Case study 1: Acute rheumatic fever and rheumatic heart disease in Australia
Establishing a new data collection
Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) are preventable diseases associated with disadvantage, household overcrowding, inadequate health hardware (for example, facilities for washing people and clothing) and poor access to primary health care.
Aboriginal and Torres Strait Islander people experience some of the highest rates of ARF and RHD in the world, with most cases occurring in northern and central Australia in Queensland, Western Australia, South Australia and the Northern Territory. These jurisdictions have clinical registers to support patient management, each with a unique approach to data collection, analysis and reporting.
In 2018, we were funded by the Department of Health to establish the National RHD data collection. The challenge was to compile data held by the existing clinical registers into a coherent, consistent and comparable data set. We built on previous registers and worked with RHD Australia to define a set of core data items. New methods were needed to ensure each individual was counted once, despite potentially being captured multiple times over a lifetime, and in multiple jurisdictions.
Formalising data-sharing arrangements
The AIHW led the formalisation of data- sharing arrangements, and used our data receipt and storage tool, Validata™, for data submission. An advisory group was formed to guide the use, interpretation and dissemination of the data. Data assessment, validation, deduplication and analysis were undertaken in consultation with jurisdictional data managers and experts.
We explored the possibilities of incorporating case information from other jurisdictions. The New South Wales Government agreed to supply data from the New South Wales RHD register.
Improved information on ARF and RHD
Information from the collection was published for the first time in June 2019, with additional analysis and the hard-copy Acute rheumatic fever and rheumatic heart disease: in brief released in October 2019. The second annual report Acute rheumatic fever and rheumatic heart disease in Australia 2014–2018 followed in June 2020.
Gathering data from multiple jurisdictions into the collection allows for a more accurate understanding of not just the number of people with ARF and RHD, but their geographical spread, and the impact on health services in managing these cases over long periods.
All parties have worked to report comparable and consistent data and to ensure correct interpretation. They also committed to improving data quality over time. This information is critical for service planning and ensuring appropriate allocation of resources to help eliminate these preventable diseases.
Case study 2: Australian Health Performance Framework and MyHospitals redevelopment
Providing a single point of entry for health information
In September 2017, the Australian Health Ministers’ Advisory Council (AHMAC) endorsed the Australian Health Performance Framework (AHPF) and requested the AIHW take the lead in implementing it. The AHPF creates a new ‘national front door’ to health information. It replaces previous frameworks, including the National Health Reform Agreement Performance and Accountability Framework and the long-standing National Health Performance Framework.
Funding for the project was approved in 2018. An Implementation Working Group was formed to develop a high-level strategy for implementing the AHPF. The working group agreed on an initial set of indicators for reporting.
Another part of our AHPF challenge was to redevelop the national hospitals reporting platform. Since 1995, the AIHW has reported hospitals information at the national and state/territory levels via the Australian hospitals statistics series available on the AIHW website. Since 2010, the MyHospitals website also provided a platform for hospital- level reporting. Users needed to navigate both websites: the former to access national and state/territory hospitals data, and the latter for hospital-level data.
Launching a new web platform
After an initial consultation period starting in August 2019, the AIHW launched the new AHPF web platform on 11 December 2019. This new platform provides a high-level overview of how Australia is tracking in relation to health and our health system. It also acts as a navigation aid for users to access health data published by the AIHW as well as other agencies in the Australian Government and the state and territory governments. In addition, the AHPF indicators are presented using a variety of population group disaggregations and levels of geography, such as Primary Health Networks (PHNs).
On the same day, we launched a new MyHospitals reporting platform on the AIHW website. The new platform sits within the broader AHPF and serves as a single point of entry for national hospitals information, bringing together the Australian hospitals statistics series with the content from MyHospitals.
Users have information in a single place
The new hospitals reporting platform was successfully launched as part of the release of the Emergency department care 2018–19 and Elective surgery 2018–19.
For the first time, users could access more content ‘telling a story’ about Australia’s health and health system, including the hospital system, and presenting key messages about data at national, state/ territory, PHN, Local Hospital Network and hospital level all in one place. Users can also access information from the AIHW and other key national, state, territory and non-government agencies, such as the ABS, the National Health Funding Body, the Victorian Agency for Health Information, the Independent Hospital Pricing Authority, the New South Wales Bureau of Health Information and the Australian Commission on Safety and Quality in Health Care.
Case study 3: National people-centred reports
Comprehensive reporting on priority population groups
Effective service delivery and policy development for specific population groups, particularly those with potential additional vulnerabilities, require a complete and often complex picture of their characteristics, experiences and outcomes in life.
Periodic, comprehensive reporting that brings together a wide range of health and welfare data is needed to better understand the wellbeing of these groups, and Australians overall.
Publishing online, national people-centred reports
Using a new online format, structured around our people- centred model (Figure 2.2), we published 2 comprehensive national reports, Australia’s Children and People with disability in Australia.
With data from over 25 sources, each report provided a unique opportunity to describe and understand the wellbeing of these priority groups. In drawing this information together, the publications also identified data gaps which, if filled, would strengthen the evidence base. These reports covered key aspects of a person’s life, including social support, housing, justice and safety, education and skills, income and finance, health, and employment and work.
The overarching vision is that these reports continue to be updated with the latest national data to ensure the currency of information available.
Improved understanding of the wellbeing of priority population groups
Combined, the reports had strong impact in the community, receiving more than 130 media mentions (including print, newspaper, radio and television). These reports continue to inform debate and discussion about service needs, demands, investment, and data and research needs. They also provide a critical baseline to inform the development of relevant Australian Government policy initiatives, such as the replacement for the National Framework for Protecting Australia's Children 2009–2020, and the consultation process for developing performance indicators for the next National Disability Strategy.
These reports complement similar AIHW publications on priority areas and/or groups, including family, domestic and sexual violence, and Australia’s youth (forthcoming).
Future updates aim to provide greater insight on people’s pathways, outcomes and interactions across life domains, as more analysis of linked data assets, such as the National Disability Data Asset pilot, become available.
Case study 4: Cultural safety in health care for Indigenous Australians
Improving cultural safety for Aboriginal and Torres Strait Islander health-care users
In Australia, there is an increasing recognition that cultural safety is an important consideration for improved access and quality of care for Aboriginal and Torres Strait Islander health-care users. However, there has been a lack of conceptual clarity and agreement on terms for cultural safety and what they mean, and challenges in measuring the qualitative concepts.
The National Aboriginal and Torres Strait Islander Health Plan 2013–23 describes a vision for the Australian health system that is culturally safe, free of racism and inequality, and one where all Indigenous Australians have access to health services that are effective, high quality, appropriate and affordable. There are various definitions of cultural safety in relation to the provision of health care. The Cultural Respect Framework 2016–26 defines cultural safety as: ‘not [being] defined by the health professional, but is defined by the health consumer’s experience—the individual’s experience of care they are given, ability to access services and to raise concerns’.
Measuring cultural safety in the Australian health-care system is an important step to understanding if health care is delivered appropriately to Indigenous Australians. However, there is currently a lack of national- and state-level data to adequately measure progress.
Publishing a monitoring framework
In consultation with key stakeholders, we developed the Cultural safety in health care for Indigenous Australians: monitoring framework to bring together available data to assess progress in achieving cultural safety in health care among Indigenous Australians.
The framework comprises 3 reporting modules: measures focusing on culturally respectful health-care services; Indigenous people’s experience of health care; and access to health care as an indirect measure of cultural safety. It presents measures from national, state and regional data sources, where possible.
Improved measurement of cultural safety
The most recent data show that in relation to:
- health-care services—95% of Indigenous primary health-care providers had a formal commitment to provide culturally safe health care in 2017–18
- patient experience—an estimated 89% of Indigenous adults in non-remote areas who consulted a doctor in the previous 12 months said their doctor always/usually listened to them in 2018–19.
We are conducting further data development to address data gaps in cultural safety in health care for Indigenous Australians, especially in mainstream health services.
Case study 5: Health impact of tobacco use in Australia
Improving information on the current and future health impact of tobacco use
We aimed to provide more detailed estimates, than previously available, on the health impact of tobacco use in Australia, using the burden of disease analyses.
Better understanding the groups most at risk of disease burden due to smoking and the expected future health impact
Building on previous burden of disease analyses, the report Burden of tobacco use in Australia. Australian Burden of Disease Study 2015 was released in October 2019 to provide further insight into the health burden of tobacco use in Australia.
The report examines changes in the burden due to tobacco use over time and includes 5- and 10-year projections to explore the potential impact on disease burden if current trends in smoking continue. It includes a specific analysis of the health impact of tobacco use among people diagnosed with a mental health condition who have much higher smoking rates than the general population. It also draws out important differences in the burden for past and current smokers, for males and females, and inequalities across population groups (e.g. state/territory, remoteness and socioeconomic group).
The project involved collaboration with academic experts from the University of Canberra as well as researchers from the Australian National University working with the 45 & Up Study who provided data and methodological advice.
Value added to health prevention policy
The report showed that burden from smoking is falling and is expected to continue falling, though the story differs between men and women, and between past and present smokers.
The report was commended by the Department of Health and the staff at the minister’s office.
Release of this work also generated considerable interest and mentions in the media (including over 50 radio, 70 newspaper or online news and 12 television mentions) and results were presented at numerous conferences.
The information in this report highlights the varying and complex association between tobacco use and health. Results of this report can be used to prioritise actions to minimise the harm of tobacco in Australia.
Case study 6: Improved reporting of stillbirths and neonatal deaths in Australia
Improving reporting and filling data gaps
Australia is one of the safest places in the world for a baby to be born, yet every day 6 babies are stillborn and 2 die in the neonatal period.
The Senate Select Committee on Stillbirth Research and Education was established in early 2018 to inquire into the future of stillbirth research and education in Australia. It received over 269 submissions from individuals and organisations and multiple public hearings across Australia. The committee tabled its report on 4 December 2018. The AIHW has a strong history of collecting and reporting perinatal deaths data and has identified data gaps and areas for improved reporting.
Delivering novel analysis and increased transparency
The AIHW provided valuable information to the inquiry as to what data were currently available, collection methods and reporting. Throughout the inquiry and in its subsequent findings, we noted ongoing themes surrounding:
- why the rate of stillborn babies in Australia had not declined in 20 years
- a need for more data around timing and causes of death, autopsies and terminations of pregnancy
- increased transparency around data availability and timeliness
- explaining differences across national data collections.
In response, we released the Stillbirths and neonatal deaths in Australia 2015–2016 report on 4 July 2019 in which:
- new analysis showed that while the overall perinatal mortality rate has remained relatively unchanged for 20 years, it decreased among babies born at 23 weeks or more gestation, babies born to Indigenous women (since 2005) and deaths occurring in the third trimester of pregnancy
- increased reporting on the timing and causes of death and autopsy were included
- graphical displays showed the quality and availability of perinatal mortality data, as well as the timelines of supply of data from state and territory governments through to validation and reporting
- we collaborated with the ABS to provide an explanation for the variation in numbers reported by the AIHW and the ABS due to differences in data collection methods.
Continued development of data on perinatal deaths
The AIHW is a valuable source of data and information for stillbirths and neonatal deaths. We are responsive to the identification of gaps in data and reporting. Work continues on the standardisation of data collection and improvement on remaining data gaps surrounding terminations of pregnancy and contributing factors.
Membership of the National Stillbirth Project Reference Group enable us to continue to provide input at a national level, including involvement in the development of the National Stillbirth Action and Implementation Plan.
Case study 7: Improving information on use of alcohol, tobacco and illicit drugs by Indigenous people in remote communities
Collecting better data on alcohol and other drug use by Indigenous Australians
Understanding patterns of alcohol, tobacco and other drug use in specific populations is important to inform the development and evaluation of effective policies and programs and ensure that efforts will benefit those most at risk of harm. Current national surveys are limited in their ability to provide a comprehensive picture of Indigenous Australians’ use of alcohol and other drugs and associated harms—either because the survey is not representative of the Indigenous population or does not collect enough in- depth data on alcohol and other drug use.
The National Drug Strategy Household Survey (NDSHS) is the most comprehensive survey of licit and illicit drug use in Australia. While the proportion of Aboriginal and Torres Strait Islander respondents in each wave of the survey is broadly similar to the proportion of Indigenous people in the Australian population, remote Indigenous communities have been under-represented.
Improving the representativeness of the Indigenous population in the NSDHS
We invested in surveying people living in remote Indigenous communities with the aim of improving the representativeness of the Indigenous population in the NDSHS. In previous survey waves, randomly selected remote Indigenous communities where residents primarily spoke Indigenous languages were replaced by other communities where English was the primary language spoken.
In 2019, rather than replacing these communities, we actively sought to engage and work with them through specialist Indigenous interviewers and local translators. This approach required some modification to the methodology for selecting participants and collecting data to ensure the process was culturally appropriate.
Better representativeness of the Indigenous population
The 8 randomly selected communities were all located in the Northern Territory. All 144 respondents who were approached agreed to participate in the survey.
This is the first time that people living in remote Indigenous communities were included in the NDSHS. Their inclusion improves the overall representativeness of the Indigenous population in the survey.
However, differences in sampling and data collection methodology limit the comparability of these data with the results for other Indigenous Australians. The selected communities were all in one jurisdiction, raising questions about the extent to which the sample is nationally representative of all remote Indigenous communities.
Future surveys will consider changing the sampling frame to improve the representation of remote Indigenous communities and the overall Indigenous population.