there is overuse of obstetric interventions within a population is critical to improving the quality, value and appropriateness of maternity care. Methods The association between demographic characteristics (at birth) and birth delivery type were compared with chi-square. The percentage of mothers based on their socioeconomic characteristics were reported and differences in percentages of obstetric interventions were compared. Multivariate analysis was undertaken using multiple logistic regression to assess the likelihood of receiving obstetric intervention and having a vaginal (non-instrumental) delivery after accounting for key clinical characteristics. Results Indigenous mothers, mothers in major cities and mothers in the wealthiest quintile all had higher percentages of all obstetric interventions and had the lowest percentages of unassisted (non-instrumental) vaginal births. These differences remained even after adjusting for other key sociodemographic and clinical characteristics. Conclusions Differences in obstetric practice exist between economic, ethnic and geographical groups of mothers that are not attributable to medical or lifestyle risk factors. These differences may reflect health system, organisational and structural conditions and therefore, a better understanding of the non-clinical factors that influence the supply and demand of obstetric interventions is required.

Abstract Background Indigenous Australians diagnosed with cancer have poorer survival compared to non-Indigenous Australians. We aim to: 1) identify differences by Indigenous status in out-of-pocket expenditure for the first three-years post-diagnosis; 2) identify differences in the quantity and cost of healthcare services accessed; and 3) estimate the number of additional services required if access was equal between Indigenous and non-Indigenous people with cancer. Methods We used CancerCostMod, a model using linked administrative data. The base population was all persons diagnosed with cancer in Queensland, Australia (01JUL2011 to 30JUN2012) (n = 25,553). Each individual record was then linked to their Admitted Patient Data Collection, Emergency Data Information System, Medicare Benefits Schedule (MBS), and Pharmaceutical Benefits Scheme (PBS) records (01JUL2011 to 30JUN2015). We then weighted the population to be representative of the Australian population (approximately 123,900 Australians, 1.7% Indigenous Australians). The patient co-payment charged for each MBS service and PBS prescription was summed for each month from date of diagnosis to 36-months post-diagnosis. We then limited our model to MBS items to identify the quantity and type of healthcare services accessed during the first three-years. Results On average Indigenous people with cancer had less than half the out-of-pocket expenditure for each 12-month period (0–12 months: mean $401 Indigenous vs $1074 non-Indigenous; 13–24 months: mean $200 vs $484; and 25–36 months: mean $181 vs $441). A stepwise generalised linear model of out-of-pocket expenditure found that Indigenous status was a significant predictor of out of pocket expenditure. We found that Indigenous people with cancer on average accessed 236 services per person, however, this would increase to 309 services per person if Indigenous people had the same rate of service use as non-Indigenous people. Conclusions Indigenous people with cancer had lower out-of-pocket expenditure, but also accessed fewer Medicare services compared to their non-Indigenous counterparts. Indigenous people with cancer were less likely to access specialist attendances, pathology tests, and diagnostic imaging through MBS, and more likely to access primary health care, such as services provided by general practitioners.

Following publication of the original article [1], the authors reported errors on their article.

Abstract Although cancer survival in general has improved in Australia over the past 30 years, Indigenous Australians, socioeconomically disadvantaged persons, and people living in remote areas still experience poorer health outcomes. This paper aims to describe the development of CancerCostMod, and to present the healthcare expenditure and patient co-payments for the first 12-months post-diagnosis. The base population is a census of all cancer diagnoses (excluding non-melanoma skin cancer) in Queensland, Australia between 1 July 2011 and 30 June 2012 (N = 25,553). Each individual record was linked to their Queensland Health Admitted Patient Data Collection, Emergency Department Information System, Medicare Benefits Schedule, and Pharmaceutical Benefits Scheme records from 1 July 2011 to 30 June 2015. Indigenous status was recorded for 87% of participants in our base population. Multiple imputation was used to assign Indigenous status to records where Indigenous status was missing. This base population was then weighted, using a programmed SAS macro (GREGWT) to be representative of the Australian population. We adopted a national healthcare perspective to estimate the cost of cancer for hospital episodes, ED presentations, primary healthcare, and prescription pharmaceuticals. We also adopted an individual perspective, to estimate the primary healthcare and prescription pharmaceutical patient co-payments. Once weighted, our sample represents approximately 123,900 Australians (1.7% Indigenous Australians). The total healthcare system cost of all cancers during the first 12-months post diagnosis was $4.3 billion, and patient co-payments costs were $127 million. After adjusting for sex, age at diagnosis, Indigenous status, rurality, socioeconomic status, and broad cancer type, significant differences in costs were observed for population groups of interest within the first year post-diagnosis. This paper provides a more recent national estimate of the cost of cancer, and addresses current research gaps by highlighting the distribution of healthcare and individual costs by Indigenous status, rurality, and socioeconomic status.

Abstract Background In Australia, 40% of people diagnosed with cancer will be of working age (25–64 years). A cancer diagnosis may lead to temporary or permanent changes in a person’s labour force participation, which has an economic impact on both the individual and the economy. However, little is known about this economic impact of cancer due to lost productivity in Australia. This paper aims to determine the labour force participation characteristics of people with cancer, to estimate the indirect cost due to lost productivity, and to identify any inequality in the distribution of labour force absence in Australia. Methods This study used national cross-sectional data from the 2015 Survey of Disability, Ageing and Carers, conducted by the Australian Bureau of Statistics (ABS). The ABS weighted each component of the survey to ensure the sample represented the population distribution of Australia. The analysis was limited to people aged 25–64 years. Participants were assigned to one of three health condition groups: ‘no health condition’, ‘cancer’, and ‘any other long-term health condition’. A series of logistic regression models were constructed to determine the association between health condition and labour force participation. Results A total of 34,393 participants surveyed were aged 25–64 years, representing approximately 12,387,800 Australians. Almost half (46%) of people with cancer were not in the labour force, resulting in a reduction of $1.7 billion to the Australian gross domestic product (GDP). Amongst those in the labour force, people with no health condition were 3.00 times more likely to be employed full-time compared to people with cancer (95% CI 1.96–4.57), after adjusting for age, sex, educational attainment and rurality. Amongst those with cancer, people without a tertiary qualification were 3.73 times more likely to be out of the labour force (95% CI 1.97–7.07). Conclusions This paper is the first in Australia to estimate the national labour force participation rates of people with cancer. People with cancer were less likely to be in the labour force, resulting in a reduction in Australia’s GDP. Cancer survivors, especially those without a tertiary qualification may benefit from support to return to work after a diagnosis.