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Data development

Introduction

There are well documented limitations with the availability and quality of data about Aboriginal and Torres Strait Islander health. These limitations include the completeness and quality of Indigenous identification data on all key health measures including mortality and morbidity, uncertainty about the size and composition of the Aboriginal and Torres Strait Islander population and a paucity of available data on other health-related issues such as access to health services.

The following information has been provided to illustrate data development activities either completed or ongoing.

Australian Government

The Australian Government is actively engaged with key stakeholders, state and territory governments, the Australian Bureau of Statistics (ABS) and the Australian Institute of Health and Welfare (AIHW) to improve the availability and quality of Aboriginal and Torres Strait Islander health data.

Under the new National Agreement on Closing the Gap, the Australian Government, along with the state and territories, the Australian Local Government Association and the Coalition of Aboriginal and Torres Strait Islander Peak Organisations (Coalition of Peaks) have committed to establish a data development plan to prioritise areas of data improvements. These are areas that are important for our understanding of outcomes for Aboriginal and Torres Strait Islander people but cannot be measured currently and where further work is required. Specific data development activities have been identified for all targets included in the Agreement. A data development plan will be developed in partnership and jointly agreed by all Parties to the Agreement within two years of the Agreement coming into operation.

Shared access to data and information at a regional level is also a key priority reform area that has been agreed between Australian governments and Aboriginal and Torres Strait Islander peak organisations under the Agreement. As part of Priority Reform Four of the National Agreement, work is underway to establish partnerships with Aboriginal and Torres Strait Islander organisations and communities to improve collection, access, management and use of data. These partnerships will build capacity of Aboriginal and Torres Strait Islander organisations and communities to access and use and interpret data for local decision-making. Government Parties have committed to share available, disaggregated regional data and information with Aboriginal and Torres Strait Islander organisations and communities on Closing the Gap.

Data development projects already completed

2016 Census of Population and Housing

The 2016 Census of Population and Housing has continued the 2011 targeted strategy, which aimed to improve identification and enumeration of the Aboriginal and Torres Strait Islander population. This included strong engagement prior to the Census event through the ABS’ established Indigenous Engagement Managers/Officers network and use of local Aboriginal and Torres Strait Islander regional champions to encourage high levels of participation. Field staff recruitment processes also targeted local people with local knowledge and strong ties to their communities.

Although the Census ‘digital first’ strategy was rolled out across Australia, Aboriginal and Torres Strait Islander people living in remote towns with large Indigenous populations and those living in discrete Indigenous communities were generally counted through a personal interview process. Various support arrangements were also provided to populations living in other places to ensure everyone had the opportunity to be counted.

2016 Post Enumeration Survey (PES)

The Post Enumeration Survey (PES) provides a national process to assess the efficacy and coverage of the Census count. The size of the 2016 PES sample was 53,800, representing an increase of 20% on the size of the 2011 PES sample. The PES sample comprises a sample of dwellings from the general population and a sample of dwellings from discrete Indigenous communities (ABS 2017).

PES consolidated the 2011 methodological innovation including: continuing use of Automated Data Linkage; and effective collection of Indigenous status of all persons living in the responding dwelling.

Aboriginal and Torres Strait Islander Health and Social Surveys

The ABS currently has a 6-yearly cycle for Aboriginal and Torres Strait Islander Social and Health Surveys. The timing of these surveys is scheduled in order to provide 3-yearly estimates for key statistics collected in both surveys. The ABS has released findings from the 2018–19 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS). It collected information on a number of topics for the first time, including mental health conditions, medications, consumption of sugar sweetened and diet drinks, experiences of harm and a hearing test. Analytical commentary, a promotional video highlighting summary results, Excel data tables of key results, and a range of explanatory materials are available on the ABS website (www.abs.gov.au). Microdata has also been released through a Confidentialised Unit Record File and a Survey Table Builder product.

The ABS released findings from the 2014–15 National Aboriginal and Torres Strait Islander Social Survey (NATSISS) in 2016, and these results are also available on the ABS website.

National best practice guidelines

In 2010 the AIHW released the National best practice guidelines for collecting Indigenous status in health data sets (AIHW 2010). The AIHW’s National Indigenous Data Improvement Support Centre (NIDISC) was established to support jurisdictions and service providers to implement the guidelines. Posters and brochures encouraging Aboriginal and Torres Strait Islander identification in response to the Standard Indigenous question are available from the NIDISC.

The AIHW has also produced reports that document the quality of identification in key AIHW datasets. The report Towards Better Indigenous Health Data (2013) documented implementation activities across jurisdictions and sectors, and identified barriers and facilitators to implementation. The sectors and data sets examined included hospitals sector, midwives sector (perinatal data), alcohol and other drug treatment services sector, mental health services sector, diabetes register, and cancer registries.

Pathology data remains an area where identification of Indigenous Australians is not routine. The 2013 AIHW report The Inclusion of Indigenous Status on Pathology Request Forms recommended the inclusion of Indigenous status on pathology request forms as a way to improve Indigenous identification in cancer registries, communicable diseases and cervical screening registries. Indigenous identification remains low and incomplete in the National Cancer Screening Register (NCSR) and the National Notifiable Diseases Surveillance System. The NCSR currently obtains Indigenous status information from sources that include, jurisdictional cervical screening registers, pathology forms and colonoscopy reports, but in 2018–2019 Indigenous status information remained unavailable for 28% of people who were screened by an HPV test.

General practitioners were identified as a high priority for efforts to improve the recording of Indigenous status. Recommendations generated from stakeholder workshops were presented in Taking the Next Steps: Identification of Aboriginal and Torres Strait Islander Status in General Practice.

The AIHW has also published reports on the assessment of the quality of Indigenous identification in hospital separations data, perinatal data, drug and alcohol treatment data and mental health data, cancer registry data, the national diabetes register data, the national Key Performance Indicator data collection and community services data collections.

The AIHW’s 2013 report The inclusion of Indigenous status on pathology request forms (AIHW 2013a) outlines work towards the inclusion of Indigenous status on pathology request forms as a way to improve Indigenous identification in national cancer, communicable disease and cervical screening registries.

The AIHW the ABS in partnership with jurisdictions developed national best practice guidelines for linking data relating to Indigenous Australians. The guidelines for linking Indigenous data covered linkage methods and protocols, privacy protocols, quality standards, and procedures. The National Best Practice Guidelines for Data Linkage Activities Relating to Aboriginal and Torres Strait Islander People (AIHW & ABS 2012) were released on 9 July 2012. Two attachments to the Guidelines were released on 14 June 2013. The attachments review the current and recent body of data linkage activities relating to Aboriginal and Torres Strait Islander people, along with a thematic listing of these activities. In describing and comparing data linkage practices to date, these documents provide an evidence base for the national data linkage guidelines.

Under Schedule F of the National Indigenous Reform Agreement (NIRA), jurisdictions undertook to implement the National best practice guidelines for collecting Indigenous status in health data sets (the Guidelines) across the health sector by December 2012.

Aboriginal and Torres Strait Islander engagement

The ABS remains committed to a program of strong engagement with Aboriginal and Torres Strait Islander communities and representative bodies which directly impacts the quality of data outputs. The ABS Aboriginal and Torres Strait Islander Engagement Strategy is the main vehicle for delivering this program. The strategy aims to deliver better data outcomes through ongoing engagement that is co-ordinated and culturally appropriate, and through providing cultural security for Aboriginal and Torres Strait Islander people in all interactions. The ABS network of Aboriginal and Torres Strait Islander Engagement Managers play a central role in:

  • engaging with urban and remote Aboriginal and Torres Strait Islander communities through collaborative partnerships to increase understanding of and participation in ABS collections
  • returning information to Aboriginal and Torres Strait Islander communities, including the provision of statistical training in order to build statistical literacy and enhance the recognition and value of ABS activities
  • improving the quality and relevance of Aboriginal and Torres Strait Islander statistics to the needs of their communities
  • encouraging and supporting access to and usage of ABS information sources.

Posters and brochures encouraging Aboriginal and Torres Strait Islander identification in response to the Standard Indigenous question are available from the ABS. Requests can be made using the following email (coeatsis@abs.gov.au). Separate materials have been developed for service providers, as well as for the Aboriginal and Torres Strait Islander population.

Ongoing data development projects

Indigenous status

The AIHW and the ABS work in partnership with jurisdictions to lead analysis of the level of Indigenous identification in key datasets, including a baseline report and ongoing five-yearly studies to monitor identification over time. States and territories have agreed to adopt the standard Indigenous status question and recording categories on data collection and information systems for key data sets. States and territories have agreed to improve Aboriginal and Torres Strait Islander data collection procedures in key data collections including implementation of the AIHW Best Practice Guidelines.

States and territories have agreed to develop and implement a program to raise the Aboriginal and Torres Strait Islander community’s awareness about the importance of identifying as Indigenous.

Under Schedule F of the National Indigenous Reform Agreement (NIRA), jurisdictions undertook to implement the AIHW National best practice guidelines for collecting Indigenous status in health data sets (the Guidelines) across the health sector by December 2012.

The AIHW conducted an extensive investigation of the implementation of the Guidelines and published its findings in the Towards Better Indigenous health data (AIHW 2013b) report in 2013. The report documented implementation activities across jurisdictions and sectors, collected status information about the sectors and datasets in scope, and identified barriers and facilitators to implementation.

As part of this investigation, the AIHW identified the general practice sector as a high priority for efforts to improve the recording of Indigenous status, because it has a unique role in providing access to health measures specific to Aboriginal and Torres Strait Islander people, as well as in providing input to data collections. The AIHW conducted national stakeholder workshops on the identification of Indigenous status in general practice in 2011 and 2012, and published its consolidated findings in 2013 in the Taking the next steps: identification of Aboriginal and Torres Strait Islander status in general practice report (AIHW 2013c).

In line with the recommendations of the Taking the next steps: identification of Aboriginal and Torres Strait Islander status in general practice report, the AIHW has continued to develop its reporting on the uptake of the Indigenous-specific health checks that Aboriginal and Torres Strait Islander people can receive from their GP (MBS item 715). The Indigenous health checks and follow-ups web report published in June 2019 is the AIHW’s latest report on the Indigenous health checks. It shows how uptake of the health checks varies geographically and how it has changed from 2010–11 to 2017–18 in interactive visualisations. For the first time, data on Indigenous-specific follow-ups are also included the report. In addition to the statistics presented by state/territory and by Primary Health Network as in earlier reports, the latest report also shows geographic variation at a more local level (ABS’s Statistical Area Level 3).

The AIHW provides continuing support for better Indigenous identification through NIDISC. The NIDISC helpdesk provides advice and assistance to health providers on issues relating to the collection and recording of Indigenous status. NIDISC also supports better Indigenous data collection by providing resources and training materials.

Mortality data and life expectancy

The ABS first conducted the Indigenous Mortality Study as part of the ABS Census Data Enhancement (CDE) project for the 2006 Census. It has since been repeated for subsequent Censuses. Most recently, the 2016 Death registrations to Census linkage project was undertaken to enable estimation of the under-coverage of Aboriginal and Torres Strait Islander deaths in the death registration system, to improve estimation of the 2015–2017 Aboriginal and Torres Strait Islander life expectancy estimates. Life Tables for Aboriginal and Torres Strait Islander Australians, 2015–2017 (cat. no. 3302.0.5.003) were released on 29 November 2018.

The National Civil Registration and Statistics Improvement Committee (NCR SIC) is actively engaged with both the Australian Government Department of Human Services and the Digital Transformation Office to look for ways to enhance birth registrations through inter-agency cooperation. This work has the potential to improve coverage and timeliness of registrations, especially among Aboriginal and Torres Strait Islander people.

ABS conducted the 2016 Death registrations to Census Linkage Project, which linked the 2016 Census records with all registered deaths that occurred from 9 August 2016 to 28 September 2017. Linking results were used to calculate factors for adjusting registered deaths in order to estimate a more accurate number of deaths of Aboriginal and Torres Strait Islander people. Adjusted deaths were then used for deriving life tables and life expectancy estimates. 

The AIHW Linked Perinatal, Births, Deaths Dataset Project aims to create a national, ongoing, linked perinatal, birth and death dataset for the purposes of obtaining more accurate estimates of Indigenous infant and child mortality and analysing the factors affecting infant and child health outcomes in Australia. Infant and child mortality rates are important markers of population health. At the national level, aggregate data demonstrate that there are significant differences in infant and child mortality rates within Australia by factors such as socio-demographics and maternal health status, but these factors are not able to be analysed simultaneously as they are dispersed across a range of different data sources.

An initial de-identified dataset has been created by linking unit record level data across jurisdictions from perinatal data collections, birth records, and death records covering all births from 2003 to 2010, and deaths within this birth cohort occurring up to age 5 years. A methodology paper, which examines the linkage methodology on which the Linked Perinatal, Births, Deaths Dataset is based, as well as the quality of the linked data, will be published in 2020. The result of this review will inform the future direction of the Linked Perinatal, Births, Deaths Dataset project.

Data harmonisation

The ABS works with the Registries of Births, Deaths and Marriages (RBDMs) through the National Civil Registration and Statistics Improvement Committee (NCR SIC). The aim of this committee is to improve harmonisation of data collection across jurisdictions, improve coordination between agencies and connect more strongly with other stakeholders. Information on vital events from the RBDMs form the foundation of Australia’s demographic statistics.

National key performance indicators (nKPIs)

As part of the NIRA, the Council of Australian Governments (COAG) agreed that the Australian Government Department of Health in partnership with the state and territory health departments and in collaboration with the AIHW, would develop a set of national key performance indicators (nKPIs) for Indigenous specific primary health care organisations. The AIHW receives funding from the Department of Health to collect, manage and report on the nKPIs.

The scope of organisations providing nKPI data has increased over time. In the trial collection in February 2012, only organisations participating in the Australian Government’s Healthy for Life program submitted data (around 80 organisations). In January 2013, the scope expanded to include all Indigenous primary health care organisations funded by the Australian Government. Currently, data from around 247 organisations are collected biannually.

The nKPIs collect information on a set of process of care and health outcome indicators for Indigenous Australians. The indicators focus on maternal and child health, preventative health and chronic disease management. Information from the nKPI collection helps monitor progress against the Closing the Gap targets, and supports the national health goals set out in the Implementation Plan for the National Aboriginal and Torres Strait Islander Health Plan 2013–2023.

Twenty-four indicators were given in principle endorsement by the Australian Health Ministers’ Advisory Council in early 2011. Implementation and collection of these indicators has been staged over time. In 2011–2012, eleven indicators were implemented, with a further eight introduced in 2012–2013. By December 2015, data were collected against 22 indicators, with the remaining two indicators being introduced in June 2017.

The Implementation plan

The Implementation Plan for the National Aboriginal and Torres Strait Islander Health Plan commits to the development and implementation of a data development plan to establish new measures. The data development is to occur during the lifetime of the Implementation Plan, with the new measures to be monitored in future Implementation Plans.

The AIHW has provided the Australian Government Department of Health with advice regarding potential data development, and what work may be required to establish new measures for monitoring and goal setting for the Implementation Plan. The AIHW developed a tracking tool to monitor progress of the 20 goals agreed to.

Justice data

The National Prisoner Health Data Collection was first conducted in 2009, based on a set of indicators aligned to the National Health Performance Framework, and designed to monitor the health of prisoners. Subsequent data collections were held in 2010, 2012, 2015 and 2018. The collection provides information on the health of people entering prison (prison entrants), health conditions managed at prison clinics, medications administered at the clinics, the health of people about to be released from prison (prison dischargees), and operations of the clinics. Major reports relating to each data collection have been released by the AIHW, supplemented by smaller bulletins focused on important topics such as mental health. All of these reports include analysis of the health of Aboriginal and Torres Strait Islander prisoners.

Perinatal data

The AIHW continues to work with the states and territories in the development of an enhanced Perinatal National Minimum Data Set (NMDS) and Perinatal National Best Endeavours Data Set (NBEDS). NBEDS data items are intended as an interim standard only - if jurisdictions are able to report the NBEDS data elements, then they should do so. It is expected that the data elements be included as mandatory data elements in future Perinatal national minimum data sets:

  • A data item on labour induction method was added to the Perinatal NMDS from 1 July 2019.
  • Data items on whether active resuscitation was required and active resuscitation methods was added to the Perinatal NMDS from 1 July 2019.
  • Data items on diabetes and hypertension status during pregnancy were moved from the Perinatal NBEDS to the Perinatal NMDS from 1 July 2020.
  • Data items on alcohol use during pregnancy were added to the Perinatal NBEDS from 1 July 2019
  • Alcohol consumption after 20 weeks of pregnancy
  • Alcohol consumption frequency after 20 weeks of pregnancy
  • Alcohol consumption frequency in the first 20 weeks of pregnancy
  • Alcohol consumption in the first 20 weeks of pregnancy
  • Number of standard drinks consumed when drinking alcohol after 20 weeks of pregnancy.
  • Number of standard drinks consumed when drinking alcohol in the first 20 weeks of pregnancy.
  • A data item on family violence screening was added to the Perinatal NBEDS from 1 July 2020.
  • Data items relating to mental health were added to the Perinatal NBEDS from 1 July 2020:
  • presence or history of mental health condition indicator
  • antenatal mental health risk screening status
  • indication of possible symptoms of depression at an antenatal care visit (Edinburgh Postnatal Depression Scale score).
  • Data items on the maternity model of care at the onset of labour (or non-labour caesarean section) and the primary maternity model of care were added to the Perinatal NBEDS from 1 July 2020.

Data items on maternal vaccination for pertussis and influenza (whether vaccination received and timing of vaccination during pregnancy) will be added to the Perinatal NBEDS from 1 July 2021.

Mental Health

The AIHW has been commissioned to establish a Mental Health and Suicide Prevention Clearinghouse. The clearinghouse will compile resources, tools and program evaluations for all settings to support the development of culturally safe models of service delivery, including the use of cultural healing and trauma-informed care.

Regional reporting

The AIHW is creating a Regional Insights for Indigenous Communities (RIFIC) website that will present data and statistics about Aboriginal and Torres Strait Islander people and their health and wellbeing in dashboards with maps and other visualisations. The website will make it easy for users to find the available regional statistics that are most relevant to their communities of interest through a custom-made search function that matches names of locations to regions.

Jurisdictions

The Australian Capital Territory

In 2017-2018, the ACT Health Directorate conducted a System-Wide Data Review (SWDR).

The SWDR examined issues around data governance, data management and performance reporting. The SWDR Outcomes Report Leading Data Reform: The Way Forward was released in August 2018 and provided nine key recommendations to be addressed through a three-year program of work.

A key outcome under the SWDR has been the development of the Performance, Reporting and Data Management Strategy, which articulates the benefits for stakeholders including: Transforming health care outcomes through data, new knowledge and enhanced technology. Health consumers, health professionals, researchers and the broader health system will benefit from the delivery of the Strategy.

The ACT Health Directorate continues to work to strengthen Aboriginal and Torres Strait Islander health data quality. Activities include:

  • The ACT Patient Administration System has the Aboriginal and Torres Strait Islander identification question as a mandatory field. All pathology forms and all outpatient collection stations within the hospital collect the information. A process to capture complaint statistics from Aboriginal and/or Torres Strait Islander patients of the Canberra Hospital has been developed.
  • The Patient Master Index (PMI) supports the use of a single unique patient identifier across all ACT Health service areas. This helps to ensure patient records can be linked across services to provide continuity of care. Aboriginal and Torres Strait Islander identification data is collected and stored within the PMI, and historical information is retained for management and reporting purposes.

New South Wales

In New South Wales, strategies are being implemented to improve the recording of patient Aboriginal status in patient information systems, the reporting of Aboriginality in health datasets and the monitoring of Aboriginal health programs. Examples include: the Aboriginal and Torres Strait Islander Origin: Recording of Information of Patients and Clients policy implementation; Asking the question: improving identification of Aboriginal people training; Enhanced Reporting of Aboriginality; and the creation of the Aboriginal Maternal and Infant Health Service Data Collection. Such efforts strengthen routine data as a resource for monitoring, research and evaluation.

NSW Health has established a statistical method that uses health record linkage and an algorithm to estimate the quality of reporting of Aboriginal people in health datasets. The Enhanced Reporting of Aboriginality variable is available in several public health registers and is used to support Aboriginal health research and evaluation, improve surveillance and reporting of infectious diseases in Aboriginal people, and monitor the performance of NSW Health organisations in recording Aboriginal status at the point of care.

NSW Health efforts to improve the quality of reporting of Aboriginality in perinatal, admitted patient and emergency department datasets have contributed to steady increases in the estimated accuracy of reporting of Aboriginality in these datasets, from 59–77% in 2010 to 84–91% in 2016–2017.

The Northern Territory

The Northern Territory Aboriginal Health Key Performance Indicators (NTAHKPIs) were developed by the Northern Territory Aboriginal Health Forum (NTAHF), which comprises of the Australian Government Departments of Health and the Prime Minister and Cabinet, Aboriginal Medical Services Alliance Northern Territory, Northern Territory Primary Health Network and Northern Territory Department of Health. The goal of the NTAHKPIs is to improve primary health care services in the Northern Territory by building capacity at the service level, and to collect, analyse and interpret data at the system level that will:

  • inform understanding of trends in individual and population health outcomes
  • identify factors influencing these trends
  • inform appropriate action, planning and policy development.

The standard NTAHKPI reports are provided to each Primary Health Care service provider with comparisons on each health community result against the overall Northern Territory results. This baseline information is crucial in assessing and improving Aboriginal health outcomes as well as assisting the further development of future indicators and providing information towards developing a Northern Territory wide model of Continuous Quality Improvement.

Processes for data collection from the various health services have been defined and data delivery from all Northern Territory community health centres commenced on 1 July 2009. As of September 2017, there are 28 Core NTAHKPIs linked to four domains:

  • Domain 1, Clinical Services
  • Domain 2, Corporate Services & Infrastructure
  • Domain 3, Advocacy, Knowledge & Research, Policy & Planning
  • Domain 4, Community engagement, Control & Cultural Safety.

As of May 2019, key performance indicators and definitions are linked to all four domains. The recent adoption of definitions corresponding with domains 2, 3, and 4 will enhance reporting and allow for a more comprehensive view of service provision. The inclusion of an additional domain, Domain 5 - Health Promotion is currently under consideration.

Queensland

Enhanced Performance Reporting for Aboriginal and Torres Strait Islander Health in Queensland:

The Queensland Department of Health has developed a performance reporting system which aims to empower decision makers with actionable information to improve system performance, identify opportunities for improvement and peer comparisons.

A range of regular reports on the health system are generated for a suite of performance indicators disaggregated by Indigenous status. These reports are prepared for the Minister, the Director-General, executives of the Department of Health and Hospital and Health Services and Queensland Government central agencies.

The reports comprise measures of service delivery that are efficient, timely, safe, effective, equitable, and patient-centred.

The intent for this reporting process is to build the capacity and sustainability of mainstream health services to better target and respond to the health needs of Aboriginal and Torres Strait Islander Queenslanders.

Birth registration

In June 2018 the Queensland Ombudsman released the Indigenous Birth Registration Report. An investigation into the under-registration of Indigenous births in Queensland (the report) which considered possible reasons for the under-registration of Aboriginal and Torres Strait Islander births in Queensland. The report examined the current practices for registering a birth and obtaining a birth certificate and whether the practices of RBDM, and other relevant agencies, should be altered to ensure all births in Queensland are registered. Nine recommendations were made by the Ombudsman, all of which the Department of Justice and Attorney-General has agreed to implement.

The Ombudsman’s investigation identified a number of issues which may be contributing to the lower rates of Aboriginal and Torres Strait Islander births in Queensland, including:

  • the fees and penalties associated with late birth registration;
  • the perception that there is a cost involved in registering a birth;
  • the fee for a birth certificate and the absence of a fee waiver policy;
  • the impact of the shift to online birth registration, particularly for Aboriginal and Torres Strait Islander peoples living in remote areas; and
  • methods of interacting with Aboriginal and Torres Strait Islander clients that may not be culturally appropriate.

The investigation found the current level of coordination between Queensland Government agencies to be inadequate and identified that there was a role for many agencies to play in encouraging and facilitating birth registration and certification. To address this issue the Ombudsman recommended that a cross-agency strategy aimed at increasing the Indigenous birth registration rate to the same level as non-Indigenous births, be developed.

To that end, the Queensland Office of Births Deaths and Marriages has established a cross government working party which will be responsible for developing a Strategy, Action Plan and Implementation plan to increase the registration rate of Aboriginal and Torres Strait Islander births in Queensland, on behalf of the Registry Project Board.

The Better Cardiac Care Data Linkage Project

An overview of the Queensland Aboriginal and Torres Strait Islander Better Cardiac Care Data Linkage Project (BCCDLP) is provided below.

The Australian Health Ministers’ Advisory Council (AHMAC), has highlighted cardiac care disparities between Aboriginal and Torres Strait Islander people and non-Indigenous Australians as a health priority action towards closing the gap in life expectancy. They have initiated the Better Cardiac Care for Aboriginal and Torres Strait Islander People project to reduce deaths and ill health from cardiac conditions among Aboriginal and Torres Strait Islander Australians. In conjunction with the Queensland Health Aboriginal and Torres Strait Islander Health Branch, researchers from the Menzies School of Health Research will conduct the Better Cardiac Care Data Linkage Project for Aboriginal and Torres Strait Islander people in Queensland.

Objectives:

By linking de-identified Queensland and Australian Government health administrative datasets, this project aims to identify gaps in the cardiac care continuum for Aboriginal and Torres Strait Islander people with cardiovascular disease (CVD).

We will retrospectively describe the patient journey, quality of care and impact on health outcomes from five years prior and two years subsequent to hospitalisation, for people with CVD, including Ischaemic Heart Disease (IHD), Congestive Heart Failure (CHF), stroke, or ARF/RHD), who were first hospitalised in Queensland between 2010–11 and 2015–16. The project will assess the continuum of care provided against clinical guidelines and best practice standards. An analysis of health system costs for different patterns of care will also be undertaken.

Specifically, the project aims to:

  • Describe access to primary and secondary preventive care, acute and post-acute care for Aboriginal and Torres Strait Islander people hospitalised with cardiovascular disease.
  • Describe delays and disruptions in the continuum of care based on best practice standards.
  • Analyse the variation in patterns of care for Aboriginal and Torres Strait Islander people and non-Indigenous people, stratified by age, sex, location and area-level socioeconomic disadvantage.
  • Examine the impact of the variation in patterns of care on adverse patient outcomes (such as hospital readmissions and survival time), adjusted for the presence of comorbidity and other potential confounding factors, to inform improvements in coordination across the care continuum.

South Australia

A pilot project is underway in South Australia to use multi-linked data from SA/NT Datalink to improve the identification of Aboriginal and Torres Strait Islander status on three major population health datasets: The South Australian Cancer Registry, the Perinatal Registry and the Cervical Screening Registry (up to the end of 2018). This project involves provision back to these registries of Aboriginal and Torres Strait Islander status across all health but also a collective of five non-health datasets (not identified). An algorithm for using this information will be developed, with sensitivity analysis of the consequence of the algorithm on Aboriginal and Torres Strait Islander health outcomes across the three data sets.

The algorithm will be used, if successful, on an ongoing basis by the South Australian Cancer Registry and the Perinatal Registry (given the transition to the National Cervical Screening Registry, this work will not extend to cervical screening going forward).

Since 2012, the South Australian Perinatal Statistics collection has recorded the Aboriginal and Torres Strait Islander status of babies as separate from their mother. This enables babies born in South Australia who have an Aboriginal or Torres Strait Islander father and non-Aboriginal or Torres Strait Islander mother to be recorded appropriately. A significant improvement has been made in the data from 2016 onwards conducting linkage with birth certificate data held by Births, Deaths and Marriages SA to better ascertain Aboriginal and Torres Strait Islander status. In addition, Aboriginal and Torres Strait Islander status is also verified using supplementary sources such as electronic hospital records.

In the South Australian Cancer Registry, the implementation of SA Pathology’s new Millennium laboratory information system in 2018 (for public pathology) has provided Aboriginal and Torres Strait Islander status on pathology reports. This was an item not previously received via pathology, and will be a significant improvement to the quality of data recorded in this collection.

Major data assets, such as the South Australian equivalent of the Admitted Patient Care National Minimum Data Set (NMDS) and the Non-Admitted Patient Emergency Department NMDS are being monitored for ‘unknown’ and ‘not stated’ Aboriginal and/or Torres Strait Islander status. To assist with this, quality checks have been introduced requesting review of records where a known status was previously supplied. 

The concept of ‘once Aboriginal, always Aboriginal’ is also being communicated along with the role out of cultural awareness programs and in support of the National Accreditation Standards. Profiling with a data quality lens across systems and data assets will also improve the richness of information available to support and evaluate initiatives, leveraging the SA/NT Datalink pilot work being undertaken with the cancer registries.

Tasmania

Recording Indigenous status information is mandatory in core Tasmanian hospital administration systems, including for admitted, emergency department, non-admitted and maternity patients. The National best practice guidelines for collecting Indigenous status in health data sets (AIHW 2010) is the primary resource used in Tasmania to support data recording, collection and reporting practices.

The tripartite Tasmanian Aboriginal Health and Wellbeing 2016–2020 Framework Agreement provides a platform for the Australian Government Department of Health, Tasmanian Department of Health and the Tasmanian Aboriginal Centre to work together on agreed priorities to improve the health and wellbeing of Aboriginal people in Tasmania. The Tasmanian Aboriginal Health Forum (TAHF), consisting of the parties to the Framework Agreement, continues to meet to deliver on the aims of the Framework Agreement and to foster collaborative planning, information sharing and partnership approaches to improve Aboriginal health outcomes. Improving data collection and reporting is one of three identified priorities.

Better recording of Aboriginal status was identified as a priority by Aboriginal people in Tasmania through consultation in 2018. Several strategies have been identified and are being explored, including staff training, a review of health service admissions forms and processes, and development of new promotional posters.

Victoria

Data collection

In Victoria, Aboriginal and Torres Strait Islander status is a mandatory field in all major health datasets. The Victorian Admitted Episodes Dataset (VAED), the Victorian Emergency Minimum Dataset (VEMD), and the Victorian Perinatal Data Collection (VPDC) contain good-quality data on Indigenous identification. Indigenous identification is also collected through the Alcohol and Drug Information System (ADIS), infectious diseases (PHESS), aged care (HACC and ACAS), maternal and child health (MCH) and community health direct care databases.

The Aboriginal population of Victoria forms a small proportion of a large, mainly urban population. Correct identification of Aboriginal people in Victoria is challenging in all datasets.

The Victorian Aboriginal Affairs Framework 2018-2023 (the VAAF) provides an ambitious and forward-looking agenda for Aboriginal affairs. The VAAF has two key purposes:

  • It is the Victorian Government’s overarching framework for working with Aboriginal Victorians, organisations and the wider community to drive action and improve outcomes.
  • It sets out whole of government self-determination enablers and principles and commits government to significant structural and systemic transformation.

Since 2006, Victoria has implemented whole of government frameworks to address the gaps between Aboriginal and non-Aboriginal Victorians. This has included the national Closing the Gap agenda since its commencement in 2008. These frameworks have reflected the Victorian context, including the unique voices, strength, resilience and cultural knowledge of Aboriginal people in Victoria. Past government reporting in Aboriginal affairs focused on ‘how Aboriginal people are faring’. While this VAAF still has a focus on measuring improvements in people’s lives, it has transitioned to a new approach that enables community to hold government to account. The VAAF recognises that to achieve positive outcomes, we must fundamentally change the way governments work with Aboriginal people

Measures to improve data

The Improving Care for Aboriginal and Torres Strait Islander Patients (ICAP) program includes 30% case-mix co-payment to hospitals for acute, sub-acute and mental health patients identified as Aboriginal. The program encourages an outcomes focus leading to improved identification and health care.

Victorian hospital datasets include two additional fields in the standard Indigenous status question: 'Question unable to be asked' and 'Patient refused to answer'. The addition of these fields has enabled the Victorian Department of Health to identify instances of misuse of either field very quickly. This has contributed to the improving rate of Aboriginal identification.

Changes in access to data systems have also meant that more frequent monitoring of Aboriginal hospital separations is possible, and errors can be discovered and rectified.

In January 2009, the VPDC allowed the recording of the Indigenous status of babies as separate from the mother. This has enabled the large proportion of Aboriginal babies born in Victoria who have an Aboriginal father and non-Aboriginal mother to be recorded as Aboriginal. The quality of the data recorded in this dataset has been improving each year.

The Victorian Department of Health and PapScreen Victoria have developed a system for recording and reporting the Aboriginal status of women participating in pap screens. A pilot study has been completed and was successful in training nurses to collect Aboriginal status. The system will be extended to GP providers. The identification of Aboriginal status in all cancer screening systems is being investigated.

Work to encourage GPs to record Aboriginal status has continued. This has been assisted by the use of the Aboriginal health check, Medicare item 715, which requires identification as Aboriginal.

Victoria participated in the audit of hospital inpatient data coordinated by AIHW in 2011. This confirmed the level of identification of Aboriginal and Torres Strait Islander patients in Victorian hospitals and highlighted areas of greater need. The same methodology has been used subsequently to audit individual hospitals.

Data improvement across multiple government departments

The Victorian Aboriginal Child Mortality Study, based at the University of Melbourne, has brought together birth and death information from the VPDC and the RBDM to ascertain the number of Aboriginal babies born between 1988 and 2008, and the number and causes of death for Aboriginal children who died during this period. The linked datasets have also provided an assessment of the coverage of the individual datasets. The Births Report has been released, as has the Deaths Report.

The Overarching Bilateral Indigenous Partnership Data Reform Group has surveyed educational and promotional activity for Aboriginal identification in Victorian datasets. The Data Reform Group has also worked on the development of a Victorian Aboriginal life expectancy estimate.

The Victorian Auditor-General's Office reviewed the access of Aboriginal people to mainstream services in Victoria and recommended improvements in data and reporting, which will be implemented by the relevant departments.

The Victorian Department of Health and Human Services and the Commission for Aboriginal Children and Young People are conducting a project examining the needs of Aboriginal children in out-of-home care, which will include a review of the datasets relevant to these children and their ability to identify Aboriginal children in out-of-home care. All health datasets are included.

The Victorian Department of Health and Human Services Aboriginal health wellbeing and safety evaluation framework provides an Aboriginal-led mechanism for measuring the effectiveness of strategies aimed at addressing the health, wellbeing and safety needs of Aboriginal Victorians experiencing vulnerability. The framework is a transformational initiative designed to build the evaluative capability of Aboriginal organisations and for mainstream organisations to better understand and account for the cultural determinants of Aboriginal health, wellbeing and safety. A key focus is to identify and embed Aboriginal-defined measures of success in the planning and delivery programs and services for Aboriginal children, families and communities.

Western Australia

“Data, evidence and research” are identified as one of the six priority areas in the WA Aboriginal Health and Wellbeing Framework 2015–2030. Under this priority area, a number of strategic activities were identified. These include: improving data and evidence about what works in Aboriginal health; involving Aboriginal people and building capacity of Aboriginal health workforce and communities in the research agenda; ensuring quality data is available for program implementation and evaluation; and implementing strategies to address the under-identification of Aboriginal people.

Data collection

In Western Australia, Aboriginal and Torres Strait Islander status is collected in a range of health data collections, including the Admitted Patient Data Collection, the Emergency Department Data Collection, the Non-admitted Data Collection (which includes data on outpatient care), the Notifiable Disease Data Collection, the WA Health and Wellbeing Surveillance System, the Midwives Data Collection, the Breast Screening Data Collection, the Mental Health Data Collection and the Cancer Registry. It is also stored on ABS Mortality data held by the Western Australian Department of Health (WA Health). The data item that identifies Aboriginal and Torres Strait Islander people is a mandatory part of the data provision specification.

WA Health collects data on Indigenous status in accordance with the ABS Indigenous status question, under the National best practice guidelines for collection of Indigenous status in health datasets. The basis for the question is the national standards set out in the National Health Data Dictionary, Metadata Online Registry (METeOR) and the WA Health Hospital Morbidity Data System Reference Manual. The Reference Manual sets out the rules for collection of Indigenous status for inpatient data.

Data quality assurance and improvement

To improve and maintain the quality of information entering into the hospital morbidity data collection system, each WA Health Service Provider has a Patient Administration System administrator, and a liaison office whose role is to train staff on how to interpret data elements for entry to the system. This includes training staff on how to properly ask the Indigenous status question.

The ongoing refinement of the WA Health Mental Health Data Collection also offers opportunities to enable better identification of Aboriginal people in the Patient administration system that underpins this Mental Health Collection.

WA Health has adopted two items in its Midwives Data Collection, that is smoking during pregnancy and antenatal care. These two data items are available for reporting by Aboriginality. A chapter on Aboriginal mothers and babies is a regular part of WA Health Mothers and Babies Annual Report.

WA Health and the ABS, together with the Telethon Kids Institute conducted a cross agency data linkage and analysis project “Getting Our Story Right” (Christensen et al. 2014) (GOSR). The project explored and developed different methods for deriving Indigenous status from multiple data sources. Using the resources of the WA Data Linkage System, the project examined the impact of these methods on a sample of health and educational outcomes among the Indigenous population.

The study compared various methods of calculating Indigenous status across multiple data sources and made recommendations about the best use of existing information resources as it pertains to measuring the gap in Indigenous disadvantage. Linked data was drawn from collections held by WA Health, WA Department of Education, the RBDM and the Telethon Kids Institute. Representatives from these organisations were consulted and gave their support. The study also received endorsement from the WA Health Human Research Ethics Committee and the Western Australian Aboriginal Health Ethics Committee.

Based on the work of the GOSR project, the WA Health Data Linkage Branch created a Derived Aboriginal and/or Torres Strait Islander Status Flag. A validated algorithm is used to create a Yes/No/Missing flag for a requested cohort of people, using their data as held in one or multiple WA government administrative datasets. Data recipients must note that their project could receive data for an individual where datasets provided report of an Indigenous Status of NO but the Indigenous Status Flag is YES. The Derived Aboriginal and/or Torres Strait Islander Status Flag indicates what status is indicative of a person from all applicable collections or records and therefore may be different to what is reported in a specific record or collection.

WA Health has used the Derived Aboriginal and/or Torres Strait Islander status flag for epidemiological and statistical analysis and reporting. Such a flag is also made available to researchers who have applied to link data via the WA Data Linkage System.

WA Health has also commenced the WA Burden of Disease Study (WABODS) which is a collaborative study with the AIHW. The WABODS aims to create detailed estimates of fatal, non-fatal, and total disease burden for the Western Australian population across over 200 conditions to allow comparisons across regions and between population sub-groups, and includes the calculation of detailed estimates of disease burden for the Western Australian Aboriginal population. The project has ethics approval from the WA Human Research Ethics Committee and the Western Australian Aboriginal Health Ethics Committee.

In addition, the WA Cancer Registry is endeavouring to improve its Indigenous identification through using alternative data sources, specifically the use of data linkages between cancer and other records.

Aboriginal health performance measures

Currently, WA Health monitors rates of Discharge Against Medical Advice (DAMA) via its Performance Policy Framework and Health Service Performance Report, with disaggregation by Aboriginal and non-Aboriginal patient cohorts. During 2019-2020, a new performance indicator measuring the proportion of Aboriginal and non-Aboriginal patients who Did Not Wait or Left at Own Risk from Emergency Departments (EDs) will be introduced. The aim of both indicators is to reduce the incidence of people departing hospitals prior to the completion of their care and to close the current disparities between Aboriginal and non-Aboriginal cohorts. Surveillance of these Aboriginal health performance indicators also enables the Western Australian health system to monitor and improve the related data quality.

References

  • ABS 2017. Census of Population and Housing: Details of Overcount and Undercount, Australia, 2016. ABS cat. no. 2940.0. Canberra: ABS.
  • AIHW (Australian Institute of Health and Welfare) 2010. National best practice guidelines for collecting Indigenous status in health data sets. Cat. no. IHW 29. Canberra: AIHW.
  • AIHW 2013a.The inclusion of Indigenous status on pathology request forms. Cat. no. IHW 103. Canberra: AIHW.
  • AIHW 2013b. Towards better Indigenous health data. Cat. no. IHW 93. Canberra: AIHW.
  • AIHW 2013c. Taking the next steps: identification of Aboriginal and Torres Strait Islander status in general practice. Cat. no. IHW 100. Canberra: AIHW.
  • AIHW & Australian Bureau of Statistics (ABS) 2012. National best practice guidelines for data linkage activities relating to Aboriginal and Torres Strait Islander people. AIHW Cat. No. IHW 74. Canberra: AIHW.
  • Christensen D, Davis G, Draper G, Mitrou F, McKeown S, Lawrence D et al. 2014. Evidence for the use of an algorithm in resolving inconsistent and missing Indigenous status in administrative data collections. Australian Journal of Social Issues49(4):423-43.
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