Data gaps
The Health Plan framework, like the National Agreement on Closing the Gap, is breaking new ground with the inclusion of priority reforms and noting the importance of cultural and social determinants of health. There are no existing definitions or measures for some of the objectives outlined in the Health Plan framework, particularly for the following priority areas:
1. Genuine and shared decision making and partnerships
3. Workforce
6. Social and emotional wellbeing and trauma-aware, healing informed approaches
8. Identify and eliminate racism
10. Mental health and suicide prevention
12. Shared access to data and information at a regional level.
Table A1 available in the Data Tables summarises the availability of data for each priority area of the Health Plan. The 5 priority areas listed above, and those priority areas where further consideration is needed on how some objectives should be measured, or where there is no clear data source, have been noted.
For more detailed information on the availability of data relating to objectives associated with each priority, as well as potential data sources and measures, see Data Tables: A3 in the Data Tables.
Existing qualitative data sources considered for this review may provide proxy information related to some objectives. A different approach may provide direct insights for these objectives, in addition to the use of quantitative indicators. For example, with agreed definitions, counts of activities could be reported. Qualitative information and case studies on programs, services, or research can provide insights in the absence of quantitative data.
The Aboriginal and Torres Strait Islander HPF reporting provides an example of how insights can be gained by combining quantitative indicators with qualitative information, including case studies and a summary of related research.
Data gaps and development of data linkage assets
Considerable progress has been made over recent years to fill data gaps through the development of data linkage systems. Four key initiatives have potential to provide insights for the Health Plan objectives: the National Health Data Hub (NHDH), the Person Level Integrated Data Asset (PLIDA).the National Disability Data Asset (NDDA) and the Australian National Data Integration Infrastructure (ANDII). More information on these initiatives is available in Australia’s health data landscape (AIHW 2024).
National Health Data Hub
Formerly known as the National Integrated Health Services Information Analysis Asset (NIHSI), NHDH was created to provide better insights into a person’s journey through the health system. It currently includes data on hospital visits, Medicare services, prescription medications, use of aged care services, immunisation history, death information and participation in the National Disability Insurance Scheme.
A key benefit of the NHDH is the ability to look at person-level information – such as how many times a person is admitted to hospital as opposed to just counting the total number of hospitalisations – as well as understanding a person’s pathway through the health system.
Person Level Integrated Data Asset
The ABS’s PLIDA combines information on health, education, government payments, income and taxation, employment, and population demographics (including from the ABS Census of Population and Housing) over time. A key benefit of the PLIDA is the ability to gain insights into the social determinants of health, population demographics and outcomes such as education, employment and income.
National Disability Data Asset
The NDDA – designed to be an enduring national asset – comprises a collection of linked, de-identified data from across multiple national, state and territory government service systems to inform insights on people with disability and their pathways through services. When operational, the NDDA could be used to provide a more complete picture of the programs and services used by people with disability.
Australian National Data Integration Infrastructure
The ANDII is being collaboratively developed by Australian, state and territory governments to deliver shared national infrastructure for data sharing and integration. The ANDII is the underlying infrastructure established to deliver the NDDA. Subject to future agreements and funding, the ANDII could be used to facilitate the creation of other specific data assets on other important policy issues.
Data gaps
The key overarching data gaps are outlined below.
- Genuine and shared decision-making and partnerships (Priority 1): across the health, disability and aged care systems, grassroots-level consultation, leadership in policymaking, nation building, self-determination, community co-design and cross-sector partnerships.
- Social and emotional wellbeing and trauma-aware, healing-informed approaches (Priority 6): the National Strategic Framework for Aboriginal and Torres Strait Islander Peoples’ Mental Health and Social and Emotional Wellbeing 2017–2023 sets out a comprehensive and culturally appropriate stepped care model to guide and support First Nations mental health policy and practice. The AIHW has previously helped develop and test measures of social and emotional wellbeing across the 7 domains. There have also been more recent efforts in developing social and emotional wellbeing nKPI in 2017–18 as part of the Social and Emotional Wellbeing (SEWB) Clinical Working Group (CWG) under the Health Service Data Advisory Group (HSDAG). AIHW has also been working with the Aboriginal and Torres Strait Islander SEWB Measurement Consortium to develop a list of SEWB measures which is forthcoming. However, there is a need for improved data on social and emotional wellbeing among First Nations people. There is also a need for improvements in what tools are used to collect this data. For example, there should be greater use of culturally validated screening and diagnostic tools to measure SEWB – these may be culturally adapted from standard measurement tools, or culturally derived tools designed specifically for First Nations people. Furthermore, there are data gaps related to measurement of intergenerational trauma, and in how First Nations people and communities have been supported and empowered to take control of their healing.
- Healthy environments, sustainability and preparedness (Priority 7): Community driven housing and infrastructure (Objective 7.2), preparedness for natural and other disasters (Objective 7.4), and actions to improve food security (Objective 7.3) are currently major data gaps. The new National Agreement on Closing the Gap includes a commitment to developing a community infrastructure target that will measure progress towards parity in infrastructure, essential service provision, and environmental health and conditions (Target 9B). Currently Target 9B is not able to be reported against as there is no data source currently available which includes all required data elements.
- Identify and eliminate racism (Priority 8) and cultural safety within mainstream health care, as well as across government service delivery sectors more broadly (e.g. education). Examples include the experiences of First Nations people when accessing government services, as well as the practices within health and other services to ensure cultural safety. Data from the Mayi Kuwayu Study may help fill data gaps in relation to cultural safety and racism (Jones et al. 2018; NCEPH RSPH 2020). AIHW also notes Objective 8.4 Enhance data collection to improve measurement of racism and cultural safety across the health system. Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs): data on culturally appropriate PROMs and PREMs are needed but lacking. These measures would provide feedback loops about whether health systems are working in the intended way.
- Access to person-centred and family-centred care (Priority 9): for example, there is a lack of data on
- (Objective 9.1) services across allied health, community health and primary care (including GP data) for First Nations people using mainstream services: while some data are available on the use of First Nations-specific primary health care, the use of mainstream services is a major data gap. The AIHW is committed to a work program that aims to fill this gap by developing processes for the governance, standardisation, collection, analysis and reporting of primary health care data within Australia. This work will ultimately form a National Primary Health Care Data Collection.
- (Objective 9.4) continuity of care and adaption of care to local contexts, and limited ability to disaggregate by disability status, and LGBTQIA+ status (see Table A2 in the Data Tables).
More detailed information about data availability and specific data gaps for each topic is available in Table A3 in the Data Tables.
References
Australian Institute of Health and Welfare (2024) Australia’s health data landscape, AIHW, Australian Government, accessed 19 November 2024.
Jones R, Thurber KA & Chapman J on behalf of the Mayi Kuwayu Study Team 2018. Study protocol: Our Cultures Count, the Mayi Kuwayu Study, a national longitudinal study of Aboriginal and Torres Strait Islander wellbeing. BMJ Open 8.
Jones R, Thurber KA, Chapman J, D’Este C, Dunbar T, Wenitong M et al. 2018. Study protocol: our cultures count, the Mayi Kuwayu study, a national longitudinal study of Aboriginal and Torres Strait islander wellbeing. BMJ open 8.
NCEPH RSPH (National Centre for Epidemiology and Population Health - Research School of Population Health) 2020. Mayi Kuwayu Study Canberra: The Australian National University, accessed 23 October 2024.