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Data development

There are well-documented problems with the quality and availability of data about Aboriginal and Torres Strait Islander health issues. These limitations include the quality of 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 by the jurisdictions to provide information on action being undertaken in relation to data development.

Australian Government

The Australian Government is committed to improving the availability of good-quality Aboriginal and Torres Strait Islander health data. Through the National Advisory Group on Aboriginal and Torres Strait Islander Health Information Development (NAGATSIHID), the Australian Government is actively engaged with key stakeholders, state and territory Governments, the ABS and the AIHW to improve the availability of quality Aboriginal and Torres Strait Islander health data. Further, the Health Performance Framework has established priorities for data development linked to policy objectives.

In July 2009, COAG committed to a range of activities to improve the quality of Aboriginal and Torres Strait Islander data, including a Australian Government commitment of $46.4 million over four years to June 2013 under the NIRA (COAG 2008). This work covers the key datasets required for NIRA Indigenous reporting, e.g. mortality, morbidity, perinatal data and population estimates. Jurisdictions have committed to undertaking the work outlined under Schedule F to the NIRA, in liaison with the AIHW and the ABS.

Data development projects already completed

The ABS have made improvements to the Census Indigenous enumeration procedures and expansion of the Census Post-Enumeration Survey.

The AIHW released the National best practice guidelines for collecting Indigenous status in health data sets in April 2010.

The AIHW's National Indigenous Data Improvement Support Centre (NIDISC) has been established to support jurisdictions and service providers to implement the guidelines.

The ABS currently has a 6-yearly cycle for the Indigenous Social Surveys 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 linked 2011 Census records with death registration records to assess the level of Indigenous identification.

The AIHW has finalised reports on the assessment of the quality of Indigenous identification in labour-force data collections, the National Cancer Registry, and the National Diabetes Register.

The AIHW report The inclusion of Indigenous status on pathology request formswas published on 1 November 2013 outlining 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 ABS and AIHW in partnership with jurisdictions developed national best practice guidelines for linking data relating to Indigenous people. 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.

Ongoing data development projects

ABS and AIHW 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 Best Practice Guidelines.

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

The AIHW released the National best practice guidelines for collecting Indigenous status in health data sets (the Guidelines) in April 2010.Under Schedule F of the NIRA jurisdictions undertook to implement the Guidelines across the health sector by December 2012.

To assist states and territories with their efforts to improve Indigenous data collection, the AIHW has provided leadership and ongoing support to service providers. The AIHW established and maintained the National Indigenous Data Improvement Support Centre (NIDISC). The NIDISC provides promotional posters and brochures, training material and phone advice to a range of service providers including hospitals and Medicare Locals.

The AIHW conducted an extensive investigation of Guidelines implementation and published its findings in the Towards better Indigenous health data 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 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. Responsibility for Guidelines implementation in the general practice sector is not clear. As state and territory governments do not control this sector, the work of the Australian Government and the role of non‑government stakeholders are paramount. 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 the Taking the next steps: identification of Aboriginal and Torres Strait Islander status in general practice report in 2013.

The AIHW has advanced the recommendations of the Taking the next steps report through its development of the online Indigenous health check (MBS 715) data tool. This innovative tool draws together 715 MBS billing data and Indigenous population data to show numbers of health checks and usage rates (the proportion of Indigenous people who have had a health check) by quarter and financial year. These are presented at national, jurisdiction, peer group and Medicare Local levels, and the tool displays make it easy to compare numbers and rates across different areas and over time.

AIHW is working with the states and territories in the development of an enhanced Perinatal National Minimum Data Set:

  • Nationally consistent data items on smoking during pregnancy were included in the Perinatal NMDS from 1 July 2010.
  • A data item for the Indigenous status of the baby was added to the Perinatal NMDS from 1 July 2012.
  • A data item on gestational age at first antenatal visit was added to the Perinatal NMDS from 1 July 2010 and a data item on number of antenatal visits will be included in the Perinatal NMDS from 1 July 2013.
  • At their 15 October 2014 meeting, the National Health Information Standards and Statistics Committee (NHISSC) agreed to recommend to National Health Information and Performance Principal Committee (NHIPPC) the addition of Indications for induction of labour to the Perinatal Data Set Specification (DSS) for 2015–16. On 13 November NHIPPC members endorsed the implementation of the new and revised data elements in the Perinatal DSS from 1 July 2015. Some states and territories will progressively implement indicators for induction of labour in their perinatal data collections from 1 July 2015 with the intention of adding it to the Perinatal NMDS from 2016.
  • Data development has been deferred for 'alcohol consumption in pregnancy' due to the jurisdictions' inability to implement a nationally standardised data item.

As part of the NIRA, the COAG agreed that the Department of Health (formerly Department of Health and Ageing), in partnership with the state and territory health departments and in collaboration with the AIHW, would develop a set of national Key Performance Indicators for Indigenous specific primary health care services. The AIHW receives funding from the Department of Health to collect, manage and report on the nKPIs.

The scope of services providing nKPI data has increased over time. In the trial collection in February 2012, only services participating in the Australian Government's Healthy for Life programme submitted data (about 80 services). In January 2013, the scope expanded to include all Indigenous primary health services funded by the Australian Government. Data from over 200 organisations are now collected every six months.

The nKPIs are designed to enable monitoring of the contribution of this part of the health system in achieving Closing the Gap targets. They can also be used to help improve the delivery of primary health care for Aboriginal and Torres Strait Islander people and to improve health outcomes.

The nKPIs focus on health service specific outputs and clinical outcomes. Twenty-four indicators were given in-principle endorsement by AHMAC in early 2011. Implementation and collection of these indicators has been staged over a three year period, with 11 indicators implemented in 2011–12 and further eight in 2012–13.

The ABS continues to conduct various engagement and education activities, liaise with government departments about best practice in Indigenous data collection, and conduct data linkage programmes to assess and improve Indigenous identification status.

The ABS continues to use an Indigenous Community Engagement Strategy to improve the collection and dissemination of statistics, in partnership with Aboriginal and Torres Strait Islander communities. Through the use of Indigenous Engagement Managers in ABS offices across Australia, the ABS is building relationships with communities to improve the quality and relevance of Aboriginal and Torres Strait Islander statistics.

More information on ABS key directions in Aboriginal and Torres Strait Islander statistics can be obtained in the ABS Annual Report, 2012–13 cat. no. 1001.0 (ABS 2013a).

The AIHW in collaboration with the Australian Institute of Family Studies delivered the Closing the Gap Clearinghouse. The Clearinghouse is an online collection of research and evaluation evidence on what works to overcome Indigenous disadvantage, focusing on 7 subject areas: early childhood; schooling; health; economic participation; healthy homes; safe communities; and governance and leadership. It aims to support policy-makers and service providers involved in overcoming Indigenous disadvantage by providing access to and synthesising the evidence on particular topics.

The contract for the Clearinghouse ended in June 2014. All resources and publications currently on the website will continue to be publicly available. However, once all commissioned issues papers and resource sheets have been released (towards the end of 2014), no new material will be added to the website.

The AIHW is undertaking a project to develop an Enhanced Mortality Database to improve information on Indigenous status on the registered deaths data set by linking it to several additional data sources that contain information on Aboriginal and Torres Strait Islander deaths and Indigenous identification. The enhanced data are expected to enable more accurate estimates of Aboriginal and Torres Strait Islander mortality, including life expectancy, to be made. A report on the results of the first phase of the project which linked death registration data to hospital data, perinatal data and residential aged care data for the period 2001 to 2006 was published by the AIHW in July 2012—An enhanced mortality database for estimating Indigenous life expectancy: a feasibility study.

Two more phases of the Enhanced Mortality Database project are currently in progress. In Phase 3, the AIHW is linking the Enhanced Mortality Database with the NSW Native Title Services Corporation Database to validate the quality of the derived Indigenous status variable on the Enhanced Mortality Database. In Phase 4, the Enhanced Mortality Database is being extended to cover all deaths from 2006, with data linkage and data analysis taking place as new deaths data become available. Phase 4 is also exploring the use of additional algorithms other than the 'ever Indigenous' algorithm alone, to derive enhanced Indigenous status from the linked data.

The AIHW Linked Perinatal, Births, Deaths Dataset Project will create a national ongoing linked perinatal, birth and death dataset for the purposes of 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 Indigenous status. Currently, however, there is no way to link information on antenatal characteristics/behaviours with birth outcomes, and birth outcomes to infant and child deaths and so we cannot analyse these factors simultaneously. The dataset will be 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 cohort of births from 2003 to 2015. Work on this project commenced in May 2013. The project has applied for, and received, ethics approval from the AIHW Ethics Committee Ethics approval for the project has also been received from Health Research Ethics Committees in Victoria, SA, Tasmania, the NT and the ACT, while agreements have also been reached with the Registrars in all jurisdictions, and with the perinatal data custodians of NSW, Victoria, SA and Tasmania for the supply of perinatal data for the project.

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 and 2012. The collection provides information on the health of people entering prison (prison entrants), health conditions managed at prison clinics, medications administered at the clinics and operations of the clinics. In 2012, indicators relating to the health of people about to be released from prison (prison dischargees) and deaths post-release from prison were added to the collection. 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. In 2015, the data collection will be conducted in an electronic format for the first time.

The Australian Capital Territory

The ACT Department of Health continues to undertake a number of data quality improvement activities regarding Aboriginal and Torres Strait Islander data. These activities include:

  • An information and education strategy encouraging ACT Government Health Directorate staff to identify Aboriginal and Torres Strait Islander clients and patients to identify, based on the AIHW's 'One simple questions could help you close the gap' campaign is being implemented across the Directorate. Information sessions together with posters and pamphlets have been delivered across both hospitals and in the community health space. The ACT Patient Administration System has been upgraded to ensure the Aboriginal and Torres Strait Islander identification question is a mandatory field. All pathology forms and all out patient collection stations within the hospital now collect the information. The Epidemiology Branch will monitor improvements in identification data and report outcomes.
  • ACT Pathology project. The under-identification of Aboriginal and Torres Strait Islander patients in administrative data leads to a biased estimation of the true use of health services, which impacts on estimates of health expenditures and affects accurate planning and delivery of health services to Aboriginal and Torres Strait Islander peoples. ACT Health has entered an Aboriginal and Torres Strait Islander identifier as a mandatory field on ACT Pathology forms. Training has been conducted with Pathology staff on how best to ask clients to identify and a handout and brochure that encourages clients to identify has been made available in waiting areas. Improving identification on pathology forms has flow-on effects of improving identification in other data sets, e.g. ACT Cancer Registry, Communicable Disease Register and hospital data.
  • ACT Health Patient Master Index (PMI) Hub project. To improve quality of Aboriginal and Torres Strait Islander identification in key vitals and administrative data sets, ACT Health has commenced collection of the Aboriginal and Torres Strait Islander identifier within the PMI, which will enable the identification status of a person to be shared throughout ACT Health IT systems. ACT Health is working to ensure that adherence to standards ensuring ethical and privacy considerations are taken into account.

New South Wales

Under the NIRA, NSW has committed to data quality improvement activities that will improve the accuracy and reliability of Closing the Gap reporting.

A summary of key activities include:

  • NSW Health has adopted the standard ABS Indigenous status question and recording categories, and has issued this revision to the NSW Health system to mandate that the standard question is incorporated into all data collection forms and information systems for key data sets.
  • NSW Health has employed a Project Officer Aboriginal Data Quality to the Health Systems Information & Performance Reporting Branch. The position supports the development of policies, protocols and strategies to enhance the quality of health data pertaining to the Aboriginal population of NSW. The position is responsible for routine data profiling of data collections to identify data quality issues. It is also responsible for supporting the State-wide implementation of data quality processes and programmes and will support the development of data collection standards.
  • Respecting the Difference: An Aboriginal Cultural Training Framework for NSW Health outlines a mandatory cultural training framework for all staff working in health, and includes information on collecting Indigenous status information.
  • The NSW Health Hospitals Identification Project will be completed and evaluated during 2014. The project aims to improve the cultural competency of services provided to Aboriginal people in NSW Hospitals, by developing a framework based on continuing quality improvement processes. The effectiveness of the framework in improving cultural competency will be assessed by improved Aboriginal identification in routinely collected data sets.
  • NSW Health has completed a project titled 'Improved Reporting of Aboriginal and Torres Strait Islander peoples on population datasets using record linkage'. The project: (1) developed methods for improving reporting of Aboriginal and Torres Strait Islander peoples on population datasets using record linkage; (2) described the improvements in reporting achieved by record linkage; and (3) explored the impact of any changes in reporting due to record linkage on a selection of indicators of health status and health service utilisation. The method is being used to monitor the level of reporting of Aboriginal people on selected administrative datasets.
  • Local Health Districts (LHDs) are implementing initiatives to raise awareness about the importance of identifying as an Aboriginal person. The programmes are designed and implemented locally. An example includes:
  • The Mid-North Coast LHD has implemented the MTEC 'Closing the Gap'—Innovation in Emergency Departments project that aims to create a better patient journey for Aboriginal people using the hospital and to reduce the number of 'Did Not Wait' patients. It is focused on the Emergency Department (ED) environment, training of staff on identification, getting clinicians involved in cultural awareness programmes, and addressing barriers that prevent people from waiting. Various strategies are included e.g. amusements for children, information on why identification is important, resources, posters including a triage poster, DVD, and cultural awareness information. The District has also established a new 'ALERT' system, where the Aboriginal Liaison Officer receives a message that an Aboriginal patient is in ED. The programme has shown a reduction of 'Did Not Wait' patients in ED by about 50%.

The Northern Territory

The NT Department of Health (DoH) has rolled out a number of ehealth initiatives across the NT that will have major implications for the use and collection of data. These improvements assist in the provision of seamless care for health consumers. Brief outlines for these initiatives are as follows:

My eHealth Record service (rebranded from Shared Electronic Health Record)

As at 30 June 2014, the My eHealth Record service ensured access to important health information was available with consent 24 hours per day, 7 days per week for 65,000 patients (up from 60,700 as at 30 June 2013). These patients include an estimated 78% of Aboriginal and Torres Strait Islander peoples living in rural and remote communities in the NT at any of the 137 participating health centres. These health centres include correctional facilities and public hospitals in the NT, Aboriginal Community Controlled Health Organisations (ACCHOs) in SA and public hospitals in the Kimberley Region of WA. During 2013–14, My eHealth Record was used by over 1,000 authorised clinical users each month, sending an average of 166,900 health-care event summaries (up from 145,400 in 2012–13) and accessing on an average of 48,800 occasions (up from 35,900 in 2012–13), as part of providing health-care. My eHealth Record has proved to be of major benefit for mobile populations, and people from rural and remote areas accessing services in regional towns or cities, by ensuring up-to-date information is easily accessible at the point of care, whether that is at a remote health centre operated by DoH or an ACCHO, or at a public hospital in a regional or major urban centre. In relation to this population, My eHealth Record has achieved 100% effective coverage of all health-care providers delivering services to people in rural and remote areas of the NT.

Secure Electronic Messaging Service

Secure Electronic Messaging Service (SEMS) ensures that specific information regarding clinical referrals can be communicated electronically securely between service providers. This assists in a seamless care in relation to managing transition from GPs/health centres to appointments with specialists or hospital outpatient clinics. Electronic medications and discharge summary information is forwarded by hospitals to communities of residence, so that information is available locally for consumers on their return to country. In 2011–12, the Continuity of Care project was completed, upgrading the messaging solutions used by DoH and ACCHOs in the NT to compliance with national specifications approved by the National eHealth Transition Authority (i.e. the Australian Technical Specification for Secure Message Delivery—SMD ATS 5822-2010). In April 2013, DoH commenced using the National Health Services Directory as its electronic address book for secure messaging and in early 2014 a project was initiated to improve outpatient referral and appointment management at Alice Springs Hospital with the aim of all referrals being undertaken electronically.

Primary Care Information System

In 2009–10, DoH completed the rollout of the Primary Care Information System (PCIS) to the 22 remaining remote health centres, making a total of 54 Departmental health centres transitioned to using fully electronic health records (eliminating the use of paper records) integrated with the eHealthNT MEHR service and Secure Messaging Delivery for eReferrals and eDischarge. As at 31 December 2010, PCIS had expanded its coverage to include health services in the two NT Prisons, three Juvenile Detention facilities, and two Living Skills Units. Between December 2011 and March 2012 PCIS was introduced into Police Watch Houses in Darwin, Katherine and Alice Springs. PCIS includes a number of tools to assist in patient care, e.g. automatic alerts for service providers about patients to be recalled for follow-up treatments/services, providing a technological advantage to making service delivery easier.

In 2013–14, PCIS was implemented into the DoH Alcohol Mandatory Treatment Facilities in Central Australia with those in the Top End to follow early in 2014–15. In 2013–14, PCIS was also implemented in Renal Services with the Chronic Disease Nurses in the Top End and Central Australia being the first users in December 2013, following by the Peritoneal Dialysis Unit following in April 2014.

The Pen Computer Systems Clinical Audit Tool (Pen CAT) has been integrated with PCIS data in the DoH data warehouse. The Pen Cat is used to analyse and report on clinical information from primary health care systems. It translates data into statistical and graphical information that is easy to understand and action. This allows practitioners to assess and improve both the quality and completeness of patient information. This benefits a primary health care practice by assisting with ongoing accreditation and providing opportunities to grow practice income. The emphasis of the tool is to enable practice staff to take specific action to improve patient coverage in chronic disease management and prevention. Other benefits of the Pen CAT include:

  • targeting patients with particular needs
  • targeting patients with specific health risk profiles
  • improved compliance with statistical data collection requirements
  • extracting data to meet a specific need
  • meeting statutory reporting requirements.

Statistics required for the Australian Primary Care Collaboratives (APCC) Programme and the Commonwealth Department of Health Future Directions Key Performance Indicators for Divisions are able to be easily identified and collated by the Pen CAT.

The PCIS Team works closely with clinical reference groups and programme areas to continually develop new and update existing care plans to reflect best practice standards and CARPA protocols. PCIS facilitates extensive coded clinical data collection for each service episode with the capacity to capture all required national Aboriginal and Torres Strait Islander health performance indicator data. These data sets are used to improve the delivery of primary health care services by supporting continuous quality improvement (CQI) activity among service providers. These data sets also support policy and planning at the national and state/territory level by monitoring progress and highlighting areas for improvement.

Aboriginal Health Key Performance Indicator (AHKPI) project

Initiated by the Aboriginal Health Forum (AHF) to develop a structure for collection and reporting of 19 agreed KPIs that cover both DoH Remote Health Centres and ACCHOs. The project is managed co-operatively by DoH, the Commonwealth Department of Health and Aboriginal Medical Services Alliance Northern Territory (AMSANT) under the auspices of the AHF Banner and maintains the NT Aboriginal Health KPI collection covering the government and non‑government sectors to improve the quality and robustness of data for use in service planning and management through continuous quality improvement.

The goal of the system is to contribute to improving primary health care services for Aboriginal Australians in the NT by building capacity at the service level and the system level to collect, analyse and interpret data that will:

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

Processes for data collection from the various organisations information systems have been defined and developed, and data delivery from all NT community health centres commenced on 1 July 2009. Reports are produced bi-annually, six weeks after end-of-financial and calendar year. The AHKPI definitions go through continuous cycles of quality improvement with approved changes to the existing NT AHKPI definitions, or new KPIs completed twice a year.

East Arnhem Health Services Delivery Area (EAHSDA) Communicare Project

Between August 2011 and January 2012 the Commonwealth and NT Departments of Health jointly funded the implementation of Communicare (now known as HealthConnex) into the four EAHSDA centres of Yirrkala, Ramingining, Milingimbi and Gapuwiyak. Yirrkala health centre transitioned to Miwatj Aboriginal Health 1 July 2012 and remains on the DoH Central East Arnhem Database in support of a central East Arnhem database and the spirit of regionalisation.

Telehealth NT

In 2010–11 the DoH commenced the Health eTowns Program jointly funded with the Australian Government under the Digital Regions Initiative. The Health eTowns Program aimed to deliver improvements in health and education outcomes for predominantly Indigenous populations living in remote communities across the Northern Territory and the Kimberley Region. Through the Program the following initiatives have been implemented:

  • TelehealthNT—a comprehensive telehealth network with over 50 telehealth-enabled health centres in major cities and towns, regional areas and remote locations, enabling clinical and diagnostic services to be delivered remotely, connecting NT Public Hospitals, remote primary care health centres, interstate tertiary hospitals and private specialists, and providing a range of telehealth services, including:
    • tele-burns clinics and urgent reviews
    • pre-admission clinics
    • tele-oncology patient reviews
    • tele-cardiology
    • trauma and critical care support
    • post-surgical review clinics.
  • Internet Protocol Patient Monitors into emergency rooms and resuscitation areas enabling specialists to provide advice to assist clinicians in dealing with emergencies.
  • A high-speed fibre, data communications network in 17 Territory Growth Towns.
  • An eLearning Framework and system to support online training and professional development activities as part of continuing workforce development.


Burden of Disease and Injury in Aboriginal and Torres Strait Islander People in Queensland

The Queensland Government has a bipartisan commitment to closing the gap in health status and life expectancy between Aboriginal and Torres Strait Islander peoples and non‑Indigenous Australians and much work has been undertaken on this path.

In recent years in Queensland, significant effort has been directed to quantify and understand the characteristics of the health gap between Aboriginal and Torres Strait Islander peoples and other Australians. Measuring improvement in health outcomes against established benchmarks and better targeting health services and interventions have been the primary objectives of this work.

The first complete national assessment of the burden of disease in the Aboriginal and Torres Strait Islander population was released in 2007 (reference year 2003) (Vos et al. 2007). Equivalent results have been generated for Queensland by combining burden of disease analysis for whole-of-Queensland (Qld Health et al. 2008a; Qld Health 2008b) with the results of the national Indigenous study (Vos et al. 2007) to provide 2003 and 2006 broad estimates for Aboriginal and Torres Strait Islander Queenslanders (Qld Health et al. 2008a; Qld Health et al. 2008b).

The 2008 Queensland Government commitment to close the gap in health status and life expectancy between Aboriginal and Torres Strait Islander peoples and non‑Indigenous Queenslanders (Queensland Government, 2008), along with the recent development of experimental life tables for Indigenous Queenslanders by remoteness for 2005–2007 (unpublished), provided the impetus to refresh the burden of disease and injury estimates for Queensland's Aboriginal and Torres Strait Islander peoples.

In 2012, Queensland Health undertook a refresh of burden of disease and injury results specifically for Queensland's Aboriginal and Torres Strait Islander peoples (reference year 2007). This study is the first comprehensive description of the burden of disease in Queensland's Aboriginal and Torres Strait Islander population. The results aid prioritisation of health programmes, services and policies by highlighting areas with the largest health loss and those with the largest potential for health gain.

This study also acts as a baseline for an updated study for Queensland that will include small area estimates (reference year 2011—to be released in 2015). The production of ongoing burden of disease and injury estimates will allow improved understanding of changes in the disease and injury burden, thus guiding future investment for improving the health of Aboriginal and Torres Strait Islander peoples.

Quantifying the cost of excess hospitalisations for Indigenous Queenslanders

Aboriginal and Torres Strait Islander people in Queensland have higher morbidity and mortality rates compared with the non‑Indigenous population. Higher rates of morbidity and mortality are present and have been since an Indigenous identifier has been included in Queensland morbidity and mortality data collections in the mid-1990s.

Significant work from researchers both working outside Queensland Health, and from public and population health staff from within Queensland Health, has gone into quantifying the health gap for Aboriginal and Torres Strait Islander peoples in Queensland using morbidity and mortality data sets. This has included publicly accessible research that clearly documents morbidity and mortality differentials for Aboriginal and Torres Strait Islander peoples across a wide variety of conditions including chronic disease, namely cardiovascular disease, chronic respiratory disease, Type 2 diabetes, mental illness, accident and injury and child and maternal health.

However, less work has been undertaken around quantifying the financial impact of the burden of disease for Aboriginal and Torres Strait Islander peoples. Queensland Health is currently undertaking a project that looks at estimating the cost of excess hospital separations for Aboriginal and Torres Strait Islander peoples in Queensland (who are hospitalised at almost twice the rate of non‑Indigenous Australians).

Due to differences in casemix cost weights, the key drivers of the health gap (mental disorders, cardiovascular disease, diabetes mellitus, chronic respiratory disease and cancer) may not necessarily equal the key drivers of excess hospital cost, hence the need to understand cost implications of excess hospitalisations.

The key aim of this work is to support the focussed purchasing of activity which addresses both the health gap and the key drivers of excess cost to ensure that Department of Health in Queensland is in a position where it could significantly reduce health disadvantage for Aboriginal and Torres Strait Islander people.

The analysis will also contribute to meeting the two key COAG targets of closing the gap in life expectancy by 2033 and halving the gap in child mortality by 2018, as well as reducing the financial impact of the health gap on the system.

Indigenous identification

In 2010–2011 Queensland Health conducted a $1.25 million project aiming to improve the identification of Aboriginal and Torres Strait Islander people accessing health services. A central project team developed a suite of resources and partnered with the then health service districts (now Hospital and Health Services (HHSs) to investigate and understand local barriers to identification, and undertake targeted approaches to improvement. The overall identification rate in admitted patient data at the commencement of the project was 83.4%; following the project the identification rate improved to 88.5% (by 2013–14).

The Department of Health has been using the learnings gained from the project to continue to work with individual HHSs to help them to improve the identification of Aboriginal and Torres Strait Islander people accessing their health services.

South Australia

Improving Aboriginal and Torres Strait Islander Identification

The ABS was funded through SA Health's Council of Australian Governments investment to develop a training package for recording the 'Indigenous identifier' in health data collections; as well as training staff who manage data and/or perform data entry about the importance of collecting the Indigenous identifier information; the correct way of asking the standard question and recording the response; and strategies for dealing with special circumstances, such as determining the Indigenous status of children and patients who are unconscious. The training targeted frontline staff working across hospital sites in metropolitan Adelaide and regional communities, as well as various mainstream primary care services throughout SA. This training approach was informed by the AIHW's Best Practice Guidelines for Collecting Indigenous Status. The first state-wide training programme concluded in late 2011. Over 430 frontline staff attended training sessions held in 40 locations spread through the state.

SA Health has also indicated that it supports feeding this initiative into the AIHW and ABS National Data Linkage Project on Indigenous identification. SA Health continues to operate a case mix payment system, which applies a 30% loading to hospital separations of Aboriginal and Torres Strait Islander peoples, and this provides an incentive for improved Indigenous identification.

SA Pathology (trading as IMVS Pathology) provides a comprehensive diagnostic pathology service delivered via a network of 18 state-wide laboratories and more than 71 patient collection centres. It is the sole provider of pathology in the public hospital sector and a major provider to the private GP and specialist market. The SA Department for Health and Ageing and SA Pathology have recently completed the first part of the project to address 'Aboriginal Identification Requirements in Pathology Systems'.

The initial emphasis of the project has been to ensure the Indigenous Identifier is included on pathology forms. This involved extensive consultation with SA Pathology providers and other jurisdictional providers. This enabled information sharing and identifying lessons learnt from other jurisdictions implementing similar projects, and resulted in the Indigenous Identifier being introduced into pathology forms as well as metropolitan-based hospital systems. While pathology forms have been addressed, a greater emphasis is now on linking the Indigenous identification data to an IT solution, as this is a significant gap requiring attention. The procurement of SA Pathology's new Laboratory Information System, which aims to be implemented from early 2016, is a key IT solution that will integrate the Indigenous Identifier information, and enable the appropriate use of captured data.

Further project work is being undertaken to review the downstream impacts on affected registries, which include input and advice from ACCHOs, GP Clinics, Medicare Locals and Well Women's Screening programmes. SA Health is determining how best to ensure systems provide consistent and continuous transfer of Aboriginal identification data across SA Health. Additional systems training will be required to support staff to collect information.

In 2007, SA participated in the National Audit of Indigenous Identification in Public Hospitals project, coordinated by the AIHW. Surveys were conducted in metropolitan and regional hospitals across SA, and the results contributed to reports from other jurisdictions to calculate adjustment factors to be applied to hospital separations data for Expenditure on Health reporting. A follow-up audit was conducted in 2011. The audit independently verified the Indigenous status of a sample of patients in selected metropolitan and country hospitals through face-to-face interviews. The results were matched against data held in hospital systems, to assess the quality of identification by hospital staff. More than 1,250 patient interviews were conducted during the audit. An estimated 91% of Indigenous patients were correctly identified, an increase of 4 percentage points compared with the 2007 audit. SA's completeness rate of 91% was the third highest nationally, behind the NT and WA. SA was only one of four state/territories to report an improvement in the identification of Indigenous people between the two audits.

Aboriginal and Torres Strait Islander Life Expectancy Measures

The SA Strategic Plan tracks improvements in key outcomes over time. Life expectancy for Aboriginal South Australians continues to be one of these key outcomes. SA Health produces a life expectancy estimate for SA, in the absence of the AIHW and ABS producing an estimate.

Data sets

Having identified the need for improvements in the way that the health sector describes and measures primary health care activities, SA has established an Out-of-Hospital Services Minimum Data Set, which includes the National Data Dictionary definition of 'Indigenous status', represents the agreed core elements that are collected for describing out-of-hospital care services in SA. A central repository of out-of-hospital services data has been operational for several years covering: community health, community mental health, public dental services, drug and alcohol services, child and family services, district nursing services and palliative care. One use is the measurement of the use of the above services by Aboriginal and Torres Strait Islander peoples.

SA has recently established a patient level collection on outpatient department services. The collection includes the Indigenous Status data item as per the national standard.

Cancer Data and Aboriginal Disparities (CanDAD)

The University of South Australia; South Australian Health and Medical Research Institute (SAHMRI); Aboriginal Health Council of South Australia; Cancer Council SA; Beat Cancer Project; SA NT DataLink; and SA Health are partnering in research that addresses the related issues of CanDAD. Governance for this important initiative is led by Professor Alex Brown, a prominent Aboriginal health researcher, Professor David Roder, an eminent cancer epidemiologist, and an Aboriginal Community Reference Group who are resolved that the data be used for health and health-system improvement.

CanDAD has two components, the first of which is the Advanced Cancer Data System Pilot (ACaDS). ACaDS seeks to develop an integrated, comprehensive cancer monitoring system with a particular focus on Aboriginal people in SA. This brings together cancer registry, hospital, radiotherapy, clinical and screening data to comprehensively monitor cancer trends, cancer management and survival. In collaboration with AIHW the integration of PBS data from the Commonwealth is also being sought.

Uniquely, CanDAD is also striving to incorporate Aboriginal patients' experiences with cancer and cancer services to guide continuous service improvement, community engagement, advocacy and outcomes research, providing data infrastructure for health services, population research, and for training Aboriginal (and non‑Aboriginal) researchers.

The purposeful relating of accurate registry and administrative data alongside narratives of Aboriginal people with cancer will facilitate assessment of existing service quality and appropriateness, secular trends in cancer risk, burden and determinants will highlight areas of immediate need and provide a robust system for performance monitoring and evaluation. Even at an early stage in its course, CanDAD is providing Aboriginal specific input to the developing Statewide Cancer Control Plan 2016–2020.

The Aboriginal Health Landscape: Identifying and monitoring Aboriginal health disparities in South Australia

The Aboriginal Health Landscape is a population health initiative funded by the Wardliparingga Aboriginal Research Unit of SAHMRI. The aim of Landscape is to provide and report on health-related risk factor prevalence, health outcomes and social determinants of health of Aboriginal people compared with non‑Aboriginal people at small area levels of geography that combined comprise the state of SA. Recent reports on health outcomes and the social determinants of health for Aboriginal people in SA, present only state or regional level information. Information related to more localised areas may be more meaningful and useful to local needs.

Broad questions:

  • What is the demographic profile of Aboriginal people within each cluster and where, within each cluster, are health services located relative to where people live?
  • Are there disparities in health status and outcomes, social determinants of health and burden of disease in the Aboriginal population compared with the non‑Aboriginal population in SA, between clusters?
  • Are there disparities in health status and outcomes, social determinants of health and burden of disease in the Aboriginal population compared with the non‑Aboriginal population in SA, within clusters?

This piece of work will provide an up-to-date baseline health profile so we can collaboratively target and monitor our efforts in service provision, research, and policy settings. The information would be available to assist Aboriginal communities, government and non‑government service providers with:

  • setting targets for better health outcomes in local areas
  • determining funding priorities for a fairer distribution of health programmes
  • advising partners and responsible organisations on gaps to target their efforts
  • prioritising health and health-related research based on health needs and gaps
  • advocating for health improvements in an informed way, by Aboriginal communities and organisations on behalf of Aboriginal communities
  • fostering informed debate on the work needed to achieve Aboriginal health equity
  • informing policy
  • monitoring and reporting against targets.

It will also assist communities and organisations with determining research priorities.

An Advisory Group will govern the Landscape project. It will comprise of Aboriginal people in SA who can provide advice and guidance on what and how health information is reported and interpreted from a health service, local community or local government perspective. A Technical Panel will be formed to provide advice and guidance on technical aspects of data analysis and reporting for the Landscape project. Both will be convened prior to 2015 and data custodian representation will be sought from SA Health.

Twenty individual Landscapes have been defined based on where Aboriginal and non‑Aboriginal people in SA live. Each Landscape has between 1,000–2,000 Aboriginal residents, as identified in the 2011 census. Several custodians in SA Health have provided data and negotiations are continuing and will commence with additional custodians.

Data sharing

The Aboriginal Health Council of South Australia (AHCSA) Inc. has been funded since 2010 for two data sharing initiatives under SA Health's COAG investment: the Enhancement of Information and Management in the Aboriginal Community Controlled Health Sector in SA; and the Audit and Best Practice for Chronic Disease (ABCD) project (funded since 2011). AHCSA is the peak body for Aboriginal health in SA representing Aboriginal Community Controlled Health and Substance Misuse Organisations and Aboriginal Health Advisory Committees at a state and national level.

The Enhancement of Information and Management in the Aboriginal Community Controlled Health Sector in SA was initially used to develop a set of standard Patient Information Management System procedures and templates across ACCHOs to achieve standardised and consistency of data. This project included the investigation and implementation of methods for cross-sectoral data sharing between the ACCH Sector.

This programme continued to receive further funding in 2013–2014 and 2014–2016 and specifically targets patient information systems at the local health service level to lead to better patient outcomes. The programme will continue to provide health information support to the AHCSA Public Health and Primary Health Care programmes with implementation of processes relating to PIMS across the ACCH Sector to enable continuous quality improvement and programme evaluation. AHCSA will continue to advise ACCHOs on how to best optimise their PIMS supportive of clinical governance, including AGPAL Accreditation, reporting obligations, accessing Medicare revenue, quality improvement initiatives and aspects of health service management.

Some of the Key Performance Indicators include:

  • support for the development of Health Information Management Systems in the Aboriginal Community-Controlled Sector through provision of orientation and training sessions for ACCH Sector staff
  • support a consistent approach to health information management in terms of building capacity across the health system to provide comprehensive information management systems to contribute to improved Aboriginal health outcomes
  • contribute to the development of a state wide Aboriginal health information initiative to inform cross sectoral Aboriginal health planning and priority setting.
  • The ABCD project was funded to enhance the capacity of AHCSA to support the ACCHOs participating in the ABCD National Research Partnership. The funding worked to achieve the following:
  • building the capacity to provide services, including the acquisition of the One21Seventy tool for ABCD auditing
  • facilitation of ABCD audit training to ACCHOs staff.

The ABCD project was initially funded from 2011–2013 then 2013–2014 and funding ceased from SA Health although the National Research Partnership has continued.

ABCD NRP background

Over the past two decades there has been growing use of continuous quality improvement (CQI) initiatives within Australian Aboriginal and Torres Strait Islander primary health care with the aim of improving the quality of care and improving health outcomes.

Fifteen SA primary health care services participated in the ABCD National Research Partnership (2010–2014), and supported to implement a CQI initiative and to participate in a regionally relevant research project that supports the process of embedding CQI in every day practice. Since its inception (2011), the SA project was set up to conduct research around local CQI implementation activities. A regional research project emerged from these initial activities with the participating primary health care services that aimed to understand the barriers and enablers to CQI to identify strategies to strengthen its effectiveness in the South Australian setting.


The collection of Indigenous status is mandatory in core Tasmanian health data collections such as admitted, non-admitted and perinatal data collections. Notwithstanding this, there is room for improvement and Tasmanian Government agencies are working with Australian Government agencies to improve Indigenous identification in key administrative datasets. While this work is focusing on hospital and deaths administrative data, it will also address improvements to a broad range of data collections. Implementation of the Best Practice Guidelines for the collection of Indigenous status in health data sets forms part of this body of work.

The Department of Health and Human Services has employed an Aboriginal Health Development Officer. This position sits within the Aboriginal Health Unit in Population Health Priorities. One of the requirements of this position is to develop and deliver Cultural Safety training. One component of this training package focuses on improving the collection of Indigenous data throughout the Agency. This training package has been successfully delivered since June 2006.


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. Aboriginal identification is also collected through the Alcohol and Drug Information System (ADIS), infectious diseases (PHESS), aged care (HACC and ACAS) 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.

Measures to improve data

Improving Care for Aboriginal and Torres Strait Islander Patients (ICAP) programme includes 30% case-mix co-payment to hospitals for acute, sub-acute and mental health patients identified as Aboriginal. The programme 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 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 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 Department of 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.

Western Australia

In WA, 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 outpatient care data collection, the Notifiable Disease Data Collection, the WA Health and Well Being Surveillance System, the Midwives Data Collection, the Breast screening Data Collection, the Mental health Information System and the Cancer Registry. It is also stored on ABS Mortality data held by the Department of Health.

The WA Non‑admitted State-wide Data Collection is being expanded to capture missing activity. The data item that identifies Aboriginal and Torres Strait Islander people is a mandatory part of the data provision specification.

WA Health is also planning to introduce a chapter on Aboriginal mothers and babies in its WA Mothers and Babies Annual Report.

The Western Australian Department of Health (WA Health) collects data on Indigenous status in accordance with the ABS Indigenous status question. The basis for the question is the national standard set out in the National Health Data Dictionary, Metadata Online Registry (METeOR) and the WA Health Hospital Morbidity Data System Reference Manual.

The WA Health Hospital Morbidity Data System Reference Manual, which sets out the rules for collection of inpatient data, states the following:

  • Indigenous identification is extremely important in health data collections throughout Australia. It is used not only to direct funds into Aboriginal medical programs, but also to identify causes of perinatal and adult mortality within the Aboriginal population.
  • There are three components to this definition: descent, self-identification and community acceptance. All three should be satisfied for a person to be Aboriginal. However, it is not possible to collect proof of descent or community acceptance in the hospital setting. If a person identifies himself or herself as Aboriginal, then assign the most appropriate code (1-3):
  • The following question must be asked of all patients:
    • 'Are you of Aboriginal or Torres Strait Islander origin?'
    • In circumstances where it is impossible to ask the patient directly, such as in the case of death or lack of consciousness, the question should be asked of a close relative or friend if available to do so.
    • If the Admission Clerk is unable to speak directly with the patient, the ward staff should ask the patient the above question, or ask a close relative or friend if the patient is not able to provide the information.

Each health service will have a Patient Administration System administrator, and a liaison officer whose role it is to train staff in how to interpret data elements for entry to the system. This includes training staff on how to properly answer the Indigenous status questions.

WA Health has already adopted the two items (smoking during pregnancy and antenatal care) and they will be ready to report by 2016.

WA Health has developed a communication strategy to raise awareness of health staff and the Indigenous community about the importance of Indigenous status identification. Pamphlets and posters consistent with the Indigenous status information have been developed and will be trialled in one of the four area health services. It will then be made available across WA.