Data gaps and opportunities

Comprehensive, accurate and timely data are necessary for effective population health monitoring of heart, stroke and vascular disease. Although national health information collections continue to develop and improve, gaps still remain and the information that is collected is not always used to its full potential (AIHW 2020). In addition to data gaps, analysis gaps exist where data may be available but are not brought together efficiently.

Australian health data, however, are undergoing rapid change. Increasing digitisation of health information means more detailed data are being collected, expanding the possibilities for analysing and reporting. There is greater demand for information that is available in real time and at small geographic levels for service planning and delivery; easily accessible, flexible and interactive; comparable at national and sub-national levels; and which maintains privacy and confidentiality.

Data gaps and limitations

Current gaps relating to the health of people with heart, stroke and vascular disease include:

  • incidence and prevalence data for some conditions, and some health determinants
  • national, comparable and reportable data on primary health care activity and outcomes
  • person-centred data, including social and economic factors that affect health and patient pathways through the health system, across jurisdictional boundaries and between sectors
  • information on some population groups, including Aboriginal and Torres Strait Islander people, people with disability, culturally and linguistically diverse populations, refugees, and LGBTQI+ populations
  • data for smaller geographical areas to identify variations in health status and care by location
  • measures of health system efficiency and cost-effectiveness
  • indicators of health system safety and quality, including outcomes of interventions and patient rated outcome and experience measures.

Data developments and opportunities

Person-centred data

Data on the Australian health system is largely organised around occasions of service. Linking these data together and with other data including data from surveys allows for a richer understanding of how people and population groups interact with services and their health outcomes.

Following individuals from a diagnosis of cardiovascular disease, through interactions with the health system, to recovery, further illness or death improves our ability to analyse the development and trajectory of disease; the interaction of determinants and interventions; and the role and performance of the health system in managing, treating and preventing disease.

Current opportunities for improving person-centred heart, stroke and vascular disease data include:

  • collecting comprehensive GP data from the primary health care setting, which have the potential to provide a fuller picture of cardiovascular disease management, associated comorbidities, and long-term outcomes. A National Primary Health Care Data Asset is currently under development (AIHW 2021)
  • future health surveys measuring markers of cardiovascular disease and other markers of chronic disease and nutrition status will allow for the determination of population health trends and the calculation absolute cardiovascular risk in the Australian population. The Australian Bureau of Statistics is undertaking a comprehensive multi-year Intergenerational Health and Mental Health Survey in 2020–2023, which will include a biomedical component (ABS 2021)
  • better measurement of treatment times to thrombolysis for stroke, and to percutaneous coronary interventions for heart attack will provide key information to help improve quality of care and service delivery for individuals
  • a nationally agreed set of minimum data will enable cardiac rehabilitation services to collect and measure referral, participation, completion and readmission rates.

Digital health

Digital health is the use of technology by individuals and by clinicians and administrators to collect and share health information (ADHA 2021). Digital health technology has the potential to remove barriers to service access, for example through the use of telemedicine to provide specialist care to remote or isolated communities.

Digital health records can improve continuity in patient care through the use of electronic health records, such as My Health Record, and enhance clinical decision making and system-wide responses with real-time access to health information between services, sectors and jurisdictions.

Data linkage and integration

Data linkage, also known as data integration, brings together information from more than one source. Matching disparate pieces of information together can fill gaps in our knowledge on specific diseases, effectiveness and quality of health services, population groups and across the health and welfare sectors.

Two examples of recently linked data sets include the National Integrated Health Services Information Analysis Asset (NIHSI AA) developed by the AIHW, and the Multi-Agency Data Integration Project (MADIP) developed by the Australian Bureau of Statistics (ABS).

Some opportunities presented by health data linkage include:

  • better estimates of new cases of CHD and stroke. Current proxy measures rely on unlinked hospital and mortality data, exclude cases that do not result in hospitalisation, and cannot differentiate between first-time and repeat hospitalisations, and transfers
  • the prevalence of some commonly non-hospitalised heart, stroke and vascular diseases in the general population is also largely unknown, and is not well captured within currently available population health survey data
  • linkage between clinical quality registries and other administrative health databases allows for detailed investigation of the relationships between clinical measures and long-term health outcomes. An investment in scoping work will determine the benefits of establishing national enduring linkage to clinical quality registers to identify and assess data improvement opportunities
  • establishment of a large-scale heart, stroke and vascular disease data system, consisting of multiple administrative, clinical and electronic health data assets (Paige et al. 2021).