National Dementia Data Improvement Plan 2023–2033

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 from 2022–23 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 medical researchers collect, share and analyse data more widely (DoHAC 2022a), which may lead to improvements in dementia data.

The Australian Dementia Network’s (ADNeT) Clinical Quality 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 Clinical Quality Registry was announced in the 2023–24 budget (DoHAC 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 (DoH 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 DoHAC funded the AIHW to lead a program of work over 4 years from 2021 to improve aged care data. This includes the development of the:

• National Aged Care Data Strategy 
• Aged Care NMDS  
• National Aged Care Data Asset.

The National Aged Care Data Strategy (in development)

In response to the Royal Commission’s recommendations to improve aged care data, the AIHW and the DoHAC are partnering to develop the National Aged Care Data Strategy (AIHW 2022a). The National Aged Care Data Strategy describes the agreed vision for the future national aged care data system, including why data improvements are needed and how they will be implemented. Stakeholder consultation on the strategy occurred in 2022 and 2023, with release of the final version planned for late 2023. The aged care reform activities will be overseen by the DoHAC and the Aged Care Quality and Safety Commission, with aged care data improvement activities undertaken by the AIHW. The data strategy will closely align with other health and aged care strategies, plans and reform activities, such as the draft Aged Care Digital Strategy, Aged Care Quality and Safety Commission Digital Strategy and the ICT strategy 2022–25, which provides direction for how technology will support and shape changes. Digital transformation for the aged care sector 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 (DoHAC 2022b).

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 (AIHW 2022a) should create consistency across the aged care data system, and the use of items from the Dementia National Best Practice Data Set (NBPDS) and other established data standards was considered in its development, along with criteria to include data items in the NMDS, which is proposed to be added to over time (AIHW 2023). The Aged Care NMDS data standards were released in June 2023, to be followed by a 12-month implementation period so that data collectors can modify their current collections and systems in the implementation period (AIHW 2022a). Once implemented, 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 and Aged Care NMDSs 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

The National Aged Care Data Asset will be a multi-source enduring linked data set at the AIHW (AIHW 2022a) that integrates people-centred data related to aged care from aged care, health and welfare data sets.

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, healthcare providers, consumers, innovators and the technology industry.

Department of Health and Aged Care 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 (DoHAC 2022c). 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 (DoHAC 2022d). 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.

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

Australia’s Primary Health Care 10 Year Plan 2022–2032 (DoHAC 2022e) 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 2022b) 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. 

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 (DoH 2020). 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.

Australian Digital Health Agency activities and improvements to My Health Record

The Australian Digital Health Agency (ADHA) is the My Health Record system operator responsible for establishing the technical infrastructure required to support adoption and the efficient and secure sharing of My Health Record data for research and public health purposes, while AIHW is the My Health Record data custodian for research and public health purposes. The 2023–24 budget provides $429 million over 2 years to modernise My Health Record and provide a national repository platform that supports easier, more secure data sharing across all healthcare settings (DoHAC 2023).

The ADHA priorities (DoHAC 2022f) that can enable better dementia-relevant data include:

• respecting and caring for senior Australians – ensuring safe and effective transition of care for aged care recipients
• supporting rural, remote and First Nations communities to connect to their health information and make it available to their healthcare providers
• developing national clinical terminology and interoperability – developing standards and specifications to allow different health systems to work together to share accurate and comprehensive patient information to inform care decisions
• supporting digitally-enabled primary care – supporting effective telehealth and virtual care with real-time information exchange (such as electronic prescriptions and referrals for diagnostic imaging)
• supporting the next generation of My Health Record – working with health-care providers across the continuum of care to increase the sharing of core clinical content so information can be accessed when and where it is needed, including on a mobile phone. 

The ADHA also performs activities that enable data improvements in the health and aged care sectors by 

• designing, delivering and managing infrastructure, solutions and initiatives that provide access to, and promote adoption of, secure digital health services
• facilitating national digital health interoperability between health-care providers and the systems they use to improve the visibility of health information, leading to better decisions and health outcomes for consumers
• conducting train-the-trainer sessions and capacity-building workshops, to facilitate sustainable national digital health literacy and awareness.

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 over the next 10 years (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 Australian Government invested $15 million in a pilot of a National Disability Data Asset (NDDA) in partnership with state and territory governments, which 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 also plans to make insights accessible while protecting privacy and safeguarding data.

The AIHW is collaborating with partners to further develop the NDDA to 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 (DSS 2022b). The NDDA will provide valuable data in the future for reporting on the Outcomes Framework and is also 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 2023. 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.

Data Availability and Transparency Act 2022

The Data Availability and Transparency Act 2022 (Cth) establishes a best-practice DATA scheme for sharing Australian Government data, underpinned by strong safeguards and consistent, efficient processes (ONDC 2022a). 

The objectives of the Act are to:

• serve the public interest by promoting better availability of public sector data
• enable the sharing of public sector data consistently with the Privacy Act 1988 (Cth) and use of appropriate security safeguards
• enhance integrity and transparency in sharing public sector data
• build confidence in the use of public sector data
• establish institutional arrangements for sharing public sector data.

The DATA Schemehas safeguards that specify 3 data-sharing purposes that are relevant to dementia services and data: government service delivery, informing government policies and programs, and research and development (ONDC 2022b). Further safeguards exist around accreditation of users, data-sharing principles, data-sharing agreements, transparency and reporting, regulation and compliance, and privacy protections that work with the Privacy Act to protect personal information. 

Other data-specific enablers

Developments in artificial intelligence (AI) techniques applied to electronic health data should 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.

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 2021). 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 2021) 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.

Future potential data sources

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 (DoH 2021b).

ABS (Australian Bureau of Statistics) (2015) The ABS data quality framework, ABS website, accessed 6 July 2023.

ADHA (Australian Digital Health Agency) (2022) Australia’s National Digital Health Strategy, ADHA, Australian Government, accessed 17 May 2023.

ADNeT (Australian Dementia Network) (2023) The Australia Dementia Network Clinical Quality Registry, ADNeT website, accessed 24 May 2023.

AIHW (Australian Institute of Health and Welfare) (2021) Data governance framework, AIHW, Australian Government, accessed 17 May 2023.

AIHW (2022a) Data improvements: National Aged Care Strategy, GEN Aged Care Data website, AIHW, Australian Government, accessed 3 May 2022.

AIHW (2022b) Primary health care, AIHW website, accessed 3 May 2022.

AIHW (2023) Standardising aged care data: technical report on the development of an Aged Care National Minimum Data Set, AIHW, Australian Government, accessed 7 July 2023.

Australian Health Ministers (2021) National Health Reform Agreement (NHRA) – Long-term Health Reforms – Roadmap, accessed 17 May 2023.

Dementia Australia (2022) Mild cognitive impairment, Dementia Australia website, accessed 2 February 2023.

DoH (Department of Health) (2020) The National Health Reform Agreement, DoH website, accessed 17 May 2023.

DoH (2021a) Australian Government Response to the Final Report of the Royal Commission into Aged Care Quality and Safety, DoH website, accessed 16 May 2023.

DoH (2021b) Genomics Health Futures Mission, DoH website, accessed 17 May 2023.

DoHAC (Department of Health and Aged Care) (2022a) Research Data Infrastructure Initiative, DoHAC, Australian Government, accessed 28 July 2023.

DoHAC (2022b) Digital transformation for the aged care sector, DoHAC, Australian Government, accessed 16 May 2023.

DoHAC (2022c) Department of Health and Aged Care Data Strategy 2022–25, DoHAC, Australian Government, accessed 17 May 2023.

DoHAC (2021d) National Preventive Health Strategy 2021–2030,DoHAC website, accessed 17 May 2023.

DoHAC (2022e) Australia’s Primary Health Care 10 Year Plan 2022–2032, DoHAC, Australian Government, accessed 17 May 2023.

DoHAC (2022f) Australian Digital Health Agency, Budget October 2022–⁠23: Portfolio Budget Statements, DoHAC, Australian Government, accessed 17 May 2023.

DoHAC (2023) Budget 2023–24: Stakeholder Pack, DoHAC, Australian Government, accessed 16 May 2023.

DSS (Department of Social Services) (2022a) Australia’s Disability Strategy 2021–2031, DSS, Australian Government, accessed 17 May 2023.

DSS (2022b) National Disability Data Asset (NDDA), NDDA website, accessed 17 May 2023.

Joint Council on Closing the Gap (2020) Closing the Gap Report 2020, Department of Prime Minister and Cabinet, accessed 16 May 2023.

NHMRC (National Health and Medical Research Council) (2023) Dementia, NHMRC website, accessed 28 July 2023.

ONDC (Office of the National Data Commissioner) (2022a) Data Availability and Transparency Act 2022, ONDC website, accessed 17 May 2023.

ONDC (Office of the National Data Commissioner) (2022b) Introducing the DATA Scheme, ONDC website, accessed 28 June 2023.

Royal Commission (Royal Commission into Aged Care Quality and Safety) (2021) Final Report: Care, Dignity and Respect: Volume 1 Summary and recommendations, accessed 16 May 2023.

The Data Governance Institute (2022) Definitions of Data Governance, The Data Governance Institute website, accessed 28 July 2023.

WHO (World Health Organization) (2023) Global Dementia Observatory, WHO website, accessed 6 July 2023.