Data gaps and development opportunities

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As part of the development of the foundational Ear and hearing health of Aboriginal and Torres Strait Islander people report, a range of data sources were reviewed and assessed for reporting. Data gaps and data development opportunities were also identified (AIHW 2022). The foundational report provided an overview of some key data gaps and development opportunities relating to prevalence, primary health-care data, nationally consistent newborn hearing screening, the ear and hearing health workforce, and outcomes.

Opportunities for data development include:

  • Repeated measurement of ear and hearing health in national health surveys to increase the currently limited prevalence data
  • regular reporting on key primary health-care indicators, including presentations and treatments for ear and hearing health
  • a comprehensive standardised national neonatal hearing screening data collection, including pathways from screening, to diagnosis, to treatment
  • drawing together information from existing school hearing screening programs and pathways from screening, to diagnosis, to treatment and outcomes
  • expanded workforce data sources, with more detailed information on the ear and hearing health workforce, particularly on audiologists
  • greater capacity to link administrative and other data sets to understand pathways and outcomes
  • improved identification of Indigenous status in administrative data sets
  • improved identification of people with ear disease and hearing loss in administrative data sets, particularly:
    • education and health data sets
    • data sets relating to incarcerated populations.

Some of the challenges that need to be overcome for improved data collection include:

  • the fact that services involve many different health-care professionals, service providers and government programs. This creates complexity for:
    • extracting, collating and standardising data because services have differences in governance, funding, regulations, reporting requirements and information systems
    • creating data sharing arrangements, which may include a vast number of entities
  • no consistent national classification system is used to code conditions and services
  • key information, such as diagnosis, may be recorded in free-text fields, which makes data extraction and reporting difficult
  • the lack of culturally appropriate, validated assessment tools to provide information on outcomes for developmental milestones, including language and speech.

This section provides an overview of important updates since the last publication. The data gaps and development opportunities discussed align with issues and priorities raised in:

  • the Roadmap for Hearing Health
  • national inquiries into the hearing health of Australians (House of Representatives Standing Committee on Health Aged Care and Sport 2017 and Senate Community Affairs References Committee 2010).

Prevalence of ear disease and hearing loss

The Australian Bureau of Statistics (ABS) National Aboriginal and Torres Strait Islander Health Survey (NATSIHS) is the main source of data on the prevalence of ear disease and hearing loss among First Nations people. The large NATSIHS sample size, First Nations-specific survey design and repeated measurements over time allow for detailed examination of reported long-term ear and hearing problems. Reported long-term ear or hearing problems were included across the 2001, 2004–05, 2012–13 and 2018–19 surveys, and will be included in the 2022–23 survey. Results of the 2022–23 NATSIHS are due to be released in late November 2024.

The continued inclusion of a hearing test in the NATSIHS and a focus on how to better capture information on children aged under 7 is important for examining changes in hearing loss among First Nations people over time. Capturing this information for young children is critical as the key developmental period for language, vision, hearing and higher cognitive functioning occurs at this age. However, a hearing test was not included in the 2022–23 NATSIHS.

One main data gap relating to prevalence is the need for national information on how many people have ear and hearing conditions, such as otitis media. Research coming out of the Telethon Kids Institute will examine the feasibility and effectiveness of ear health screening from 6 to 8 weeks of age. The project will follow a cohort of over 600 children and provide prevalence estimates for otitis media and hearing loss in First Nations children aged 0 to 5. Collecting information on recent experiences of ear disease and hearing loss, particularly for young children, would greatly improve data on prevalence.

As well as NATSIHS, including ear and hearing health related questions in other national surveys would increase available information on the prevalence of ear and hearing problems. One example is the expansion of the second national eye health survey to become the Australian Eye and Ear Health Survey, currently under collection. The expanded survey will collect data to establish prevalence, risk factors and impacts of hearing loss across Australia, and is expected to run over the next 2 years. For information on this survey, see the study protocol (Kha et al. 2023).

Primary care

High quality information on primary health care is essential for understanding the role and use of primary care in the diagnosis, treatment and management of ear disease and hearing loss among First Nations people.

Information about how people use primary health care is limited. The Australian Institute of Health and Welfare (AIHW) is involved in the following activities to improve the quality of information on primary health care.

The AIHW is leading work to develop nationally consistent primary health care data.

The AIHW is working in partnership with the Department of Health and Aged Care, and the Australian Digital Health Agency to develop and implement a framework to guide the use of My Health Record system data for research and public health purposes.

The AIHW is developing a new indicator on annual ear health checks in primary care settings:

Proportion of First Nations regular clients aged 0–14 who received an ear health check in the previous 12 months, including whether a visual check, tympanic movement check, or both, were performed.

This indicator is important because frequent assessment of ear and hearing health ensures early identification, management and treatment of ear disease and hearing loss. Reporting this information will improve understanding of service coverage and service access, and will inform decisions about providing services to areas most in need.

The new indicator would be collected as part of the national Key Performance Indicators (nKPI) collection, which is a set of primary health care indicators for First Nations people focusing on maternal and child health, preventative health, and chronic disease management. The collection contains data on First Nations regular clients of organisations receiving funding under the Indigenous Australians’ Health Programme.

The indicator is being pilot-tested for a few collection periods starting from June 2024 to assess data quality. The indicator will be considered for inclusion in the data collection depending on the results of the pilot testing.

Newborn hearing screening

States and territories collect data on their respective newborn hearing screening programs. However, the content and scope of data collected varies. Substantial efforts have been made to adopt more consistent and comparable indicators across neonatal hearing screening programs nationally.

Developing a national register for neonatal hearing screening, including information on screening, diagnosis, and treatment, has been recommended in multiple parliamentary inquiries into hearing health (House of Representatives Standing Committee on Health Aged Care and Sport 2017; Senate Community Affairs References Committee 2010). This is a priority area within the Roadmap for Hearing Health (COAG Health Council 2019). To support this development, the National Framework for Neonatal Hearing Screening was reviewed in 2020.

The AIHW conducted a feasibility study in 2022 which recommended establishing a National Neonatal Hearing Screening Data Collection (NNHSDC). The development of the NNHSDC is being led by the AIHW and involves:

  • establishing an advisory committee
  • working with all states and territories towards consistent data standards
  • developing a National Best Endeavours Data Set
  • reviewing and aligning to the National Framework for Neonatal Hearing Screening and national performance indicators.

The collection will initially include demographic and hearing screening data but can be expanded in future to include audiological assessment, risk factors and early intervention data. The national NNHSDC will:

  • enable consistent monitoring and evaluation of programs
  • enable monitoring of program coverage for First Nations people
  • enable monitoring of engagement with early intervention services
  • underpin the development of a nationally consistent quality and standards framework
  • permit national and international benchmarking and collaboration
  • enable research into risk factors and health conditions associated with permanent congenital hearing impairment
  • enable research and reporting on patient pathways through screening, diagnosis and intervention, potentially linking with other data sources to understand outcomes of children with hearing loss.

Ear and hearing health workforce

The workforce delivering ear and hearing health services is dynamic (high turnover) and diverse. It includes both specialists and generalists with ear and hearing health capability, and models of care can vary between services and regions. Available ear and hearing health workforce data give a broad indication of access to specialists and ear and hearing health services. However, current data provide an incomplete picture. The extent to which First Nations patients are serviced by ear and hearing health professionals is not clear from audiology, ENT or allied health personnel data.

Possible data developments that would increase understanding of the ear and hearing health workforce include:

Outcome measures

No national data sources provide insights into health or social outcomes among First Nations people with ear disease and hearing loss. Two main approaches could be used to examine outcomes of First Nations people who have experienced ear or hearing problems:

  • targeted longitudinal studies
  • data linkage of health and outcome-related data sets.

Targeted longitudinal studies

National Acoustics Laboratories is developing a longitudinal study called HearOut, focusing on hearing health outcomes for First Nations children. A First Nations leadership group has been established to provide cultural guidance and advice around culturally safe research practices. The project seeks to define and understand relevant developmental and wellbeing outcomes, and what tools/ resources are available to inform a longitudinal study design.

The project conducted a literature review which revealed a substantial knowledge gap on the negative impacts of persistent otitis media in early childhood on speech and language for First Nations children. The National Acoustics Laboratories report that many of the studies reviewed assume that developmental milestones for First Nations children are the same as they are for non‑Indigenous children, and use standardised assessments with little to no adaptation. In the published literature, only 4 development-related checklists were found that have been adapted specifically for First Nations children. As well, very few Health-Related Quality of Life tools have been developed or adapted for First Nations populations. Ethics applications are underway, and they are in the early stage of establishing research agreements with participating communities.

The Study of Environment on Aboriginal Resilience and Child Health (SEARCH) has followed over 1,600 First Nations children in urban and regional New South Wales since 2008 to provide longitudinal information about their health, including hearing and speech development. The SEARCH is owned and led by First Nations people. It functions as a long‑term partnership between the Aboriginal Health & Medical Research Council, Aboriginal Community Controlled Health Services in New South Wales, the Sax Institute, and researchers from across Australia (Sax Institute 2023). Longitudinal analysis of this data source has the potential to provide new insights in antecedents of ear and hearing related outcomes.

Data linkage of health and outcome-related data sets

Data linkage (also called data matching, data integration or record matching) combines information from multiple data sources while preserving privacy. This tells a much more powerful story than is possible from individual data sources in isolation. It can also improve understanding of a range of issues. However, capacity to examine outcomes using data linkage is limited by data gaps in information on First Nations people with ear disease or hearing loss in administrative data sets.

The Murdoch Children’s Research Institute has been funded to develop the Australian National Child Hearing Health Outcomes Registry (ANCHOR), which seeks to compile a national research database to collate and track ear and hearing outcome measures. The program will pilot hearing-specific service data collections from Victoria and Queensland with an access and equity lens ‘to ensure no deaf or hard of hearing (DHH) child “slips through the cracks’” (MCRI 2023).

ANCHOR also aims to develop a national Core Outcome Set to enable services and researchers to measure outcomes that are important to deaf and hard of hearing children, families, and services. The National Acoustic Laboratories HearOut study has been exploring what outcomes matter to Aboriginal and/or Torres Strait Islander communities who experience recurrent and persistent otitis media. ANCHOR is exploring what outcomes matter to Aboriginal and/or Torres Strait Islander children who are born with permanent sensorineural hearing loss. Together, this information will facilitate streamlined data collection that can be used to identify service gaps and areas of need.

Data linkage would allow research on the relationship between ear and hearing health problems in childhood and outcomes such as contact with the criminal justice system

The patient journey

The ear and hearing health service system is complex, and navigating it is challenging for patients and their families (the patient journey). There are critical points in this patient journey where delays to receiving care, and burden in accessing care, may result in patients ‘falling out’ along the care pathway.

There are no national sources of data on how many patients are lost along this patient journey, at what stages, or for what reasons.

Access and experience

Researchers from Flinders University are undertaking the Pathways For Aboriginal and Torres Strait Islander Hearing Health: The PATHWAY Project (Flinders University 2022). The aim of this project is to identify the current hearing health-care pathway patterns for First Nations children, from surveillance, through management and follow-up. Located in South Australia, the project is co-designed in partnership with Aboriginal communities, to help overcome difficulties experienced by First Nations children in accessing hearing health care.

Early consultation shows that there are a number of points along the pathway where children are ‘falling out’ of the system and not getting the help they need. The study will take place over 18 months and will be conducted through a yarning based intervention to further understand lived experience. The project will focus on building local capacity, to train Aboriginal health workers and support them to continue ear health work in between fly-in-fly-out visits from other professionals.

The PATHWAY Project also involves a local ‘Patient Navigator’ role to help families identify and access the relevant support services for their child’s ear health.

The hidden wait list

The waiting time for elective surgery is an indication of how easy the service is to access.  Information about waiting times for elective surgery presented in this report refers to the time a patient waits for elective surgery, calculated from the date a patient is placed on the hospital’s waiting list to the date of admission for the surgery. However, this does not include the time taken at other steps in the clinical pathway. These steps include accessing primary health care, the process of health professionals diagnosing the underlying condition and referring the patient to an ENT specialist, obtaining appointments with an ENT, and being placed on the surgical waiting list.

The additional time between referral from primary health care to initial consultation with a medical specialist such as an ENT, sometimes referred to as the hidden wait list, is an important step in the patient journey but is not well understood at the national level. National data are available in the National Non Admitted Patient Data Collection. However, further investigation is required in collaboration with states and territories to determine whether data quality and reliability are suitable to meaningfully report on outpatient waiting times.

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