Appendix: Current and emerging data sources
Dementia Support Australia: referral data for the NBA and data on cases supported by the DBMAS and SBRT.
|Source||Data source||Description||What it provides||Limitations/other notes|
|AIHW||Australian Burden of Disease Study (ABDS)|
Ad hoc updates
|The ABDS provides estimates on the fatal, non-fatal and total burden of over 200 diseases and injuries in Australia, as well as estimates of the disease burden attributable to specific risk factors.||The non-fatal, fatal, and total burden of disease attributable to dementia, and the proportion of dementia burden that is due to specific risk factors that have a causal association with dementia.||Data are not directly linked to dementia diagnosis but are based on study-derived rates rather than actual diagnosis information.|
The quality of the non-fatal burden estimates could be improved if more recent and more generalisable data on dementia prevalence and severity in Australia become available.
|AIHW||Disease Expenditure Database|
Ad hoc updates
|The Disease Expenditure Database provides data on government, patient and insurance expenditure on disease, estimated using multiple data sources.||Health system expenditure attributable to dementia||Data are not directly linked to dementia diagnosis for primary care data but are based on study-derived rates rather than actual diagnosis information.|
The quality of disease expenditure estimates could be improved if more generalisable data on dementia prevalence and severity in Australia become available.
There is partial funding for the Disease Expenditure Database.
|AIHW||National Aged Care Data Clearinghouse (NACDC)|
|The NACDC is a central repository of national aged care data from various sources, mostly related to government-subsidised aged care programs operating under the Aged Care Act 1997. It includes data relevant to dementia status identification collected from:||The NSAF identifies people with dementia living in the community and their assessed care needs.|
The ACFI captures up to 3 behavioural or mental conditions, and up to 3 medical conditions impacting care of people in aged-care facilities.
|While work is needed to develop the NSAF into a comprehensive resource for statistical reporting, it is expected to be replaced with the Integrated Assessment Tool within the next 12 months. It is unknown what data will be made available for future analysis, or when it will be made available.|
The ACFI may not capture information on dementia if, at the time of an ACFI assessment, other mental/behavioural conditions had a bigger impact on a person’s care needs. It was replaced on 1 October 2022 by the Australian National Aged Care Classification (AN-ACC) and will no longer collect information on health conditions. While the AN-ACC assessment will assess a person’s level of cognitive impairment, the absence of specific clinical diagnosis information will be a major barrier for ongoing dementia monitoring.
The combination of these upcoming changes creates uncertainty about the utility of these data for routine dementia monitoring.
|AIHW||National Hospital Morbidity Database (NHMD)|
|The NHMD is a compilation of episode-level records from admitted patient morbidity data collection systems in Australian hospitals. The data supplied are based on the national minimum data set (NMDS) for admitted patient care and include demographic, administrative and length of stay data, as well as data on the diagnoses of the patients, the procedures they underwent in hospital and external causes of injury and poisoning.||Provides information on dementia-related hospitalisations where dementia was recorded as a principal and/or additional diagnosis.||The hospital separations data do not include episodes of non-admitted patient care provided in outpatient clinics or emergency departments.|
In 2015 supplementary codes for chronic conditions were introduced to better capture health conditions that impact care but may not be the diagnoses associated with the hospital stay. The introduction of these codes is expected to have had an impact on the use of additional diagnosis codes and may have reduced the capture of dementia diagnosis information. Supplementary code data are not available for monitoring and reporting to date.
As noted in Dementia data gaps and opportunities (AIHW 2020), the admitted patient data are known to under-report dementia among admitted patients, based on principal and additional diagnosis codes.
|AIHW||National Integrated Health Services Information Analysis Asset (NIHSI-AA)|
|The NIHSI-AA contains de-identified data from 2010–11 to 2020–21 (v2.0) on admitted patient care services (in all public and, where available, private hospitals), emergency department services and outpatient services in public hospitals, and where available private hospitals, for all participating states and territories (New South Wales, Queensland, Victoria, South Australia, the Australian Capital Territory and Tasmania). It also includes national data for the same period from the Medicare Benefits Schedule, Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme as well as Residential Aged Care data, and National Deaths.||Identifies patients with dementia, where:||As noted in Dementia data gaps and opportunities (AIHW 2020), the admitted patient data are known to under-report dementia among admitted patients, based on principal and additional diagnosis codes.|
The Northern Territory and Western Australia do not have hospitals data included. The coverage of private hospitals data is incomplete.
|AIHW||National Mortality Database (NMD)|
|The NMD holds records for deaths in Australia from 1964 and comprises information about causes of death (compiled by the ABS) and other characteristics of the person, such as sex, age at death, area of usual residence and Indigenous status.||Provides information on people who died with dementia, where dementia was recorded as:||The number of people with dementia recorded on their death certificate is unlikely to include every person with dementia, even when dementia contributed to their death.|
|AIHW||Pharmaceutical Benefits Scheme (PBS)|
Repatriation Pharmaceutical Benefits Scheme (RPBS)
|The PBS database provides data on medications prescribed and prescriptions dispensed under the PBS and RPBS.||Provides information about claims for Alzheimer’s-specific PBS listed medications, including:||The PBS provides only partial coverage of the population with dementia as only people who are eligible to access medications for Alzheimer's disease through the PBS are included.|
|ABS||Multi-Agency Data Integration Partnership data asset (MADIP)|
Ad hoc updates
|The MADIP data asset contains linked national survey and administrative data from a range of Commonwealth agencies, including healthcare, Census, social security payments, personal income tax, and mortality to create a comprehensive picture of Australia over time.||Identifies people with a dementia diagnosis recorded on their record in the National Death Index. PBS information can also be used to identify people who were dispensed Alzheimer’s-specific PBS-listed medications.||The MADIP does not contain hospital or key aged care data, which limits utility for dementia projects.|
New 2021 Census data on long-term health conditions (including dementia) may help identify people diagnosed with dementia (subject to further exploration and comparison with other sources).
|ABS||Survey of Disability, Ageing and Carers (SDAC)|
Updates every 3–4 years
|The SDAC is a national survey that collects detailed information on a sample of people who:||Provides sociodemographic details, level of disability, need/ source of assistance, co-existing conditions, carers of people with dementia||The information on dementia collected by the SDAC requires people to be formally diagnosed, and this diagnosis being reported by the respondent.|
The information collected on carers is restricted to co-resident carers (primary and otherwise) only for people with dementia.
|Dementia Australia||The National Dementia Helpline administrative data|
Ad hoc updates
|Dementia Australia is an organisation that delivers services and supports across Australia through the National Dementia Support Program (NDSP). Data on incoming calls to the National Dementia Helpline, as well as from people who use their services, are collected.||Provides high level information on contacts to the National Dementia Helpline and outcomes of the National Dementia Support Program.||These data relate specifically to Dementia Australia clients and are only available by request through Dementia Australia. Unit record data are not currently available for external analysis or linkage.|
|Dementia Support Australia||Dementia Behaviour Management Advisory Service (DBMAS); Severe Behaviour Response Teams (SBRTs); Needs Based Assessment (NBA) administrative data|
Ad hoc updates
|Identifies people receiving specialist dementia care in residential aged care or at home and the services they received. Services are provided in hospitals where appropriate. Data cover a range of cohort trends, demographics, comorbidities, gender, clinical and psychosocial factors.||These data relate specifically to Dementia Support Australia clients and are only available by request. Unit record data are not currently available for external analysis or linkage.|
|Data source||Description||Expected timeframe for data availability1||Geographic coverage|
Australia Dementia Network (AD-Net) Clinical Quality Registry
A registry of people newly diagnosed with dementia or mild cognitive impairment (MCI) in selected memory clinics and dementia diagnostic services across Australia. Currently being piloted in selected clinics to track, benchmark and report on the clinical care of people with dementia or MCI. The goal is to register the entire population of persons newly diagnosed with dementia or MCI, including in specialist and primary care.
State/territory during pilot, with aim to roll out nationally
A self-report data collection undertaken by the Australian Bureau of Statistics (ABS) every 5 years to collect comprehensive information on the personal and household circumstances of the Australian population. For the first time, the 2021 Census asked questions about people’s long-term health conditions, including dementia.
AIHW is likely to gain access to 2021 Census microdata on long-term health conditions to validate the data against other sources to determine how representative it is of people living with dementia. This is an essential step before Census data can be incorporated into national prevalence estimate models in an informed way.
My Health Record stores patient summaries and clinical information uploaded from information systems of participating health service providers across Australia, providing both clinician and patient-centric views of a person’s longitudinal health data.
As at May 2022, there were more than 23.3 million My Health Care records, with 96% of these (over 22 million records) containing data. 99% of GPs are registered to use My Health Record, but only 23% of medical specialists have registered (ADHD 2022).
Data assessment activities are underway to understand how representative the My Health Record population is, and which population subgroups are represented. This will provide information on whether patients with dementia are well represented in this population and whether the data could help improve dementia prevalence estimation in the future (subject to the establishment of the arrangements to govern the use of de-identified My Health Record data for research and public health purposes).
The AIHW and the Department of Health and Aged Care are partnering to develop a National Aged Care Data Strategy. Two key activities under the data strategy include the development of an Aged Care National Minimum Data Set (NMDS) and a Data Asset. Once implemented, the NMDS and Data Asset have the potential over the medium term to improve data on people with dementia who interact with the aged care system. This includes improving data on the reporting of dementia and other health conditions during a person’s time using aged care services.
The AIHW is working with partners to develop the National Disability Data Asset (NDDA), which will link data relating to people with disability from governments and agencies across Australia, to provide a richer picture of the life experiences of people with disability. The NDDA has been piloted and in the long term the NDDA may provide valuable data on experiences and outcomes for people with disability who are impacted by dementia.
The AIHW is leading the development of a Primary Health Care Information System. A key component of the system will be the Data Collection, envisaged to contain reliable, detailed, high-quality data about primary health care (focusing on general practitioner (GP) activity data initially but expanding into broader primary care data such as nursing and allied health). It aims to fill existing primary care data and information gaps and could help improve reporting on dementia diagnosis and management in primary care within the next decade.
NPS MedicineInsight is a quality improvement program developed and managed by NPS MedicineWise to support quality improvement in Australian primary care and the post-market surveillance of medicines. It is a large general practice data set established in 2011 with core funding from the Department of Health until June 2022.
The data consist of de-identified whole-of-practice data extracted from the clinical information systems of participating general practice sites. From July 2019 to June 2020, participation numbered 458 general practices, 5.6% of general practices nationally, ranging from 2.0% in South Australia to 19% in Tasmania (NPS MedicineWise 2021).
Pathology laboratory data on genetic testing
Subject to adhering to relevant privacy provisions, de-identified data from pathology clinics offering genetic testing to assess a person’s risk of developing certain types of dementia could be a potential future data source contributing to understanding patterns and variations in dementia diagnosis, clinical pathways and outcomes. However, as genetic testing is currently not a routine part of dementia diagnosis, its usefulness as a data source for national monitoring is limited unless it becomes more routinely used in the future.
Operated by the WA Primary Health Alliance, Primary Health Insights is a storage and analytics platform that hosts the de-identified primary health data of 27 of the 31 Primary Health Networks (PHNs) across Australia. It aims to use reporting and analytics of de-identified primary care data to enable general practice, commissioned healthcare service providers and PHNs to make informed decisions about primary health care delivery. Provision of data to other organisations or individuals for research or planning purposes will be strictly controlled by the Primary Health Insights Governance Framework.
Based at the South Australian Health and Medical Research Institute, the Registry of Senior Australians (ROSA) monitors the health, service utilisation, medication use, mortality, and other important outcomes of people receiving aged care services in Australia. ROSA currently has 2 components:
National (‘Historical ROSA’) and State (South Australia) (‘Prospective ROSA’)
A longitudinal study of over 250,000 people aged 45 and over living in New South Wales. Managed by the Sax Institute, the study follows the health of participants to examine which factors are associated with good or poor health as people age. Survey responses are linked to other health data, allowing a broad view of health service use and outcomes.
(Note that the Addressing Dementia through Analysis of Population Traits and Risk Factors (ADAPTOR) project will use 45 and Up data to investigate the incidence of dementia in Australia and the proportion of dementia that is preventable through modifying risk factors.)
State (New South Wales)
The Australian Longitudinal Study on Women’s Health has been funded continuously since 1995 by the Department of Health and Aged Care. It has national coverage and has more than 50,000 participants across 4 age cohorts. It has linked data across all jurisdictions and multiple data sources. It includes data on more than 4,000 women with records of dementia, and women who are carers of people with dementia.
ADHD (Australian Digital Health Agency) (2022) My health record – the big picture, May 2022, accessed 11 July 2022.
NPS MedicineWise (2021) General Practice Insights Report July 2019–June 2020 including analyses related to the impact of COVID-19. Sydney: NPS MedicineWise, accessed 11 July 2022.