National Dementia Data Improvement Plan 2023–2034

Dementia research and registries

The National Health and Medical Research Council (NHMRC) National Institute for Dementia Research (NNIDR) was established in 2015. The NNIDR led a Boosting Dementia Research Initiative to improve dementia data and methods over 2019–2021, and developed an Aboriginal and Torres Strait Islander Dementia Research Roadmap and a Culturally and Linguistically Diverse Dementia Research Action Plan. While the NNIDR closed on 30 June 2020, dementia remains a research priority for the NHMRC and it funds dementia research on prevention, early diagnosis, quality care and treatments (NHMRC 2023).

In 2015 the Australian Government set up the Medical Research Future Fund (MRFF) to fund important health and medical research projects. Part of this funding will be used for the Research Data Infrastructure initiative to provide $100 million over 10 years between 2024–25 and 2033–34 to invest in national research data infrastructure (such as data registries, biobanks and data linkage platforms). The initiative will support Australian health and medical research by helping researchers to collect, share and analyse data more widely (Department of Health, Disability and Ageing 2024), which may lead to improvements in dementia data. 

The Australian Dementia Network’s (ADNeT) Registry was established through the NNIDR Boosting Dementia Research Initiative. The registry aims to track, benchmark and report on the clinical care of people with dementia or mild cognitive impairment including significant memory loss without the loss of other cognitive functions such as reasoning and judgement (Dementia Australia 2022). The goal is to register all Australians newly diagnosed with either dementia or mild cognitive impairment, to drive improvements in quality of care and patient outcomes. The registry is being piloted in memory clinics and dementia diagnostic services across Australia but does not include all diagnosing clinicians (ADNeT 2023). Further funding for the ADNeT Registry was announced in the 2023–24 budget (Department of Health, Disability and Ageing 2023), which may increase the registry’s coverage and ability to consistently collect data on newly diagnosed dementia in Australia in the future.

International reporting requirements

The World Health Organization’s Global Dementia Observatory (WHO 2023) is the monitoring and accountability mechanism for the Global action plan on the public response to dementia 2017–25, and includes indicator themes of: risk reduction; policy and legislation; diagnosis, care and treatment; research; carer support; awareness and friendliness; and information systems. It is anticipated that many data improvement activities proposed in this plan will contribute to international reporting obligations.

The Royal Commission into Aged Care Quality and Safety

The Royal Commission into Aged Care Quality and Safety (the Royal Commission) led to several recommendations (Royal Commission 2021) and a government response (Department of Health 2021a). The recommendations sought improvements to:

• fragmented and incomplete data
• lack of common data definitions
• limited interoperability between systems
• use of electronic records and interoperability with My Health Record
• limited integration and analysis of data to inform a person-centred view across sectors
• limited access to data.

Specific Royal Commission recommendations regarding dementia include:

• Recommendation 15: Establishment of a dementia support pathway that provides information, support, education and planning for care and respite.
• Recommendation 16: Specialist dementia care services and reviewing and publicly reporting on whether the number of Specialist Dementia Care Units established or planned to be established is sufficient to address need within the areas and populations they are designed to cover.
• Recommendation 80: Dementia and palliative care training for workers and implementing mandatory dementia care training for workers engaged in residential aged care and in care at home (Royal Commission 2021).

Specific Royal Commission recommendations regarding all data include:

• Recommendation 67: Improving data on the interaction between the health and aged care systems. This includes provision of aged care national minimum data sets (NMDSs) to the AIHW and a legislative framework for health and aged care data to be linked, shared and analysed to understand the burden of disease of current and prospective people receiving aged care and their current and future health needs.
• Recommendation 68: Universal adoption by the aged care sector of digital technology and My Health Record. Requirements for approved providers relating to digital technology and My Health Record will be included in the new Aged Care Act. The Australian Digital Health Agency would support aged care providers to adopt My Health Record.
• Recommendation 108: Data governance and a National Aged Care Data Asset.

Following the Royal Commission, the Department of Health, Disability and Ageing funded the AIHW to lead a program of work to improve aged care data. This included working closely with the Department on the development of the National Aged Care Data and Digital Strategy and continuing to support the Action Plan of the Strategy with development of the:

• Aged Care National Minimum Data Set (NMDS)  
• National Aged Care Data Asset (NACDA).

Aged Care Data and Digital Strategy 2024–2029

The Aged Care Data and Digital Strategy 2024–2029 outlines the Department of Health, Disability and Ageing's approach to developing data and digital foundations for the aged care system. The vision of the Aged Care Data and Digital Strategy (the Strategy) is to deliver the highest quality of person-centred care for older people while driving a sustainable and productive care and support economy through data and digital innovation. The Strategy aims to create a better-connected aged care sector by simplifying, digitising and automating points of connection between clients, providers, the software industry, and government. A key outcome of this involves data being shared and reused securely to support improvements to the aged care system, meaning that interoperable data systems and consistent data standards lead to better data for secondary research. The Aged Care Data and Digital Strategy Action Plan underpins the Strategy, outlining concrete actions to deliver the strategy’s vision. The aged care reform activities will be overseen by the Department of Health, Disability and Ageing, working closely with the AIHW and the Australian Digital Health Agency (ADHA). The Strategy aligns closely with other health and aged care strategies, plans and reform activities, including the National Strategy for the Care and Support Economy and the Data and Digital Government Strategy. The Strategy also complements two companion strategies: Digital Health Blueprint 2023–2033 and National Digital Health Strategy 2023–2028.

Aged Care National Minimum Data Set

A national minimum data set (NMDS) is a core set of standardised data elements agreed for mandatory collection and reporting at a national level. The Aged Care NMDS is being developed iteratively to improve consistency across the aged care data system. The use of items from the Dementia National Best Practice Data Set (NBPDS) and other established data standards continue to be considered in its development to ensure consistency across the broader health system.

The first iteration of the Aged Care NMDS data standards was released in June 2023. In recognition of the impact on the sector, the data standards are being implemented progressively from July 2023 onwards (AIHW 2025). The second iteration of the Aged Care NMDS, and the first Aged Care National Best Practice Data Set (NBPDS) were released in late 2025 to align with the start of the Aged Care Act 2024. The NBPDS items are recommended but not mandated for collection by the Department, making them ‘opt-in’ in the first instance, with a view to being subsequently incorporated into a future NMDS.  The Aged Care NMDS and the National Aged Care Data Asset have the potential to improve data on people with dementia who interact with the aged care system. The Dementia NBPDS and Aged Care NMDS support the National Health Reform Agreement commitment to ‘Work towards consistent application/interpretation of data across systems to assist understanding of linkages between data sets, establish sharing practices, explore viability of disability identifier in health data’.

National Aged Care Data Asset

AIHW’s National Aged Care Data Asset is an enduring linked data set that brings together de-identified person-level data collected across aged care, health and community service settings for aged care research purposes. It is available for researchers to access through the National Health Data Hub.  

The National Digital Health Strategy

The National Digital Health Strategy aims to provide data that are safe, seamless and secure to support evolving health and care to meet the needs of modern Australia (ADHA 2022).

The strategic priorities include:

1. Health information that is available whenever and wherever it is needed
2. Health information that can be exchanged securely
3. High-quality data with a commonly understood meaning that can be used with confidence
4. Better availability and access to prescriptions and medicines information
5. Digitally enabled models of care that improve accessibility, quality, safety and efficiency
6. A workforce confidently using digital health technologies to deliver health and care
7. A thriving digital health industry delivering world-class innovation.

This strategy is supported by the Framework for Action – an implementation plan which underpins and coordinates work that is already happening between governments, health care providers, consumers, innovators and the technology industry.

Department of Health, Disability and Ageing Data Strategy 2022–25

The Department of Health and Aged Care Data Strategy 2022–25 provides the overarching strategic direction to guide departmental data and analytics activities to ensure that resources are allocated efficiently to activities that will support evidence-based policy, programs and service delivery (Department of Health, Disability and Ageing 2022a). This strategy also reflects the need to maintain public trust by protecting the privacy and confidentiality of individuals and use data in the public interest.

National Preventive Health Strategy 2021–30

The National Preventive Health Strategy 2021–2030 aims to improve the health and wellbeing of all Australians by enhancing the focus on prevention and by building systems-based change over a 10-year period. The strategy aims to address the wider determinants of health, reduce health inequities and decrease the overall burden of disease (Department of Health 2021b). The strategy describes actions to decrease risk factors that are common to many chronic conditions including dementia. These risk factors include tobacco use, healthy diet, reducing alcohol use, increasing physical activity and promoting mental health.

A National Injury Prevention Strategy is in development and could be an enabler for change as brain injury (from diverse causes from sport-related concussion, through falls and motor vehicle accidents) is a risk factor for dementia.

2020–25 National Health Reform Agreement

The 2020–25 National Health Reform Agreement (NHRA) is an agreement between the Australian Government and all state and territory governments (Department of Health 2020). In 2025, all Australian governments agreed to extend the 2020-25 NHRA by a further 12 months to allow for continued discussion on a new multi-year agreement. The NHRA includes the following 6 long-term system-wide health reforms, which can be enablers for improvements in dementia care and dementia data: 

• empowering people through health literacy – person-centred health information and support will empower people to manage their own health well and engage effectively with health services
• prevention and wellbeing – to reduce the burden of long-term chronic conditions and improve people’s quality of life
• paying for value and outcomes – enabling new and flexible ways for governments to pay for health services
• joint planning and funding at a local level – improving the way health services are planned and delivered at the local level
• enhanced health data – integrating data to support better health outcomes and save lives
• nationally cohesive health technology assessment – improving health technology decisions will deliver safe, effective and affordable care.

The NHRA Long-term Health Reforms – Roadmap (Australian Health Ministers 2021) includes the key areas of reform:

• enhanced health data
• prevention and wellbeing
• interfaces between health, disability and aged care systems.

Interdependencies are recognised for these reforms, and the enhanced health data reform will enable the other long-term, system-wide reforms. Access to linked data that provide an end-to-end view of patient pathways will enable policymakers and governments to develop a more accurate model of the health system, to inform system design, funding and improved patient access and experiences. The focus of prevention should address risk factors associated with the development of dementia and the focus on wellbeing should improve quality of life for persons with dementia and their carers.

Reforms to the interfaces between health, disability and aged care systems will help monitor interface performance, help report on new and existing interface issues, and improve governance mechanisms to resolve issues. The interface reform area is linked to the enhanced health data reform given the need to link data across systems and ensure interoperability.

Australia’s Primary Health Care 10 Year Plan 2022–2032

Australia’s Primary Health Care 10 Year Plan 2022–2032 (Department of Health, Disability and Ageing 2022b) aims to strengthen primary health care as part of the health system and to provide an agenda for primary health care reform over a decade. Among the enablers of the plan are research and data, with continued investment in research and data essential to evaluating innovation and targeting investments to where they can deliver the greatest value to support quality, value-based care. Digital health infrastructure is a further foundation for reform and includes shared health records and interoperability.

The AIHW is working to improve primary health care data through the development of a Primary Health Care Information System and a National Primary Health Care Data Collection. This data collection is envisaged to contain reliable, detailed, high-quality data about primary health care (focusing on general practitioner (GP) activity initially but expanding into broader primary care areas such as nursing and allied health) (AIHW 2022) and aims to fill existing primary care data and information gaps which could help improve reporting on dementia diagnosis and management in primary care within the next decade. 

Research and public use of My Health Record data

My Health Record (MHR) is Australia’s national consumer-controlled electronic health record system. It provides a secure electronic record of a person’s medical history, stored and shared in a network of connected systems that bring key health information from these systems together and presents it within a single view. 

Australians can choose whether or not to have a My Health Record. They can also control who can access their information.

A person’s My Health Record can include Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data, pathology and diagnostic imaging information and reports, immunisation records, donor records, hospital discharge summaries, specialist letters and referrals, and health summaries entered by consumers and providers. 

All information interlinks with the health condition of the individual patient and can therefore be of great benefit for patients and health care providers alike in ensuring optimal care and health outcomes for individuals at the point of care (including dementia care). This type of use is termed ‘primary’ use. 

My Health Record information could also be used for research and public health purposes to improve health care and the health system in general. This type of use is often termed ‘secondary’ use. It could be particularly useful in research related to the early detection, treatment and management of dementia. 

The MHR data set is unique in that it contains ‘real-time’ data that are patient-centred, pre-linked, and content-rich. Established administrative health datasets are service-centric rather than people-centric, and there can be months and sometimes years of delays between data collection and data dissemination.

Accordingly, subject to appropriate data governance measures, privacy safeguards and technology being in place, the Australian Government has always intended to make My Health Record data available for approved uses by accredited researchers, public health experts and policymakers. (MHR registrants can always opt out of their data being used in this way).

Data not yet available for research and public health use

Although work is in progress (September 2025), My Health Record data are not yet available for research and public health use. The scale of the MHR dataset (over 26 million users and billions of records) is unprecedented in Australia, and there are several complex governance, legal, logistical and infrastructure challenges to overcome. This includes running an extensive program of consultation with stakeholders and the public. 

These measures will take some time to implement -- years rather than months – to deliver a program that meets community and stakeholder expectations while also producing useful benefits from research that cannot be found elsewhere.

The My Health Records Act 2012 requires government to develop a legislated Rule and appoint a Data Governance Board to manage research and public health use of MHR data. 

There are three agencies involved in implementing such a program:

• the Department of Health, Disability and Ageing, responsible for governance, policy aspects, and stakeholder management and communication 
• the Australian Digital Health Agency as MHR System Operator and responsible for establishing and operating the necessary digital health technical infrastructure 
• the Australian Institute of Health and Welfare as Data Custodian, responsible for ensuring the security, quality and usefulness of data before it is released for research projects.

National Disability Strategy

Australia’s Disability Strategy 2021–2031 is a national framework that sets out a plan for continuing to improve the lives of people with disability in Australia (DSS 2022a). Disability sector data improvements may impact how people with younger onset dementia obtain disability services.

Governments are committed to collecting and sharing relevant data to support effective monitoring and reporting of outcomes for people with disability to drive change. Australian state and territory data, for both disability-specific and mainstream service systems, will be essential for measuring outcomes and tracking the degree of change.

The National Disability Data Asset (NDDA) was developed through collaboration of Commonwealth, state and territory governments as a key program of work under the National Disability Strategy. The NDDA pilot showed the value of the NDDA to better understand how people with disability are supported through services, payments, and programs across multiple areas, through the linkage, improvement and sharing of de-identified data. 

The NDDA plans to make insights accessible while protecting privacy and safeguarding data. The AIHW is collaborating with state, territory and Commonwealth government to further develop the NDDA to link more data relating to people with disability, to provide a richer picture of the life experiences of people with disability (DSS 2022b). The NDDA is expected to improve the data available on the experiences and outcomes for people with disability who are impacted by dementia.

National Agreement on Closing the Gap 2020

The National Agreement on Closing the Gap 2020 outcomes include First Nations-led data, so that First Nations people have access to, and the capability to use, locally relevant data and information to set and monitor the implementation of efforts to close the gap, their priorities and drive their own development (Joint Council on Closing the Gap 2020). This outcome is supported by Priority Reform Four: Shared access to data and information at a regional level in the Closing the Gap Implementation Plan 2025. These data also support disaggregation by jurisdiction and Closing the Gap outcome areas. The AIHW supports the 2020 National Agreement on Closing the Gap by ensuring that our reporting includes analyses relating to First Nations peoples where data quality permits.

Key requirements to improve data

While the above initiatives all provide enabling support for better data collection and sharing, how these are interpreted and applied at places of data collection will be critical to the ability to commence new data collection and improve existing collections.

The monitoring of dementia in Australia is dependent on data from a wide variety of sources across government and the private sector that are collected and managed by numerous parties including: health service providers; individual consumers; health professionals; federal, state and territory governments; private health insurers; Primary Health Networks; statistical agencies; universities and research organisations; and non-government organisations. Therefore, improvements in dementia data require multi-sectorial efforts and collaborations.

The success of this plan (and improving data more broadly) is dependent on dedicated commitment to improve dementia data, systems for collection and storage, and usability of the data. A data collection requires:

• data governance
• systems for data collection that are: 
  • secure 
  • intuitive and easy to use
  • structured to use common data dictionary terms 
  • ideally include mandatory data items
• staff training resources to ensure consistent collection of data
• processes to ensure that data are high quality.

These factors complement the critical success factors identified for the National Digital Health Strategy (ADHA 2022), which include:

• trust and security assurance
• commitment, cooperation and collaboration across all governments
• establishment of legislative, regulatory and policy frameworks
• strong consumer and clinician engagement and governance
• effective governance and leadership. 

Data governance

Data governance is the ‘exercise of decision-making and authority for data-related matters’ (The Data Governance Institute 2022). It includes the processes, standards, policies, responsibilities and measures in place to ensure the efficient and effective management, availability, accessibility and security of data and that privacy is protected. Data governance describes the source of authority for making decisions about data, the roles/structures authorised to make decisions, and the basis upon which those decisions are made (AIHW 2023). Key elements of good data governance include people, policies, process and products.

High-quality data governance improves decision-making and enables collaboration across sectors. The AIHW data governance framework (AIHW 2023) provides specific information regarding data governance at the AIHW and data governance concepts more broadly. To support the AIHW’s legal, ethical and safe management of data requires a combination of supporting legislation, roles, policies, practices, standards, tools and technologies to deliver effective data governance arrangements.

Data quality – The Australian Bureau of Statistics framework

To ensure the improvement activities in this plan result in high-quality data for dementia monitoring and reporting, data will be assessed against the Australian Bureau of Statistics’ (ABS) Data quality framework (ABS 2015) prior to implementation in national dementia routine monitoring and reporting by the National Centre for Monitoring Dementia.

The ABS Data quality framework provides standards for assessing and reporting on data quality as well as the development of high-quality data collections. The Framework consists of 7 quality-related dimensions which should be considered in assessing data quality:

• institutional environment – organisational factors such as professional independence, impartiality and objectivity, resourcing, legislative requirements, quality commitment and data governance arrangements 
• relevance – how suitable the data are for their intended purposes, such as their scope and coverage, reference period, classifications, data items, and type of data available
• timeliness – how recent the data capture is compared to when the data can be used
• accuracy – how well the data reflect what is intended to be captured 
• coherence – the consistency of the data over time and how they compare to other available data of the same nature 
• interpretability – information available to support interpretation of the data
• accessibility – how well the data and their associated information can be accessed by the intended users, and the suitability of the medium in which the data are accessed.

Other data-specific enablers

Developments in artificial intelligence (AI) techniques applied to electronic health data have potential to enable more comprehensive and efficient coding of data. This should enhance the provision of dementia data from hospitals, primary care and other potential dementia data sources, while reducing the coding burden on health professionals.

The significance of dementia as a health and societal issue has led to significant dementia research investments in Australia and globally, which over time, should lead to benefits for people with dementia and their carers and provide improved data. The broad adoption of electronic medical records, along with standardised ways of collecting and sharing data with strict data governance protocols (as described in the above enablers), should provide improved data for research and reporting over the next decade.

Dementia prevention research may lead to programs and knowledge that delay the onset, decrease the severity, or avoid the development of dementia completely. Investments in Australian dementia research are occurring through the NHMRC and MRFF and other funding organisations. 

The publications from research into the causes of dementia may uncover other risk and protective factors to reduce dementia in the general population, and better quantify the effect of known factors. New treatments will be developed which will help understand the cause of different dementia types, and their treatment. These studies often accompany genetic or biomarker tests to identify patients with different risks of disease progression, suitability for different drug treatments, or levels of response to treatment. Should genetic, protein or imaging tests show predictive value, then this pathology data could contribute to dementia reporting. It should be noted that genetic information is sensitive personal information, and sharing of these types of data will require community consultation and trust, along with ensuring privacy and governance mechanisms, as for many other types of health information. This work will evolve alongside the MRFF Genomics Health Futures Mission, community awareness and engagement, and better understanding of the societal and economic value of genomics in health care priority (Department of Health 2021c).

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