Key data gaps

This report applied a person-centred model to facilitate consistent, comprehensive and structured reporting on the health and wellbeing of older Australians (Figure 11.1). This model is based on social–ecological frameworks of the determinants of health and wellbeing and was developed by the Australian Institute of Health and Welfare (AIHW) to measure and report on health and welfare of the general population. The approach identifies 7 information domains needed to understand the experiences of the population and its various cohorts. It reflects that a person’s health and welfare result from a complex interplay between biological, lifestyle, socioeconomic, societal and environmental factors, many of which can be modified to some extent by health care, financial support and other interventions. The person-centred model provides a way to understand these factors and their interactions.

While much is known about the health and wellbeing issues that affect older Australians, there are still notable gaps. This section explores some of the main data gaps, highlighting those where timely and valuable improvements and developments could be made.

Figure 11.1: Person-centred model

The diagram shows the seven domains that each contribute to the person-centred model for understanding and reporting on the health and well being of older Australians: health; housing; social support; education and skills; employment; income and finance; and justice and safety.

Existing data sources for reporting on older people

Using the 7 domains as a framework, there is a range of elements that can be explored to build an understanding of each domain. These elements can be categorised as:

  • Current status: How are older people currently faring relative to this domain? How can their experience or situation be described?
  • Determinants: What factors related to this domain may positively or negatively affect older people’s health and welfare? How many older people are exposed to such factors, and how can they be described?
  • Services: What services related to this domain are available to older people and how are they being used? What are the outcomes of these services and what additional services are needed?

Table 11.1 outlines the elements within each category and for each domain that have been used in this report on the health and wellbeing of older Australians. The elements largely reflect the information currently available; that is, what is known about the current status, determinants and relevant services. The domains of the model provide a structure for organising the elements to enable systematic analysis, as well as identify areas where information on older people is sparse and could be filled to provide a more comprehensive picture. These elements can change over time, as analysis progresses and the evidence base grows.

Table 11.1: Person-centred model of health and welfare: domains and elements currently reported

Domain

Status

Determinants

Services (use, need, outcomes)

Health

Self-assessed health

Disability

Mortality

Causes of death

Burden of disease

Injuries

Selected health conditions

Multimorbidity

Behavioural

Biomedical

Primary care

Allied health care

Mental health services

Dental services

Hospitals

Pharmaceutical use

Aged care

Integration of health and aged care

Housing

Housing (tenure, dwelling type, suitability)

Living arrangements

Homelessness and insecure housing

Housing (tenure, dwelling type, suitability)

Homelessness and insecure housing

Homelessness and insecure housing

Social support

 

Social participation

Social engagement and isolation

 

Education and skills

Highest level of educational attainment

Highest level of educational attainment

Participation in education and training

 

Employment

Participating in the workforce

Working arrangements

Retirement

Underemployment and unemployment

Retirement

 

Income and finance

Sources of income

Level of income

Income during retirement

Superannuation and other assets

Income during retirement

Superannuation and other assets

Income support payments

Justice and safety

 

Discrimination

Abuse

Older prisoners

 

Note: Where a cell is empty, this indicates that information about the relevant domain's current status, determinants or services is not yet available. 

What are the main challenges with the existing data?

Building a comprehensive picture of the health and wellbeing of older Australians requires information to be drawn from many different data sources, including administrative and survey data. The overarching challenge with much of the data used in this publication, and data available on older Australians in general, is that the data sources have been designed for other and/or wider purposes than exploring the health and wellbeing experiences of older Australians. It is not an issue of the underlying data quality of these data sources. As such, there are many improvement and development opportunities that can be easily implemented to achieve quick gains in building a comprehensive picture of older Australians.

It should also be noted that some of the challenges with existing data sources are not specific to data on older Australians and can occur when focusing on any specific population group (for example, limited disaggregation due to small cell sizes or high standard errors in survey data).

The main limitations identified with existing data include:

  • domain coverage – incomplete coverage of health and wellbeing issues affecting older people
  • population groups – fragmented and incomplete coverage of issues affecting population groups of interest
  • data presentation – need for more disaggregation for older age groups, particularly at local geographical levels.

Domain coverage

While much is known about older Australians across the 7 domains of the person-centred model discussed above, there continue to be notable data gaps and opportunities. While not exhaustive, key gaps exist in the domains of ‘Income and finance’ and ‘Justice and safety’. Data on the prevalence of financial stress experienced by older Australians, as well as the reasons for financial stress, are not readily available. A critical data gap exists around abuse experienced by older Australians, although a prevalence study by researchers at the Australian Institute of Family Studies (AIFS) is currently underway. For more information, see AIFS Elder Abuse Prevalence Study.

Much of the data available is also not person-centred – that is, showing the combination and clustering of factors within an individual – but rather population-wide, showing the prevalence of different variables. This results in an incomplete picture of the range of factors affecting people’s health and wellbeing, and the concentration of many factors within the same individual. Even considering health alone, data on the prevalence of different diseases are often presented without considering the common coexistence of multiple conditions within the same individual. In turn, health care for this person can be fragmented and unmanageable, with management approaches for different conditions competing for the person’s time, Medicare-funded services and other resources.

Population groups

This report has illustrated that older Australians are not a homogenous group. There is great diversity within the older population, and data are needed to inform what we know about their health and wellbeing. For example, information is needed to identify what are the health-care needs of particular population groups, what are the barriers for accessing care and services, what interactions take place between the domains and how these affect pathways and outcomes.

Data from national surveys play an important role in providing information on the health and wellbeing of older Australians. Challenges exist in collecting data on population subgroups, including data quality and coverage. It can be difficult, for example, to obtain a large representative sample of some populations in national surveys – for example, culturally and linguistically diverse (CALD) or lesbian, gay, bisexual, transgender and intersex (LGBTI) communities – and data become less reliable and robust as sample size decreases.

Further, some surveys exclude certain geographical regions and, in doing so, decrease visibility of these population groups. For example, some surveys do not include populations living in very remote locations; this impacts the ability to comprehensively report on both population groups of older Indigenous Australians and older Australians living in rural and remote communities. Another example is that people living in residential aged care facilities may not be in scope for, or identified, in data collections such as surveys. People in such care settings can have very different needs compared with those living in private homes in the community. Similarly, people living with cognitive decline or dementia may face barriers to participating in data collections, and may have specific needs distinct from older people without these conditions.

While not specific to data related to older Australians, identification of specific older population groups of interest also needs improvement. As described in Older people from CALD backgrounds, there are various ways to describe cultural and linguistic diversity but available data sources only capture some of these concepts. For other population groups, such as older people who identify as LGBTI or otherwise diverse in gender, sex or sexuality, several data sources lack the option for older people to identify as such. Identification of sex and gender-diverse populations are particularly limited. Without standard ways of identifying people, there can be a lack of data quality and limited comparability across collections.

Many of the older populations of interest are designated as people with special needs in the Aged Care Act 1997. This designation adds further importance to improving both identification and coverage of these population groups across various data sources.

Data presentation

Often publicly available data on older Australians are presented with limited age disaggregation, sometimes as a single 65 and over age group. This is sometimes a result of the data that are collected. In other cases, the data exist, but are not published or available. Additional disaggregation of these age groups is important in understanding how the health and wellbeing of older people can differ at different ages. For example, the health and wellbeing of people aged 90 and over may be substantially different from people aged 65.

Further disaggregation by geographical areas is an additional area for improvement. Additional disaggregation by local areas would be particularly valuable. However, further disaggregation may raise concerns (as mentioned above) in relation to population groups, as well as concerns of confidentiality and statistical validity due to small population groups. The quality and consistency of geographical units also varies between data sources.

What are the impacts of these issues?

As well as summarising currently reported information, Table 11.1 illustrates gaps in the information available across the 7 health and wellbeing domains; in particular, in the social support, education and skills, employment, and justice and safety domains. There are also substantial gaps in information on service use, needs and outcomes across the majority of domains, including a lack of information on how multiple service sectors (for example, health and aged care) work together. Within individual domains there are also gaps relating to, for example, selected health conditions (such as dementia, mental health), use of health services (such as private dental practices/providers, palliative care), the cultural appropriateness or safety of aged care services and elder abuse. These data gaps limit the ability to fully understand the factors (and their interactions) that influence the health and wellbeing of older Australians.

There is great diversity within the older population and being able to report on ageing-related issues for population groups is important for building an understanding of their needs and how their life experiences differ. This analysis relies on the variables collected in the underlying data and, in many instances, this is missing, not comprehensive or inconsistent across the data sets. This is particularly the case in relation to data on Australians who identify as LGBTI or otherwise diverse in gender, sex or sexuality, and CALD populations. Similar data quality issues have also been reported in relation to older Aboriginal and Torres Strait Islander people.

What can be done?

Work can be done to not only improve what data are collected about older people, but what is reported. The existing data can also be harnessed in different ways to provide insights into pathways and outcomes.

Maximise existing sources

For existing data sources, where the available data are reliable and robust, thought needs to be given to presenting as much detail as possible to describe the diversity within the older population, for example:

  • by 5- or 10-year age groups for ages 65 and over
  • including specific characteristics, such as socioeconomic status and remoteness.

Add to existing data sources to deal with priority gap areas

In the longer term, consideration of data improvements could include:

  • enhancing existing data sets where information about older people is not collected comprehensively. For example, many population surveys are limited to people living in private dwellings. They thus fail to account for the 1 in 20 (4.5%) people aged 65 and over, or 185,000 people, who live in residential aged care (AIHW 2020). The health and wellbeing of this population group differ considerably to that of the population of older Australians living in private dwellings
  • improving data capture to support analysis of population groups that may experience ageing differently – for example, incorporating the Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables, released by the Australian Bureau of Statistics in 2021 (ABS 2021), into data collections
  • integrating data to better understand pathways and outcomes across domains and elements – for example, accessibility and availability of health services (particularly primary health care) data for older Australians in regional and remote areas. This could also include integration with non-government data sources, such as data collected by advocacy services
  • filling gaps where there are limited or no data, which could include developing targeted surveys or modules to explore the health and wellbeing of older Australians, specific components and lifecourse impacts. The development of an older person survey module could build on a number of excellent national survey data sources that already exist. Such a module could be specifically designed to capture several gaps; for example, data about dental services and mental health, and conditions particularly pertinent to older Australians, such as dementia
  • improving the timeliness of data collection and reporting, so that data can provide rapid indications of any emerging issues, and reflect the impacts of any changes to aged care policy and service delivery.

New developments and data improvement activities

  • The AIHW is currently working with governments to develop a number of Multi-source Enduring Linked Data Assets (MELDAs) to meet an increasing demand for access to linked data, including the National Primary Health Care Data Asset, National Disability Data Asset and the National Aged Care Data Asset. These MELDAs will facilitate use of person-centred data to construct a more detailed picture of the population of interest, and to explore relationships between multiple elements of health and welfare.
  • In response to the Royal Commission into Aged Care Quality and Safety, data improvement activities are taking place within the aged care data system. The AIHW is leading the development of a National Aged Care Data Strategy. This includes undertaking a comprehensive review of the available data and identifying information gaps, limitations and opportunities. In addition to establishing the linked data asset noted above, a national minimum data set is being developed to standardise the collection and reporting of a core set of aged care data. New data governance and stakeholder engagement arrangements will inform these developments. These activities will provide a path forward for understanding in more detail this aspect of some older people’s lives.
  • The AIHW is undertaking a program of work for the Department of Health focused on monitoring dementia in Australia. The work includes providing advice on how to direct efforts to build sustainable data collections and monitoring programs for dementia in Australia.
  • The AIHW and the Department of Veterans’ Affairs (DVA) continue to increase the range of data available about serving and ex-serving Australian Defence Force (ADF) members, and collaborate on how best to describe the information. Work is also underway to build a more comprehensive profile of the welfare of Australia’s serving and ex-serving ADF members, as well as their families. With the AIHW and DVA collaboration broadening its scope on wellbeing, research will also look to address key information gaps in the areas of education, employment, justice, housing, safety, finance and social support.
  • More broadly, new questions included in the 2021 Census on long-term health conditions and Australian ADF service will enable the collection of data on health conditions, such as arthritis and diabetes, and provide a better understanding of the circumstances of Australia’s veteran community, including older veterans.

References

ABS (Australian Bureau of Statistics) 2021. Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables. ABS cat. no. 1200.0.55.012. Canberra: ABS. Viewed 19 August 2021.

AIHW (Australian Institute of Health and Welfare) 2020. GEN Aged care data snapshot 2020 – third release. Canberra: GEN. Viewed 20 March 2021.