The poor health and comparatively low life expectancy of Indigenous Australians are not disputed.1,2 Indigenous children have lower birthweights and higher rates of infection, injury and death than non-Indigenous children.1-3 Mortality rates are also higher than those of Indigenous people in Canada, the United States and New Zealand.1
Forty per cent of Australia’s Indigenous population is aged under 14 years — more than twice the proportion in the total Australian population.4 Targeting child health will likely improve the long-term health of the Indigenous population, because many adult diseases originate in childhood.
Accurate documentation of the current state of Indigenous child health is vital. Continuous data collection allows us to monitor trends in disease and death rates, which inform clinical service needs and service development. These data may also identify the need for public health initiatives and provide a baseline to monitor improvements in health outcomes. Accurate data also help guide development of national health policy and future research, and data dissemination helps raise health professional and community awareness about discrepancies between Indigenous and non-Indigenous health outcomes.
With this in mind, we recently attempted to identify national, or nationally representative, data on Indigenous child health outcomes and to investigate how these data are used.
We searched electronic literature databases and Internet sites. Search strategies and process are available from the authors (Appendix 1; http://www.apsu.org.au/index.cfm?objectid=D7D66872-E4E9-7BAF-6DAD4181360B635E). Our search revealed a paucity of data collections published in or after 2000 with national scope (or state/territory collections from which national estimates may be determined) that report Indigenous status and include information about health outcomes in children aged under 15 years.
We identified 15 national data collections that include Indigenous status, age and health outcomes; six specific to Indigenous health; and 12 specific to child health. We also identified three important state-specific collections of Indigenous child health data. These collections are summarised in Box 1, with details available from the authors (Appendix 2; URL as above).
Although many collections provide useful information, most have significant limitations.
Inaccuracy and inadequacy in reporting of Indigenous status is a limitation of many collections.5-7 Only data from Western Australia, the Northern Territory, South Australia and Queensland were considered of sufficient quality for inclusion in the most recent national analysis of hospital separations for Indigenous people.8 The same problem is reported in birth and death collections,9 emergency department admissions,7 other child health data collections,4 and the national mortality dataset.10 Despite efforts to improve reliability of reporting of Indigenous status, consistent under-reporting is likely,6,11,12 hindering meaningful analysis of Indigenous health outcomes.
Few national data collections are specific to the health of Indigenous children. Most use cross-sectional data from multiple sources to provide a “snapshot” of Indigenous child health at a specified time. There are no ongoing collections to underpin policy development, or to track the effect of interventions or long-term changes in child health.
The Australian Government’s Longitudinal Study of Indigenous Children (LSIC) commenced in April 2008.13 It will follow 2200 young children from 11 sites for at least 4 years. Indigenous people were involved in developing the project, and data are to be collected by Indigenous research officers. Its data will not be nationally representative due to the small sample size, but will inform health providers and policymakers about family, community and other factors influencing health. LSIC will not collect disease-specific clinical information from health services.
A number of national data collections include child health outcomes; however, few provide reliable identifiers for Indigenous children. The Australian Paediatric Surveillance Unit (APSU) facilitates data collection on uncommon childhood conditions,14 but Indigenous children are under-represented in its data, most of which are provided by paediatricians based in urban and regional centres. The APSU is exploring ways to enhance access to data from clinicians working in Aboriginal Community Controlled Health Services (ACCHSs), Aboriginal Medical Services (AMSs), and other rural and remote health services.
Indigenous people often have limited access to mainstream health services and are therefore under-represented in many data collections. Indigenous people are more likely to access ACCHSs, but data collection is a low priority for these often under-resourced services.15 The NT Aboriginal Health Key Performance Indicators (NTAHKPI) project, currently under development, promises excellent coverage for data collection from remote AMSs and ACCHSs.16
Primary care services are crucial, but poorly used, sources of information about Indigenous child health. Annual reports from the Bettering the Evaluation And Care of Health (BEACH) program make no reference to collecting data from ACCHSs.17 The only national data routinely collected from ACCHSs contribute to the annual Service Activity Reporting by the Office of Aboriginal and Torres Strait Islander Health and the National Aboriginal Community Controlled Health Organisation (NACCHO). These Service Activity Reports do not include specific child health outcomes data.18
Most Indigenous child health data (80/136 titles from our PubMed search) come from small, community-based studies in diverse Indigenous communities. Although these data are crucial for understanding health problems and needs in selected communities, they are not necessarily applicable elsewhere and cannot provide the comprehensive, ongoing data needed to support national policy. Conversely, national data are not relevant to all Indigenous communities. Regardless of the data collection, it is crucial that Indigenous communities have a more active role in the collection and management of health data to ensure that information collected is available and useful.19
Indigenous children are under-represented in many national collections, precluding meaningful analysis. The BEACH program report of encounters with Aboriginal people did not include data about Indigenous children.20 The Indigenous sample (about 350 children) in the Longitudinal Study of Australian Children is not representative of the total Indigenous child population.
Even Indigenous-specific surveys have potential for sampling error. The National Aboriginal and Torres Strait Islander Health Survey, 2004–05 (NATSIHS) collected data from a small proportion of Indigenous people, and only those in private residences.1
One-off, targeted surveys (eg, the WA Aboriginal Child Health Survey [WAACHS]) are invaluable for their holistic approach to health and inclusion of data on determinants of health;21 however, they do not allow monitoring of trends. Data analysis in these projects is labour-intensive, often leading to delayed publication of outdated information. Attempts to use key indicator variables to model outcomes for Qld and the NT, to increase the national scope of survey results, have been unsuccessful.22
Indigenous children appear to have higher rates of vaccine-preventable diseases (VPD) and lower immunisation rates than non-Indigenous children.23 However, validity of national data on VPD is limited by inaccurate identification of Indigenous status such that notifications, hospitalisations and mortality data for VPD could not be included for all jurisdictions in the most recent summary report.24 NACCHO claims it is impossible to comment on immunisation rates for Indigenous children “with any accuracy”,15 making it difficult to monitor the effectiveness of vaccination programs.
Although otitis media is a common serious problem among Indigenous children there are no comprehensive national data on rates of ear infection and hearing loss in young children.25 Estimates are made from hospital separation data, exclude children managed as outpatients, and have the problem of inadequate Indigenous identification. NATSIHS (which provides self-reported ear health data), the WAACHS, and small community-based research projects cannot reflect seasonal or temporal variation in disease.
Rheumatic fever occurs predominantly in Indigenous children and can cause rheumatic heart disease.26 Mandatory reporting schemes in the NT and central Australia will enable estimation of the incidence of rheumatic fever among Indigenous children. In collaboration with the APSU and the National Heart Foundation of Australia, the Menzies School of Health Research is conducting surveillance of rheumatic fever to provide national data.
A key contributor to Indigenous health is the concept of social and emotional wellbeing. National child and adolescent mental health data are nearly 10 years old, and the Indigenous sample is too small to be meaningful.27 The WAACHS provides the only data on Indigenous child mental health.21 The approach to addressing mental health must be informed by national data collected using a culturally sensitive approach.
Differences in reporting methods, data sources, clinical details, case definitions and data quality make it difficult to compile a national picture of Indigenous child health to inform strategies to improve outcomes. The Australian Indigenous HealthInfoNet (http://www.healthinfonet.ecu.edu.au) is a useful resource, but it relies on existing data collections and is limited by the quality of the original data (Appendix 2, Table 2).
Accurate, relevant and timely national data on Indigenous child health are essential to inform service provision, resource allocation and policy development; to ensure accountability by governments and health services; and to enable comparisons with non-Indigenous and international outcomes.
An important first step will be to improve the national coverage, quality, availability and usefulness of existing data collections. This has been recognised by the Australian Government Department of Health and Ageing, which, at the recommendation of the Australian Health Ministers Advisory Council (AHMAC), established the National Advisory Group on Aboriginal and Torres Strait Islander Health Information and Data in 2001 (http://www.aihw.gov.au/committees/nagatsihid/). It aims to advise the AMHAC on ways to improve “the quality and availability of data” on Indigenous health, and to coordinate “the range of Indigenous health information management activities”. The Advisory Group developed a strategic plan and a set of national data principles, but has not published any other recommendations.
The Australian Bureau of Statistics and the Australian Institute of Health and Welfare developed a plan to improve identification of Indigenous status and the quality of Indigenous child health data, and to include mental health and primary care data.10,28 Improving Indigenous identification is also a priority of the community services sector,29 while the Menzies School of Health Research is striving to improve translation of health data into policy and practice.30 Work is also underway to improve the coverage of data collections in the NT through the NTAHKPI project.16
It may be more realistic and more meaningful to strive for collection of a standardised minimum set of child health indicators (similar to that proposed for the NTAHKPI project16), facilitated through appropriately resourced, state-based networks of Indigenous medical services and collated to provide a national picture.
More detailed data about specific diseases and health determinants could be collected and analysed by state/territory or region. If the characteristics of communities were collected, there would be potential for data modelling to predict outcomes in similar communities. It is important to acknowledge and address the significant barriers to collecting data in many communities, whether urban or remote. These include inadequate capacity and infrastructure, including technology and appropriately trained personnel, and reluctance to report data that might stigmatise individuals and communities.
Data collection will not in itself eliminate disparities between the health of Indigenous and non-Indigenous children, but is an important component in understanding and addressing the complex causal pathways to poor health.
1 Data collections reviewed for accurate data on Indigenous child health*
National population health data collections that include Indigenous status and age† Aboriginal and Torres Strait Islander Access to Major Health Programs Australia and New Zealand Dialysis and Transplant Registry Australia’s health 2006 (AIHW) Bettering the Evaluation And Care of Health HIV/AIDS surveillance (NCHECR) National Hospital Morbidity Database (AIHW) National Non-admitted Patient Emergency Department Care Database (AIHW) National Cancer Statistics Clearing House (AIHW) National System for Monitoring Diabetes (AIHW) National Injury Surveillance Unit (AIHW) National Mortality Database (AIHW) National Notifiable Diseases Surveillance System National Influenza Surveillance Scheme National data collections and reports specific to Indigenous health‡ Aboriginal and Torres Strait Islander Health Performance Framework 2006 Footprints in Time: Longitudinal Study of Indigenous Children National Aboriginal and Torres Strait Islander Health Survey, 2004–05 Overcoming Indigenous disadvantage: key indicators 2007 Overview of Australian Indigenous health status 2007 (HealthInfoNet) The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples 2005 (AIHW, ABS) |
National data collections and reports specific to children§ A picture of Australia’s children 2005 (AIHW) Australian and New Zealand Neonatal Network Australian and New Zealand Paediatric Intensive Care Registry Australian Childhood Immunisation Register Australian Paediatric Surveillance Unit Longitudinal Study of Australian Children National Congenital Malformations and Birth Defects Data Collection; Australian Birth Anomalies System National Perinatal Data Collection The mental health of young people in Australia The Australian Early Development Index: Building Better Communities for Children Child protection Australia 2003–04 (AIHW) State-specific data collections on Indigenous child health¶ Western Australian Aboriginal Child Health Survey Study of Environment on Aboriginal Resilience and Child Health (New South Wales) Northern Territory Aboriginal Health Key Performance Indicators Information System |
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ABS = Australian Bureau of Statistics. AIHW = Australian Institute of Health and Welfare. NCHECR = National Centre in HIV Epidemiology and Clinical Research. * For full details, see Appendix 2 http://www.apsu.org.au/index.cfm?objectid=D7D66872-E4E9-7BAF-6DAD4181360B635E. † Appendix 2, Table 1. ‡ Appendix 2, Table 2. § Appendix 2, Table 3. ¶ Appendix 2, Table 4. |
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2 Recommendations to improve Indigenous child health data collections
Improve existing data collections
Improve national coverage
Improve accuracy of Indigenous identification data
Ensure collection of standardised minimum datasets of child health indicators
Include details about medical conditions and health outcomes of specific significance to Indigenous children at community, regional and state/territory level
Involve Indigenous communities and health services in the planning, management and use of data collections
Received 20 April 2024, accepted 20 April 2024
- Emily Fremantle1
- Yvonne A Zurynski1,2
- Deepika Mahajan1
- Heather D’Antoine3
- Elizabeth J Elliott4
- 1 Australian Paediatric Surveillance Unit, The Children's Hospital at Westmead, Sydney, NSW.
- 2 Discipline of Paediatrics and Child Health, University of Sydney, Sydney, NSW.
- 3 Telethon Institute for Child Health Research, Perth, WA.
- 4 The Children’s Hospital at Westmead, Sydney, NSW.
The activities of the Australian Paediatric Surveillance Unit are supported by the Australian Government Department of Health and Ageing; NHMRC Enabling Grant No. 402784 and NHMRC Practitioner Fellowship No. 457084 (Elizabeth Elliott); the Discipline of Paediatrics and Child Health, University of Sydney; and the Royal Australasian College of Physicians.
None identified.
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Abstract
Accurate data about Indigenous child health is vital to enable us to understand its current state, to acknowledge achievements, and to determine how to reduce inequalities between Indigenous and non-Indigenous children.
We have identified a paucity of national, or nationally representative, data relating to Indigenous child health outcomes, and significant deficiencies in available data.
A coordinated national approach will help address current data limitations, including lack of identification of Indigenous status, lack of currency, and lack of information about specific health disorders affecting Indigenous children.
To ensure that health data collected are relevant and useful, Indigenous communities must have a role in data collection and management.