National Dementia Data Improvement Plan 2023–2033

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. 0 – poor
  1. 1 – less important gap
  2. 2 – moderately important gap
  3. 3 – highly important gap (or able to fill 2 data gaps which are individually scored ‘2’)
  4. 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. 0 – not foundational
  1. 1 – method development (without foundational data collection)
  2. 2 – foundational data but do not provide enduring data and/or not appropriate for linkage or interoperability
  3. 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. 0 – highly dependent on external factors (for example, legislative arrangements, and/or multi-sectorial collaboration for data collection)
  1. 1 – intermediate level of dependencies (for example, dependent on one external data source)
  2. 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. 0 – unlikely
  1. 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.

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.