Overview of data improvement activities
To address the existing dementia data gaps and achieve the goals of this plan, the following pages outline what data improvement activities need to be undertaken for each data gap. Data improvement activities can be classified by:
- Data activity types (new, expansion, one-off, linkage, harmonisation, methods development or other)
- the activities priority rating (high, medium or low priority, based on selected criteria)
- who will lead the activity
The specific data improvement activities are mapped (in Table 4.2) to fill identified data gaps and will be aligned to the draft National Dementia Action Plan (NDAP) objectives and mapped to NDAP performance measures when these become available to inform policy and program development.
Data activity types
Data activity types can include:
- creation of a new data source, such as establishing a collection of new administrative data or conducting a new survey
- expansion of existing data collections, for example, by including additional dementia data items in an administrative or survey collection, or through increasing the sample size of an existing survey to facilitate analysis and reporting on people with dementia
- undertaking a one-off study, such as a small case study, to provide data that would help fill a key data gap or quality issue
- data linkage to integrate data from more than one existing data set to expand and enhance dementia data resources and facilitate validation of dementia estimates
- data harmonisation to improve the coherence of dementia data (such as through implementing standard concepts and classifications across data sets)
- development of data analysis methods to improve estimates of dementia, including improved estimates of dementia prevalence
- other activities that do not fit into the categories above.
Priority criteria and weighting
Activities were ranked according to how they aligned with filling data needs, how they provided foundational data to build from, their level of dependency on external factors, and how they could allow disaggregation by one or more priority population groups. The scoring criteria were:
- Alignment (0–4) – how an activity provides data to enable reporting of one or more NDAP performance measures (in development) or the needs for national dementia monitoring by the National Centre for Monitoring Dementia (NCMD) to inform policy, research, consumer or service planning needs
- 0 – poor
- 1 – less important gap
- 2 – moderately important gap
- 3 – highly important gap (or able to fill 2 data gaps which are individually scored ‘2’)
- 4 – critical gap (or able to fill 2 data gaps which are individually scored ‘3’).
- Foundational data (0–3) – an activity that provides data that are enduring or contribute to quality foundational structured data that can be used within or across data collections via linkages, or over time (as baseline data) for dementia monitoring
- 0 – not foundational
- 1 – method development (without foundational data collection)
- 2 – foundational data but do not provide enduring data and/or not appropriate for linkage or interoperability
- 3 – foundational and can provide linkage or interoperability.
- Dependency (0–2) – the level of dependency the activity has on the finalisation of other data improvement activities, governance, operational or legislative arrangements, or multi-sectorial collaboration
- 0 – highly dependent on external factors (for example, legislative arrangements, and/or multi-sectorial collaboration for data collection)
- 1 – intermediate level of dependencies (for example, dependent on one external data source)
- 2 – minimal dependencies, or provides pre-requisites for other data improvement activities that are needed to achieve the plan goals.
- Priority group data (0–1) – whether the activity contributes to improving information on dementia among one or more priority population groups
- 0 – unlikely
- 1 – likely.
The above criteria scores were added to provide priority scores from 1–10, with scores ≤4 considered ‘low’ priority, scores of 5–6 considered ‘medium’ priority, and scores ≥7 considered ‘high’ priority. Note that medium or low priority activities are still considered important for improving dementia data but may occur after higher priority activities or external dependencies have been addressed.
|Less important gap
|Moderately important gap
|Highly important gap (or 2 scored 2)
|Critical gap (or 2 scored 3)
|Foundational data with limitations
|Foundational to provide linkage or interoperability
|Minimal external dependencies, or addresses pre-requisites for other data improvement activities that address plan goals
|Priority group data
Other factors that may be considered for implementation are cost and time for completing the activity. All activities will not be able to be commenced at once and activities will be prioritised. Some activities will need to be completed before others and priority activities will be commenced as resourcing allows. Some activities will also vary in duration.
Time – the timeframe for completing the described activity once commenced.
- Short-term – less than 2 years
- Medium-term – 2 to 6 years
- Long-term – 6 years or more.
Time and cost have not been incorporated into the prioritisation matrix as those activities that take significant time and cost need to be considered on their merit before factoring timelines to meet objectives, budget, and value for money considerations.
Any additional activities identified through future consultation and emerging data development opportunities will also be considered, in line with the review points and assessments of data quality arising from the activities.
Who is responsible for undertaking data improvement activities?
The dementia data improvement activities identify a ‘responsible stakeholder’ that would lead the activity, recognising that multiple stakeholders may be involved in undertaking the activity. Several activities would be led by the AIHW NCMD, but others may be led by other government agencies, service providers and/or organisations that manage existing data collection or service programs, as well as research consortiums or researchers.
The NCMD is well placed to undertake a range of dementia data improvement activities due to their experience in accessing, analysing and reporting on dementia. AIHW houses, and is the data custodian of, many national data sets that can provide national dementia data and is an accredited data integration service provider for data linkage.
Future work under the NCMD data improvement stream will be directly informed by this improvement plan. Projects with an overall high priority rating will be prioritised by the NCMD in consultation with the Department of Health and Aged Care (department) and Dementia Expert Advisory Group and timeframes and funding limitations will be considered to progress this work to address NCMD, NDAP, policy and program needs.
The NCMD will administer funding from the department to undertake dementia data improvement activities via the Dementia Data Partnerships Projects program. This program is being established to fund external parties to undertake projects that will lead to tangible and practical steps in addressing key dementia data gaps. A range of projects will be considered for the Dementia Data Partnership Projects program. More detail regarding the guidelines to assess suitability can be found at Dementia Data Partnership Projects.
The Department of Health and Aged Care (department) is responsible for developing evidence-based dementia and aged care policies, funding dementia initiatives and programs (including the NDAP) and commissioning research to make sure information is available to make better decisions to support people living with dementia, their families and carers.
The department has a leading role in the continuation of funding for dementia monitoring and research, and ensuring dementia remains a policy priority on Australia’s health and aged care agenda. However, the department is also responsible for leading specific data improvement activities related to improving data collection in programs they manage. For example, they would be responsible for implementing training for assessors completing aged care assessments to improve capture of dementia in current assessments, any changes to Medicare Benefits Schedule (MBS) items to specify dementia screening or Performance Improvement Program changes to improve reporting.
Key service providers include Dementia Training Australia (DTA), Dementia Support Australia (DSA), Dementia Australia, and providers of care in the disability, community and residential aged care sectors. DTA is a network of dementia specialists that work closely with DSA and Dementia Australia to provide education and training to all people working with or caring for people with dementia. DSA provides key national support services that include the Dementia Behaviour Management Advisory Service, Severe Behaviour Response Teams and a Needs Based Assessment program to determine eligibility for the Specialist Dementia Care Program. Dementia Australia provides the National Dementia Helpline, advocacy, information and events.
Services are also provided through general (non-dementia specific) providers such as carer organisations, medical and health professionals, and social service providers.
Key service providers for people living with dementia and their carers may be responsible for leading specific data improvement activities related to improving data collection in programs they manage.
The Australian Bureau of Statistics (ABS) is Australia's national statistical agency, providing trusted official statistics on a wide range of economic, social and population matters. It provides statistics that show variations by geography, sex, age and income and specific surveys such as the Census of the whole population and representative surveys such as the National Health Survey and Survey of Disability, Ageing and Carers (SDAC). The ABS also has a key role in bringing together a range of data sets through data linkage, such as the Multi-Agency Data Integration Project (MADIP), which is a secure data asset combining information on health, education, government payments, income and taxation, employment and population demographics.
Australian and international dementia research is being performed by a range of universities and researchers. Many of these are funded through the National Health and Medical Research Council (NHMRC), Medical Research Future Fund (MRFF) or the Dementia Australia Research Foundation.
The following pages present the 14 data gaps and outlines specific data improvement activities under each gap. These activities would improve the available evidence on dementia that is needed to improve the outcomes or experiences of people with dementia and their carers.