From 1 January 2026, the National Stroke Data Linkage Interest Group will transition to the Australian Cardiovascular Data Linkage Interest Group
Since 1999 the government has invested substantial funds ($1 billion per year) for enhanced models of primary care that are characterised by multidisciplinary care and self-management support. Despite these investments, a large-scale population-based evaluation of the effectiveness of these primary care models has not been performed in Australia. Such an evaluation is needed to determine whether these models of care really do improve patient health outcomes and are cost effective.
A comparative effectiveness study of these Medicare-funded models of care, using a population-based cohort design will be performed. The linked data will enable us to assess:
a) the influence of enhanced models of primary care on hospital contacts, survival and quality of life following stroke. A full economic evaluation will also be undertaken.
b) the effect of primary healthcare models on rates of hospitalisations and emergency department presentations among stroke patients
c) the cost effectiveness of primary healthcare models.
The comprehensiveness of these data will allow an assessment of the effectiveness of these enhanced models of primary care within the context of "real world" healthcare provision. A multidisciplinary reference committee will be used to contribute to the interpretation of the results and assist with recommendations for policy and practice improvements. This will provide a qualitative approach in addition to the quantitative analysis. Results will provide information for guiding uptake of appropriate models of care and guiding health policy reform at the primary care level to optimise outcomes for those with chronic disease and stroke, as well as maximising the use of limited healthcare resources.
Primary Cohort
25,000 AuSCR registrants (years 2012 to 2016)
Datasets included in the linkage
● AuSCR (primary dataset)
● National Death Registry (mortality)
● Hospital admission databases
● Emergency department presentation databases
● Pharmaceutical Benefits Scheme
● Medicare Benefits Schedule
● Survey of subset of patients (n=1,000)
States included
● Queensland
● Victoria
Data access and storage
Data accessible via Secure Unified Research Environment (SURE)
Project start date
2018
Project end date
2021
Contact persons
Prof Nadine Andrew (Primary Chief Investigator)
E: monique.kilkenny@monash.edu
Funder
National Health and Medical Research Council project grant
In Australia approximately 50,000 people suffer a stroke each year. It has been reported that there is substantial variation in the quality of care received by patients with stroke in hospitals across Australia. As part of the Stroke123 study, the Australian Stroke Clinical Registry (AuSCR) was linked with data from routinely collected health information systems to enhance methods of monitoring and describing care variability and differences in patient outcomes. This approach is of particular value in stroke care, since multiple interactions across healthcare facilities and jurisdictions are common and it is inefficient to collect these data multiple times when they are readily available in different datasets.
The aims of the Stroke123 data linkage substudy are to:
a) determine how to achieve reliable data linkage between an external (non-government) registry and hospital administrative datasets across multiple states
b) assess case-ascertainment in the AuSCR efficiently using state-level information instead of individual hospital information
c) assess the quality of stroke information by comparing AuSCR data with hospital admission data
d) demonstrate the value of comprehensive linked data in describing variations in the quality of acute stroke care by permitting investigation of a range of research questions
e) use the de-identified linked data to determine the costs of providing stroke care and describe any variations in costs which may be related to the quality of care.
The findings from this study will provide a platform for national roll-out of appropriate and enhanced data collection solutions linked to an effective model for improving clinical care and outcomes of stroke.
Primary Cohort
15,482 AuSCR registrants (years 2009 to 2013)
Datasets included in the linkage
● AuSCR (primary dataset)
● National Death Registry (mortality)
● Admissions
● Emergency
States included
● Victoria
● New South Wales
● Queensland
● Western Australia
Data access and storage
Data accessible via Monash University network
Project start date
2012
Project end date
2015 (Data available for analysis until Dec 2023)
Study contact
Prof Dominique Cadilhac (Primary Chief Investigator)
E: dominique.cadilhac@monash.edu
Funder
Four-year National Health and Medical Research Council Partnerships for Better Health grant
Data linkage of the AuSCR and AROC databases will be used to examine stroke recovery across the continuum of care and also to determine any differences in rehabilitation outcomes.
Information will be provided on rehabilitation outcomes, length of stay and speed of recovery for stroke patients captured on AUSCR who were admitted to inpatient rehabilitation. We expect to produce data on the differences in rehabilitation outcomes depending on age, sex and quality indicators of acute stroke care.
We will explore the complexity of linking these two data sets and aim to:
a) compare outcomes for those undertaking rehabilitation in networked rehabilitation facilities (on site or in related facility) compared to non-networked (off site) facilities
b) compare rehabilitation outcomes of those with longer versus shorter acute length of stays.
Primary Cohort
18,000 AuSCR registrants (years 2014 to 2017)
Datasets included in the linkage
● AuSCR (primary dataset)
● National Death Registry (mortality)
● Australasian Rehabilitation Outcomes Centre (AROC)
States included
● Victoria
● New South Wales
● Queensland
● Western Australia
● Tasmania
Data access and storage
Data accessible via Monash University network
Project start date
2018
Project end date
Ongoing linkages planned
Contact persons
Prof Monique Kilkenny (E: monique.kilkenny@monash.edu)
Funder
National Health and Medical Research Council Centre of Research Excellence in Stroke Rehabilitation and Brain Recovery
Acute stroke is complex and poor management including delays in accessing treatment can impact patient outcomes. The overall aim of this project is to quantify the impact of variances in pre-hospital and hospital management. The specific aims are to:
a) determine whether patients are being managed appropriately under a new ambulance clinical response policy implemented in October 2016 within Victoria
b) determine adherence to the national acute stroke care standards related to the pre-hospital and acute hospital phases of care
c) identify factors (patient, clinical and system) that may explain variances in acute management and subsequent differences in 90-180 day outcomes for patients who do and do not receive acute care according to the national standards.
Observational cohort study design using patient-level linked data from a national registry with ambulance presentations data from Ambulance Victoria. A controlled before-after design is used for Aim (a) with a historical period of 2013-September 2016. The richness and size of the combined datasets will enable fully-powered (>80%) analyses using multilevel, multivariable regression statistical models.
For the first time, we will be able to explore the impact of pre-hospital and hospital assessment and treatment times on patient outcomes at discharge and at 90-180 days post-stroke.
Primary Cohort
11,000 AuSCR registrants (years 2013 to 2017)
Datasets included in the linkage
● AuSCR (primary dataset)
● National Death Registry (mortality)
● Hospital admission databases
● Emergency department presentation databases
● Ambulance Victoria Database
States included
● Victoria
Data access and storage
Data accessible via Monash University network
Project start date
2018
Project end date
2019
Contact person
Prof Dominique Cadilhac (Primary Chief Investigator)
E: dominique.cadilhac@monash.edu
Funder
Stroke Foundation
The Shared Team Approach between Nurses and Doctors for Improved Risk Factor Management for stroke patients (STAND FIRM) was a clinical trial aimed at assessing whether risk factor management after stroke can be successfully improved.
In this clinical trial, 563 participants with stroke were recruited from four hospitals (The Alfred, Box Hill, Dandenong and Monash Medical Centre). Patients were randomly allocated to receive either an individualised management plan or usual care after a stroke (secondary prevention).
The Chronic Disease Management (CDM) Medicare items, which include increased Medicare-funded rebates for clinicians, are aimed at encouraging General Practitioners (GPs) to provide better management of risk factors in those with a chronic disease such as stroke, but there is limited evidence of its effectiveness.
The aims of this STAND FIRM data-linkage substudy are to:
a) describe the uptake of CDM plans within 12 and 24 months after stroke through data linkages between STAND FIRM (clinical trial) and the Medicare Benefits Schedule (MBS)
b) evaluate the effectiveness of CDM plans based on health outcomes (e.g. rehospitalisations (from STAND FIRM), death (NDI), etc.) at 12 and 24 months through data linkages between STAND FIRM and the MBS and National Death Index (NDI)
c) evaluate the effectiveness of secondary prevention medications prescribed according to guidelines based on health outcomes at 12 and 24 months through data linkages between STAND FIRM and the Pharmaceutical Benefits Scheme, Medicare Benefits Schedule and the National Death Index.
Primary Cohort
563 patients with stroke/TIA (years 2010 to 2013)
Datasets included in the linkage
● STAND FIRM data (primary dataset)
● Pharmaceutical Benefits Scheme
● Medicare Benefits Schedule
● National Death Index
States included
● Victoria
Data access and storage
Data accessible via Secure Unified Research Environment
Project start date
2018
Project end date
2020
Contact person
Prof Amanda Thrift (Primary Chief Investigator)
E: Amanda.thrift@monash.edu
Funder
Medical Research Future Fund
The SWANSONG Study aims to understand disparities in stroke risk factors, treatment and care, and outcomes between Aboriginal and Torres Strait Islander people and non-Indigenous Australians across South Australia, the Northern Territory and Western Australia.
Stroke is the leading cause of disability and the second biggest killer in Australia. An estimated 350,000 people in Australia live with the consequences of a stroke. The burden of stroke disease for Aboriginal and Torres Strait Islander people is higher than that for the non-Indigenous population. This data linkage project is a cohort study designed to:
a) analyse and understand stroke risk, and subsequent disability and death due to stroke in Aboriginal and Torres Strait Islander people
b) investigate stroke unit hospital access and thrombolysis therapy provision in Aboriginal and Torres Strait Islander people.
The outcomes from the project will be provided to local communities and local health authorities to influence policy.
Primary Cohort
Patients located across South Australia and Northern Territory
Datasets included in the linkage
● Hospital admission database
● Emergency department presentation database
● Mortality data
States included
● South Australia
● Northern Territory
● Western Australia
Project start date
2016
Project end date
2021
Contact persons
A/Prof Judy Katzenellenbogen
E: judith.katzenellenbogen@uwa.edu.au
E: lee.nedkoff@uwa.edu.au
Dr Tim Kleinig (Primary Chief Investigator)
Funder
Heart Foundation
Approximately 50,000 Australians suffer a stroke each year, with a lifetime cost per case of $86,840. Survivors of stroke are at increased risk of subsequent vascular events, including recurrent stroke (9% at 6 months). To reduce the personal and economic costs, we must find simple, individualised and efficient approaches to prevent further vascular occurrences. Although there are many proven therapies for preventing stroke recurrence (e.g. blood pressure lowering), uptake of treatments is poor.
The Chronic Disease Management (CDM) Medicare items, which include increased Medicare-funded rebates for clinicians, are aimed at encouraging General Practitioners (GPs) to provide better management of risk factors in those with a chronic disease, including stroke. These CDM items may provide a means to improve patient knowledge about risk factors, as well as knowledge about appropriate use of medications and changes to lifestyle factors to reduce the risk of further vascular events.
Adoption of CDM plans among GPs in their care of patients has risen in Victoria by 325% in the past 10 years (2007 - 2016) and 58% in the past 5 years (2012 - 2016).
We aim to determine in patients after stroke/TIA:
a) where there has been a change in GP use of CDM plans over time
b) the effectiveness and cost-effectiveness of CDM plans on long-term (5-year) health outcomes (e.g. recurrences, rehospitalisations, deaths) and prescription of secondary prevention medications
c) whether there is variation in clinical practice, and outcome, between rural and urban regions.
This planned data linkage will enable us to understand the changes that have occurred in use of the CDM items, and the impact that this has had on re-admissions following stroke, mortality, and use of secondary prevention medications. It will also enable us to determine whether the use of these CDM plans affects the utilisation of other healthcare resources. This would fill a critical evidence gap in understanding the benefit of CDM plans in stroke.
Primary Cohort
First-ever hospital cases of acute stroke/TIA (years 2006 to 2012)
Datasets included in the linkage
● Hospital admission databases (primary database)
● Emergency department presentation databases
● National Death Registry (mortality)
● Pharmaceutical Benefits Scheme
● Medicare Benefits Schedule
States included
● Victoria
● New South Wales
Data access and storage
Data accessible via Secure Unified Research Environment
Project start date
2019
Project end date
2022
Contact Person
Prof Amanda Thrift (Primary Chief Investigator)
Funder
Medical Research Future Fund (partial funding)
Our objectives are to:
a) determine the consistency of diagnostic codes over time in hospital morbidity data for subgroups of acute coronary heart disease (myocardial infarction, unstable angina, stable angina, other coronary heart disease) and chest pain and, from these, define subgroups that permit reliable analysis of trends in admissions and outcome;
b) examine trends in incidence and outcomes for defined subgroups of acute coronary heart disease and chest pain
c) recommend evidence-based methods from both linked and unlinked hospital and mortality data for monitoring trends in acute coronary heart disease using national data in collaboration with the AIHW.
Primary Cohort
Patients with coronary heart disease
Datasets included in the linkage
● Hospital admission database (primary database)
● Emergency department presentation database
Project start date
2015
Project end date
2019
Contact person
A/Prof Frank Sanfilippo
E: frank.sanfilippo@uwa.edu.au
Funder
National Health and Medical Research Council
There is strong evidence for selected drug therapy in the secondary prevention of heart disease. However, the level of long-term adherence with these drugs after hospital discharge is unknown. Furthermore, long-term outcomes in routine clinical practice will depend on the level of adherence in the population. Our study offers a unique opportunity to assess long-term adherence and its determinants, as well as long-term outcomes and cost-effectiveness, to evidence-based medication following discharge from hospital. We will use recently acquired linked datasets of State and Commonwealth records, including Pharmaceutical Benefits Scheme and Medicare Benefits Scheme data. We will examine three cardiac conditions: coronary heart disease, heart failure and atrial fibrillation. These are overlapping conditions, are age-related, common diseases and impose a large cost burden to society, governments and individuals.
Project start date
2014
Project end date
2019
Contact person
A/Prof Frank Sanfilippo
E: frank.sanfilippo@uwa.edu.au
Funder
National Health and Medical Research Council
Rheumatic heart disease is chronic damage to the heart valves caused by repeated bouts of acute rheumatic fever. Both are preventable, yet rates among Indigenous Australians are of the highest recorded. We propose to undertake the first multi-jurisdictional study of these conditions to determine trends in occurrence and evaluate the impact of existing interventions in Australia. Findings will be used to inform the development of a roadmap to remove RHD as a public health problem in Australia.
Project start date
2018
Project end date
2020
Contact person
A/Prof Frank Sanfilippo
E: frank.sanfilippo@uwa.edu.au
Funder
National Health and Medical Research Council