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
- level of investment
- timeframe
- who will lead the activity.
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.
Level of investment
The level of investment required to complete each activity is estimated. Investment may vary based on who is conducting the activity and what other related activities have been completed.
The level of investment is broadly categorised as:
- Low – typically these activities can be conducted with existing data.
- Medium – activities may require increased investment for processes such as methods development or establishment of a new data collection.
- High – activities that require greater resourcing, consultation, or development of a large-scale and/or complex data collection.
Timeframe
Another consideration for implementation is the time needed to complete the activity. Not all activities will be able to commence at once; activities will be prioritised as some activities will need to be completed before others and activities will commence as resourcing allows. Some activities will also vary in duration.
The timeframes for completing the described activity once commenced are:
- Short – less than 2 years
- Medium – 2 to 6 years
- Long – 6 years or more.
Who is responsible for undertaking data improvement activities?
The dementia data improvement activities identify the ‘responsible stakeholder(s)’ that would lead the activity. Several activities would be led by the Australian Institute of Health and Welfare (AIHW) National Centre for Monitoring Dementia (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.
Work under the NCMD data improvement stream will be directly informed by this improvement plan. Projects will be prioritised by the NCMD in consultation with the Department of Health, Disability and Ageing and Dementia Expert Advisory Panel, with consideration of:
- alignment to the NDAP, the key goals of this plan, NCMD national dementia monitoring needs and policy needs
- ability to provide foundational or enduring data that can be used in linkages and/or over time
- dependency on other activities, governance, operational or legislative arrangements, or collaborations
- ability to contribute information on dementia among priority populations
- timeframe and funding limitations.
Below are some examples of responsible stakeholders for dementia data improvement activities.
The NCMD administer funding from the Department of Health, Disability and Ageing to undertake dementia data improvement activities via the Dementia Data Partnerships Projects program. This program funds 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, Disability and Ageing is responsible for developing evidence-based dementia and aged care policies, funding dementia initiatives and programs (including the NDAP) and commissioning research to ensure information is available for better decision making 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.
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 Person Level Integrated Data Asset, 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.