Completed projects
The following linkage projects were completed in 2011, 2012
and 2013. A list of projects completed in previous years is also
available.
A population-based examination of cancer in NSW farmers
A/Prof Tony Lower, University of Sydney
Australian farmers have significantly elevated rates of death
from prostate and lympho-haematopoietic cancers compared to other
Australians. This project is a population-based examination of risk
factors, incidence, screening, diagnosis, treatment and outcomes of
major cancers in NSW farmers. The study will draw on data
identifying those respondents that have indicated that they live on
a farm, within the 45 and Up Study. This study has four
components:
- A comparison of farm and non-farm respondents in relation to
screening behaviours and other matters relating to cancer
occurrence and control;
- Linkage to the NSW Pap Test Register to obtain a more complete
picture of screening behaviour of farm residents;
- Linkage to the NSW Central Cancer Registry and NSW Admitted
Patients Data Collection to ascertain issues related to diagnosis
and primary management of all cancers; and
- Linkage to the MBS, PBS, NSW Central Cancer Registry, NSW
Registry of Births, Deaths and Marriages and the NSW Admitted
Patients Data Collection to investigate treatment and survival in
the farm and non-farm cohorts of non-Hodgkins lymphoma and prostate
cancer.
Estimating the prevalence and incidence of cardiovascular
disease, chronic kidney disease and diabetes in NSW and WA, using
linked hospital and deaths data
Ms Anne Broadbent, Australian Institute of Health and Welfare
The National Centres for Monitoring Cardiovascular Disease,
Diabetes and Chronic Kidney Disease, located at the AIHW and funded
through DoHA, are responsible for monitoring patterns and trends in
cardiovascular disease, diabetes and chronic kidney disease in
Australia and for providing high quality, policy-relevant analysis
on all aspects of the three diseases. This project will use linked
hospital and deaths data obtained from NSW/ACT (NSW Admitted
Patient Data Collection, Australian Bureau of Statistics, ACT
Admitted Patient Collection) and WA. This project will provide
insight into the accuracy of current estimates of the
prevalence of CVD, diabetes and CKD and incidence of acute coronary
syndrome and end-stage kidney disease.
Incidence and prognosis of metastatic breast cancer in NSW:
Validation of data linkage methodology in cancer epidemiology
Dr Sarah Lord, The University of Sydney
This study aims to assess the completeness and accuracy of using
health record linkage to identify metastatic breast cancer events
in an existing health record linkage study cohort of women with an
initial diagnosis of localised or regional breast cancer, and to
assess the accuracy of the NSW Central Cancer Registry's
classification of disease stage at diagnosis. This study will
involve linkage of an existing clinical database with the NSW
Central Cancer Registry and the NSW Admitted Patient Data
Collection to form the 'validation' cohort, which will then be
linked to the original health record linkage study database. The
results of this validation study will strengthen interpretation of
the original study estimates of metastatic breast cancer incidence
and prognosis.
NSW Cancer Registry reporting project utilising linked
administrative data to examine care, treatment patterns and health
outcomes for people with cancer
Ms Deborah Baker, Cancer Institute NSW
The objective of this linkage is to develop a deidentified data
set with the NSW Central Cancer Registry and the Clinical Cancer
Registries, the Admitted Patient Data Collection, Emergency
Department Data Collection, NSW Registry of Births deaths and
Marriages death data, and the Australian Bureau of Statistics
mortality data. The linked data will enable significant improvement
in cross sectional and longitudinal evaluation and monitoring of
treatment and outcomes in people with cancer as recorded across
these data sets. Study design for reporting activities will include
patterns of care studies, cross sectional descriptive and
historical cohort study designs using linked records.
Development of a risk score predicting colorectal cancer among
Australian men and women in later life
Prof David Roder, University of South Australia
Colorectal cancer (CRC) is a leading incidence and mortality
cancer. Incidence rates vary widely and are thought to be
influenced by diet and other lifestyle factors. As a consequence,
CRC is thought to be amenable to prevention. Prioritizing
preventative initiatives and screening towards high-risk
individuals may enhance the cost-effective use of scarce health
service resources. There has been little research, however, on
development of risk models for predicting a person's absolute risk
of CRC. The main aim of this project is to develop a simple
practical and informative CRC risk model for predicting absolute
risk of CRC in later life, using data from the 45 and Up Study
linked to NSW death records, NSW Central Cancer Registry (CCR)
records and NSW Admitted Patients Data Collection (APDC) records.
Results will be of direct relevance for planning individual patient
care and service delivery in Australia, while also making a
contribution to world knowledge.
Patient waiting times at public hospitals and the demand for
private care
Prof Elizabeth Savage, University of Technology, Sydney
Reducing public hospital waiting times is a central issue in the
Australian health care debate. Subsidies to private health
insurance and increased expenditures to shorten waiting times both
aim to ease pressure on the public hospital system. However there
is no empirical evidence to evaluate alternative and possibly more
effective policies. This study aims to address this through the
linkage of records from the NSW Admitted Patient Data Collection,
Waiting Times Data Collection, Emergency Department Data
Collection, mortality registrations and the 45 and Up Study.
Specifically the study aims to develop:
- a descriptive econometric analysis of waiting times;
- a model to describe the demand for private health insurance and
public-private hospital choice; and
- an analysis of the impacts of waiting times on subsequent
health outcomes and health care expenditure.
This research will be the first internationally to develop a
model of insurance purchase and hospital choice which incorporates
expectations about waiting times. It will allow the researchers to
predict the outcomes of policies directed at private health
insurance or at expanded public hospital capacity.
Using novel record-linkage to assess the association between
maternal and newborn thyroid hormone levels and birth
outcomes
Dr Natasha Nassar, University of Sydney
Adequate maternal and fetal thyroid hormone (TSH) levels during
pregnancy are important for correct maturation of the central
nervous system of the fetus and subsequent neurodevelopment of the
child. Maternal or infant thyroid disease has been related to
long-term neurocognitive impairment in children, however the impact
of subclinical and subtle thyroid dysfunction is less
well-established. This study aims to assess the feasibility of
linking laboratory databases to routinely-collected birth and
hospital data for assessing the association between TSH levels and
adverse perinatal outcomes.
Health service use and outcomes following colorectal resection:
a population-based health record-linkage study
Prof Marc Gladman, University of Sydney
Surgical treatment for colorectal disease varies greatly
depending on the disease and its severity. Main indications for
colorectal resection include a range of conditions affecting the
bowel and rectum. Little is known about the characteristics, trends
and health service utilisation of patients undergoing colorectal
resection; and impact on their health outcomes. This study aims to
assess mortality, morbidity and health outcomes of patients
undergoing colorectal resection in New South Wales. The project
will involve analysis of record-linked data from the Admitted
Patient Data Collection, NSW Central Cancer Registry, NSW Emergency
Department Data Collection, NSW Registry of Births, Deaths and
Marriages (RBDM) and ABS Death Registrations. Findings will provide
important information on factors associated with health outcomes
following colorectal resection and health services use, and inform
future patient counselling and initiatives for improving health
service planning and provision of care.
The cost effectiveness of managing individuals at high risk of
melanoma in a High Risk Clinic, compared with standard care
Ms Caroline Watts, University of Sydney
The aim of this study is to determine if it is cost effective
from the perspective of the Australian health system to manage
individuals considered at high risk of melanoma, in a specialised
setting i.e. a high risk clinic, compared with standard care. A
clinic for individuals at high risk of melanoma was established at
Royal Prince Alfred Hospital (RPAH), Sydney in 2006 with the aim of
managing individuals at high risk more efficiently. It is
hypothesized that melanomas will be detected earlier and there will
be less excisions with a closely managed surveillance program. This
hypothesis will be evaluated using data from individuals attending
the high risk clinic at RPAH and data from the Melanoma Patterns of
Care Study, as well as linked data from the 45 and Up Study, the
Medicare Benefits Schedule (MBS), the NSW Central Cancer Registry
(CCR) and the NSW Admitted Patient Data Collection (APDC). This
research will provide evidence to allow the evaluation of costs and
benefits of the high risk clinic model and will have direct policy
implications for the management of individuals at high risk of
melanoma in Australia.
The Australian Perinatal mental health reforms: using
population data to evaluate their impact on service utilisation and
related cost-effectiveness
Prof Marie-Paule Austin, University of New South Wales
Mental health problems associated with the perinatal period are
recognised as a major public health issue with significant
morbidity and costs. The last decade has seen a burgeoning of
perinatal mental health initiatives in Australia, including the
National Perinatal Depression Initiative (NPDI), yet there is
currently a gap in the understanding of how well these initiatives
have met their goal of improving maternal and infant mental health
outcomes.
This project will examine the impact of reforms on maternal and
infant health outcomes, service utilisation and the likely
cost-effectiveness of these reforms through linkage of NSW health
records (Perinatal Data Collection, Admitted Patient Data
Collection, Registry of Births, Deaths and Marriages deaths
registrations), in addition to generation of perinatal-specific
Medicare Benefits Schedule summary data; economic and policy
analyses; and key stakeholder consultations.
The findings from this project will provide information for the
provision of effective mental health services to this vulnerable
population. It will put Australia at the forefront of policy
planning, analysis and cost-effectiveness evaluation in the field
of perinatal mental health.
Effectiveness of an early intervention trial to prevent
childhood obesity. Phase 2: Follow-up and cost effectiveness
analysis
Dr Alison Hayes, University of Sydney
The Healthy Beginnings trial aims to tackle the onset of
childhood obesity by means of home visits by early childhood health
nurses to first time mothers living in disadvantaged areas of
Sydney. The intervention phase, which has already taken place, is
during the infants' first two years of life. Phase 2 of the trial
involves follow-up to age 5 years including a cost-effectiveness
analysis of the intervention compared to normal care using linked
NSW (Admitted Patient Data Collection and Emergency Department Data
Collection) and Commonwealth (MBS and PBS) health records. Economic
evaluation will be carried out from the perspective of the health
care provider. The objectives are to establish cost-effectiveness
using a number of outcomes at different ages. Additionally, a
cost-utility analysis will examine incremental cost per QALY at 5
years. The study will establish effectiveness, cost-effectiveness,
sustainability, acceptability and the costs of rolling out the
intervention to a wider population.
Australian Longitudinal Study on Women's Health
(Data Linkage Project)
Dr Deirdre McLaughlin, University of Queensland
The Australian Longitudinal Study on Women's
Health (ALSWH) has been collecting information on the health and
wellbeing of Australian women since 1996. The overarching aim of
the ALSWH is to provide a strong, valid evidence-base which can be
used by Commonwealth and State Governments for prioritising health
policy and planning. To further advance this aim, this study linked
the ALSWH with several administrative datasets - NSW Admitted
Patient Data Collection, NSW Central Cancer Registry and the
NSW Perinatal Data Collection. The addition of these linked data
will enhance the ability of the ALSWH to deliver sound, up to date
information on women's health and will allow for validation of
ALSWH data collected on significant health events against official
records. These data, together with similar data obtained from other
Australian States for ALSWH participants will allow the researchers
to conduct longitudinal, epidemiological analyses using both survey
responses (self-reported) and objective measures of health.
Participant eligibility confirmation and
descriptive statistics for the NSW CLEAR study dataset
A/Prof Freddy Sitas, Cancer Council NSW
The NSW Cancer, Lifestyle and the Evaluation of
Risk (CLEAR) study, is a case-control study conducted by Cancer
Council NSW. The overall objective of the study is to assess
the relationship between various lifestyle and genetic factors and
risk of cancer in the NSW population. The study recruits patients
18 years or older diagnosed with any primary cancer within the last
18 months (cases) and their eligible cancer-free partners
(controls). Participants are asked to fill an extensive
lifestyle questionnaire and optionally provide a blood
sample. Bloods are separated into plasma, serum and buffy
coat and stored in the Cancer Council NSW Biobank. Further
details about the CLEAR study are available here: http://clearstudy.org.au
Annual linkage of the CLEAR participant data to the NSW Cancer
Registry, ABS mortality data and RBDM death registrations will
allow the researchers to confirm and update information regarding
cancer diagnosis and vital status for the study participants,
resulting in a complete and verified dataset.
Use of primary care, health events, health
services use and costs in the 45 and Up study
Prof Louisa Jorm, University of Western Sydney
This study will link data from the 45 and Up
study to a range of administrative datasets, namely admitted
patient, emergency department, cancer registry, mortality, MBS and
PBS data. Analysis of this linked dataset will provide
important evidence regarding the relationship between use of
primary care and subsequent health services use and health
outcomes, as well as comprehensive data about health service costs.
The contributions of person-, geographic- and service-level factors
to these relationships will be examined. When complete, the project
will provide data that are specific to the Australian context at
the same time as contributing to knowledge internationally.
Coming of Age Study: does the type of
hypertension in pregnancy determine future cardiovascular
risk?
Prof Annemarie Hennessy, University of Western Sydney
Preeclampsia remains a leading cause of maternal
morbidity and mortality and in Australia it affects up to 10% of
all deliveries. Preeclampsia can be defined as a multi system
disorder that is characterised by hypertension and affecting one or
more other organs. The underlying cause of preeclampsia is still
not fully understood but what is known is that it causes
endothelial damage which may increase the risk of these women
developing cardiovascular disease in later life.
Records for women giving birth at the Royal Prince Alfred
Hospital during the period 1980-1989 were linked to the
Admitted Patient Data Collection and mortality data.
Analysis of this linked dataset will allow the researchers to
determine if women who have experienced high blood pressure
complications in their pregnancy are at greater risk of developing
long term health problems, such as ongoing hypertension, heart
disease or cardiovascular disease, and have a higher mortality rate
than women who remained normotensive during pregnancy.
Can NSW Admitted Patient Data improve the
quality and coverage of the NSW Register of Congenital
Conditions?
Dr Lee Taylor, NSW Ministry of Health
The NSW Register of Congenital Conditions (RoCC)
is a statutory data collection under the NSW Public Health Act
1991. Under the Act, doctors, hospitals and laboratories are
required to report certain congenital conditions diagnosed during
pregnancy, at birth, or up to one year of age to the RoCC.
The RoCC is used to provide information to assist in
responding to apparent clusters of congenital conditions occurring
in the community, to identify changes in incidence that may require
investigation, and to monitor the occurrence of congenital
conditions for service planning purposes.
A recent review found that a proportion of congenital conditions
had not been reported to the RoCC. Linkage of the RoCC to the
Admitted Patient Data (APD) collection, combined with medical
record review, will enable the researchers to investigate the:
- number and type of congenital conditions reported to the APD
and not to the RoCC for 2009
- sensitivity and specificity of congenital condition codes on
the APD for registration on the RoCC
- quality of reporting of congenital condition codes on the APD
by comparing with the RoCC for cases which are reported on both
data collections
Aboriginal mortality in a New South Wales urban cohort
Prof Richard Taylor, University of NSW
The Aboriginal Medical Service Co-op Ltd, Redfern, (AMS) has
been providing medical care to Aboriginal clientele since its
inception in 1971. Through linkage of AMS records to the
Registry of Births, Deaths and Marriages and ABS mortality data,
this study will investigate sex-, age- and cause-specific mortality
rates in a primarily urban, entirely Aboriginal population spanning
almost forty years. This will provide a longitudinal analysis for
the first time of mortality and cause of death in a known
Aboriginal population of substantial size in New South Wales.
Comparison of Outcomes and Health Service Utilisation in Rural
Versus Urban Renal Failure Patients in New South Wales
Dr Sradha Kotwal, The George Institute
This study identified patients with End Stage Kidney Disease
(ESKD) and chronic kidney disease (CKD) in NSW from the Australia
and New Zealand Dialysis and Transplant Registry (ANZDATA) and the
Admitted Patient Data collection, respectively. Linked cancer
notifications, hospitalisations and death records were then
extracted for these patients to enable investigation of outcomes
and health service utilisation in those from rural compared to
urban centres.
Specifically, the study aimed to:
- Explore patterns of access to Renal Replacement Therapy (RRT)
and its differential use in rural and urban patients
- Compare outcomes (mortality, late dialysis preparation,
hospitalisation, length of stay) of rural versus urban CKD and ESKD
patients in NSW
- Explore the impact of additional chronic disease diagnoses
(e.g. cardiovascular disease, diabetes, and cancer) upon these
outcomes in CKD and ESKD patients.
This research will define the geographical distribution of CKD
and ESKD and the demand for RRT in the rural NSW population. It
will also delineate differences in nephrology service provision
between rural and urban settings along with the financial and
policy implications. This will allow us to design and implement
strategies to provide optimal health care in a rural setting in the
future.
Last days of life study: Patterns of health services use and
experiences of adult New South Wales residents in the year prior to
death
Prof Jane Ingham, Cunningham Centre for Palliative Care, Sacred
Heart Centre and Prof Dianne O'Connell, Cancer Council NSW
The aim of this study is to describe patterns of health services
use and experiences of adult residents of NSW during the year prior
to their death.
Adults who died in NSW during 2007 were identified from the
Registry of Births Deaths and Marriages death registration and ABS
mortality collections and their linked records from the NSW Central
Cancer Registry, Admitted Patient and Emergency Department Data
Collections were extracted. Analysis of these data will
provide information that can form a foundation for addressing the
future health services needs of people nearing the end of their
life across all areas of NSW.
Development and evaluation of composite clinical indicators of
hospital performance for comparative assessment of the quality of
surgical care for colorectal cancer
Prof Jane Young, University of Sydney
In Australia and internationally, there is evidence that
clinical care for colorectal cancer is highly variable and is often
not in accordance with evidence-based clinical practice
guidelines. To date, studies which aim to investigate
patterns of care have had to rely on surveys of clinicians or
medical record audits to collect clinical information. However, the
development of the Area Health Service-based Clinical Cancer
Registries in NSW now enables patterns of care studies to be
conducted using routinely collected data. This study aims to
link these Registries to the Central Cancer Registry, mortality
records, and Admitted Patient and Emergency Department data
collections to provide a comprehensive population-based dataset of
diagnosis, treatment and outcomes for people diagnosed with
colorectal cancer in NSW. Analysis of these data will
establish the degree to which patients' treatment and outcomes vary
between hospitals in NSW and identify causes of this
variation. Based on these findings, novel composite
indicators will be developed to monitor hospital performance.
Further research will investigate the impact of feedback of
composite indicators to colorectal surgical units for
quality improvement.
Reducing road traffic crashes through data linkage
Dr Rebecca Mitchell, University of NSW
Good quality data on road traffic injuries and factors leading
to vehicle crashes is essential to inform policy designed to reduce
the burden of road trauma. However it is well recognised that
comprehensive information on road traffic casualties can rarely be
obtained from a single data source. This study aimed to
address this through linkage of the Transport for NSW's Road Crash
Analysis System and CrashLink data collections to the NSW Emergency
Department Data Collection, the NSW Admitted Patients Data
Collection, NSW Registry of Births, Deaths and Marriages
deaths data and the Australian Bureau of Statistics Mortality data
file over a 9 year period. Analysis of this linked data
resource will provide a rich source of information not only about
the circumstances associated with a road crash, but also about the
nature and severity of the injuries sustained, treatment received
and outcome for the patient. This information will guide
approaches to injury risk management and road safety in NSW,
including policy development by relevant government
departments.
The impact of introducing Medical Emergency Teams on the
reduction of hospital mortality and other adverse events in
NSW
A/Prof Jack Chen, University of NSW
The high incidence of preventable adverse events and deaths in
hospitals has triggered initiatives to improve the quality of care
of acutely ill patients. These initiatives include the
introduction of medical emergency teams (MET), outreach services or
rapid response teams (RRT). These aim to identify seriously
ill patients earlier in order to activate a timely and appropriate
response and consequently improve patient outcomes.
In this study, linkage of hospital admission and mortality data
over a one year period (2008) will enable:
- Assessment of the effectiveness of the MET system by comparing
the incidence of mortality and other adverse events in hospitals
with and without a MET system;
- Reporting of trends and the epidemiology of key adverse events
and patient safety indicators in all NSW hospitals; and
- Understanding of possible variations in results across all
hospitals, which will assist in informing further improvement and
policy interventions
Interactions of Cancer & Chronic Kidney Disease
Dr Germaine Wong, Centre for Kidney Research, The Children's
Hospital Westmead
Previous work by this research team has shown that people with
chronic kidney disease (CKD) experience a two and threefold
increased risk of cancer at most sites compared with the general
population, and that the increased risk begins in people with mild
to moderate kidney disease. However, the relationship between
progression of CKD over time and the effect of mild to moderately
reduced kidney function on cancer specific mortality remains
unclear. Record linkage between data from the Blue Mountains
Eye Study (a population-based cohort study) and the NSW Central
Cancer Registry will allow determination of whether reduced kidney
function is an independent predictor for site-specific cancers and
overall survival among people with CKD
Mortality rates after major surgery in New South Wales
Prof Ian Harris, Liverpool Hospital
It is important for clinicians and patients to be aware of
surgical risks and the chance of adverse effects such as mortality,
particularly when making the decision to undertake surgical
treatment. Few studies have explored postoperative mortality rates
in Australia. This study will be an original retrospective
investigation exploring 30-day and 12-month post-operative
mortality for a group of selected high volume procedures. Data from
the NSW Admitted Patient and Emergency Department collections,
along with mortality data from the Registry of Births Deaths and
Marriages and the Australian Bureau of Statistics will be linked,
extracted and analysed to investigate the relationship between
mortality and institution, age and other sociocultural factors, for
each procedure.
Cancer comorbidity, treatment, survival and end of life care
for Aboriginal people in NSW
Prof Dianne O'Connell, Cancer Council NSW
Cancer is the second biggest killer of Aboriginal people and
their cancer death rate in NSW is approximately 60% higher than for
non-Aboriginal people. The Aboriginal Patterns of Cancer Care
project (APOCC) has collected medical treatment records for over
1300 Aboriginal people diagnosed with cancer in NSW between 2000
and 2010. This study will link datasets from APOCC, the NSW Central
Cancer Registry (CCR), hospital and emergency department episodes
and deaths, allowing for the first time, a description of the
relationships between cancer treatment, comorbidities, survival and
end of life care for Aboriginal people in NSW. This will
allow better planning, allocation and monitoring of cancer and
palliative care services for Aboriginal people.
Cause of death in men with prostate cancer: a population-wide
data linkage study
Dr David Smith, Cancer Council NSW
Too little is known about prostate cancer including its causes,
the merits of screening for it or the outcomes of treatment. Much
uncertainty stems from a lack of evidence about how deadly the
disease is. Each year approximately 3,000 Australian men die from
prostate cancer and a further 100,000 are living with the disease.
This project will answer important questions regarding prostate
cancer outcomes. It will 1) evaluate the hypothesis that "Men die
with prostate cancer rather than of prostate cancer", 2) Determine
whether the risk of death from suicide or heart disease is raised
in men after prostate cancer diagnosis, 3) investigate whether men
treated with hormone therapy are at higher risk of death from heart
disease and 4) Determine whether men who report having PSA tests
have lower risks of death from prostate cancer, 5) explore
associations between statin use and outcomes for prostate
cancer.
Each of these questions will be answered using linked data from
the NSW Central Cancer Registry, the NSW Department of Health
Admitted Patient Data Collection, Medicare, Pharmaceutical benefits
scheme, the Register of Births Deaths and Marriages and Australian
Bureau of Statistics mortality data, the 45 and Up Study and the
NSW Prostate Cancer Care and Outcomes Study.
An evaluation of the effectiveness of a statewide program of
free pertussis vaccination of household adult close contacts for
protecting infants against pertussis (the "cocoon strategy") in
NSW
Prof Peter McIntyre, National Centre for Immunisation Research and
Surveillance of Vaccine Preventable Diseases
This study aims to evaluate the effectiveness of a
state-wide program of free pertussis (whooping cough) vaccinations
to parents, siblings and other household carers in providing
protection against severe pertussis in infants too young to be
immunised themselves. Using linked data from the Notifiable
Conditions Information Management System, Perinatal Data Collection
and mortality records, this research is required to provide
direct evidence of a protective benefit from cocooning and to
provide an estimate of the size of the benefit.
The results of this research are of direct interest to the NSW
Ministry of Health, as part of their evaluation of the 'cocoon
strategy'. The results are also expected to inform national
immunisation policy decisions on pertussis control by the
Australian Government, which takes advice from the Australian
Technical Advisory Group on Immunisation. If found to be effective,
this vaccination strategy may be considered for adoption as a
long-term measure for population pertussis control, with the
possibility of public funding under the National Immunisation
Program.
Investigating the elements of care and health care costs
associated with implementing chemotherapy protocols in NSW
hospitals: Linkage to NSW data sets
Dr Sallie-Anne Pearson, University of Sydney
The Pharmaceutical Benefits Scheme (PBS) is a federal program
providing public subsidies for medicines based on their efficacy
and cost effectiveness. The ecomonic evidence used to
determine PBS-listing is not acessible to health professionals and
other decision makers however, despite their vital role in the
efficient and equitable distribution of medicines, whether or not
these are PBS-listed. The aim of this study is to address
this through building a publically available economic evidence base
to assist decision-makers at hospitals and area health services
make evidence-based decisions about funding cancer medicines.
Participants in this study are patients undergoing chemotherapy
for breast, colorectal or lung cancer who consent to linkage of
their data from the NSW Cancer Registry, Admitted Patient Data
Collection, Registry of Births, Deaths and Marriages, Emergency
Department data collection, Medicare and medical records.
This linkage will enable the researchers to identify the
individual care elements involved in administering specific
chemotherapy treatment protocols, and estimate the costs associated
with each care element. The models developed will be publicly
available and have the flexibility to establish cost-effectiveness
of deploying cancer treatments in specific locations
Development of Diabetes Following Gestational Diabetes: A
Population Data Linkage Project
A/Prof Wah Cheung, Westmead Hospital
Gestational diabetes (GDM) is a transient form of diabetes
which occurs in pregnancy, but is associated with a higher risk of
diabetes later in life. This study aims to determine the relative
likelihood of developing diabetes for women who had GDM compared to
those who had normal glucose tolerance in pregnancy, in an entire
population. This will be achieved through linkage of data from the
NSW Perinatal Data Collection and the National Diabetes Services
Scheme.
Investigating best practice primary health care for older
Australians with diabetes using record linkage
A/Prof Elizabeth Comino, Centre for Primary Health Care and
Equity, University of NSW
In Australia most people access health care through community
based primary care settings such as general practice, community
health services, pharmacy, and allied health. However, as
there is no comprehensive source of data on service use in these
settings, primary care is underrepresented in health statistics,
and there has been limited exploration of processes of care for
people with chronic health care needs. The aim of this study is to
explore processes of primary health care (PHC) for people with
diabetes using record linkage. Records from a cohort of
diabetic participants enrolled in the 45 and Up study were linked
to the admitted patient, emergency department and mortality data
collections, and compared to a comparison group of participants who
did not have diabetes. The data are also being linked to the
Medicare Australia data through the Sax Institute. Analysis of the
linked dataset will allow investigation of primary health care
provision for older people with diabetes, identify the predictors
of provision of care, and explore the relationship between primary
health care and measures of health outcomes including quality of
life and hospitalisation.
Hormone therapies for early breast cancer: health outcomes and
policy implications in Australian clinical practice
A/Prof David Preen, The University of Western Australia
Breast cancer is one of the most common cancers and the second
leading cause of cancer-related mortality in Australian women.
Clinical trials have shown that use of hormone-blocking drugs for
five years after removal of the initial tumour significantly
reduces breast cancer recurrence and mortality. However, there is
no evidence regarding the use of these therapies in Australian
practice. It is not known which hormone therapies or combinations
of therapies are used by Australian women, how adherent and
persistent women are with these therapies, or the effects on
long-term health outcomes such as cancer recurrence or mortality at
the population level. It is also unknown nationally or
internationally to what extent planned and unplanned switching
occurs between different endocrine therapies, or the impact on
outcomes.
This project will use demographic and health data from the 45
and Up Study, linked to NSW (Admitted Patient Data Collection,
Central Cancer Register, Register of Births, Deaths and Marriages,
and the Australian Bureau of Statistics mortality data) and
Commonwealth (MBS and PBS) health records, to examine how hormone
therapies are being used outside of trial conditions, in real-world
clinical practice. This study will evaluate the effectiveness of
the current National Health and Medical Research (NHMRC) guidelines
for treatment of breast cancer with hormone therapies in the early
and longer-term.
What are the clinical and biochemical determinants of health
service use by participants in the Hunter Community Study?
Prof John Attia, University of Newcastle
The Hunter Community Study is a population-based prospective
cohort study established to assess factors important in the health,
wellbeing, and social functioning of older Australians. The
participants were drawn from the Hunter Region of NSW, aged 55 to
85 years and have provided health data in the form of clinic
assessments, surveys and blood samples. The current study
will link the records of over 2500 of the participants to the
Admitted Patient Data Collection, the Emergency Department Data
Collection, the Central Cancer Registry and mortality
datasets. This linked dataset will allow the researchers to
identify and test the clinical and biochemical predictors of acute
public and private hospital service utilisation, and the reasons
for these visits in a representative sample of ageing
Australians.
An individual-level study of suicide method substitution over
time
Dr Matthew Spittal, Melbourne School of Population Health, The
University of Melbourne
This study will investigate patterns in the methods used in
suicidal acts (attempts and completions) in New South Wales, with a
view to advancing understanding about the potential for restricting
access to means to prevent suicide.
The cohort consists of individuals admitted to hospital for a
suicide attempt who survived, individuals admitted to hospital for
a suicide attempt who ultimately died by suicide, and individuals
who have never been admitted for a suicide attempt but have
completed suicide. Using this information the researchers
will be able to identify whether an individual uses the same or
different method for each successive suicide attempt, the number of
attempts made by each person, the time between each attempt, and
whether these vary by socio-demographic or clinical characteristics
of the individual. The study will inform questions about
optimal regulatory, health service and other interventions to
reduce suicide by restricting access to deadly means.
Risk management and funding structures: an econometric panel
data analysis of health insurance in Australia
Prof Elizabeth Savage, Economics Discipline Group, UTS Business
School, The University of Technology Sydney
Individuals differ in their health status and access to health
care, yet current funding arrangements take very limited account of
individuals' risk of high health expenditures. A series of
government reports have proposed taking greater account of
expenditure risk in the allocation of health subsidies
(Commonwealth of Australia, 2000, 2008 and 2009; Productivity
Commission, 2002). By estimating models of individual
risk and investigating deviations between current health care
subsidies and predicted risk, this study will produce the empirical
results necessary to guide health funding in the future.
Linkage of data from the 45 and Up Study to administrative health
records will be completed to enable these analyses.
Validation study of Aboriginal identification algorithms in the
APDC and ABS Mortality Data using the 45 and Up Study.
Prof Louisa Jorm, University of Western Sydney
Indigenous status is known to be under-reported in hospital and
deaths data, creating difficulties for research which aims to
describe and understand Indigenous health issues using
administrative data.
The aim of this study is to develop an algorithm to improve
Aboriginal identification in hospital and death data by linking
them to the 45 and Up Study, a questionnaire with self-reported
Aboriginal status. Comparing identification in the APDC and
NSW mortality data with Aboriginal status in the 45 and Up Study
will allow the researchers to develop and test a set of algorithms
and investigate which performs best to increase identification
without resulting in too many false positives.
Commonly performed interventions in childbearing women and
related short and long term complications: An eight year data
linkage study
A/Prof Hannah Dahlen, University of Western Sydney
The aim of this project is to determine the rate of maternal and
neonatal morbidity and the economic consequences of commonly
performed interventions such as induction of labour, labour
augmentation and caesarean section.
The cohort for this study is all women who gave birth in NSW
during July 2000 and June 2008, with linked records for these
mothers and their babies extracted from the midwives, admitted
patient, mortality and congenital condition data collections.
This dataset will be used to examine short term outcomes such as
maternal death, type of delivery and reason for caesarean section,
and long term outcomes including death and readmission to hospital.
The results of this study will provide a better understanding of
the short and long term effects of medical and surgical
intervention in labouring women.
An analysis of the long term costs of disability arising from
the Vietnam War
Dr Philip Clarke, Applied Economics
This study involves the linkage of administrative data held by
the Department of Veterans Affairs with service information from
the Nominal Roll of the Vietnam War.
The research project has two main objectives:
- To gain an understanding of factors (including war service
history, age at and duration of deployment) that influence the rate
and progression of veterans applying for war-related disability
pensions; and
- To estimate the lifetime health and pension costs of Vietnam
veterans and separate these costs by level of disability.
Such estimates are intended to inform long-term resources
requirements associated with the Vietnam War and potentially, more
recent deployments.
The maternal health predictors of adverse birth outcomes
Dr Deborah Loxton, Research Centre for Gender, Health and Ageing,
University of Newcastle
Adverse birth outcomes such as premature birth, low birth weight
and congenital conditions can have a lasting deleterious effect on
both the infant and their families. While numerous
biologically based studies have investigated these outcomes, the
rate of stillbirth in Australia has remained unchanged over the
last 20 years and only small gains have been made in reducing the
rate of low birth weight and premature birth. This project
seeks to uncover both the long and short term risk factors for
adverse birth outcomes by utilizing a large representative
population survey dataset (the Australian Longitudinal Study on
Women's Health ) linked to hospital administrative data (the NSW
Midwives Data Collection, NSW Register of Congenital Conditions,
NSW Admitted Patient Data Collection, NSW Perinatal Death
Review, and mortality data from the NSW Registry of Births,
Deaths and Marriages and the Australian Bureau of Statistics.
Health record linkage is required so that a full range of risk
factors can be examined. While the ALSWH can provide the mother's
health, lifestyle and health behaviour history, the administrative
datasets provide additional health data and birth details that are
not available from the ALSWH. The findings of this project
will have important health policy implications at both a state and
national level, enabling better allocation of resources to those
most at risk of experiencing an adverse birth outcome.
Understanding the factors related to health care use associated
with falling in older people in NSW
Dr Rebecca Mitchell, NSW Injury Risk Management Research Centre,
University of NSW
Falls are one of the leading causes of injury morbidity and
mortality in older Australians, however there has been limited
exploration of rehabilitation outcomes following a fall - from the
circumstances of the injury event through to the injuries received,
the treatment provided and the use of rehabilitation services and
rehabilitation outcomes.
The aim of this research is to investigate and describe the
sub-acute and non-acute health service use of fallers and
non-fallers following emergency department presentation and/or
hospital admission. The study involves linking the Australian
National Sub-Acute and Non-Acute Patient NSW data collection to the
Admitted Patient and Emergency Department data collections.
The resulting deidentified dataset will be analysed to describe the
pattern of use of rehabilitation and other health-related extended
services by individuals who have experienced a fall-related injury
compared to non-fall related injuries.
Patterns of care study for treatment of cervical cancer in
Australia and construction of a detailed model of invasive cervical
cancer
Dr Karen Canfell, The Cancer Council NSW
This project aims to describe patterns of care and costs of
treatment for invasive cervical cancer in NSW, and to use the
information to develop a comprehensive model of treatment,
survival, and mortality from invasive cervical cancer. The
project will also involve hospital audits for patients who have
been treated in two large volume hospitals in NSW and Victoria to
define disease status by the most comprehensive FIGO staging
system, information which is not available in the Central Cancer
Registry.
Identifying predisposing factors for, and the consequences of,
common and emerging infectious diseases: A prospective cohort
study of adults
Dr Bette Liu, Faculty of Medicine, University of New South
Wales
This project aims to investigate the factors that predispose
adults to common 'notifiable' infections, and the impact these
infections have on health many years after the initial infection
occurred. The study will follow participants recruited into the 45
and Up Study, and use data linkage to determine whether a history
of exposure to different infectious agents affects risk of
hospitalisations, death from different causes or risk of cancer. It
will also investigate whether modifiable behavioural factors
increase the risk of developing such infections. The results
of the study should lead to a better understanding of the role of
many important infectious diseases on the health of Australian
adults.
The role of maternal cancer history in the occurrence of
stillbirth, adverse perinatal outcomes and the incidence of
childhood cancer in their offspring
A/Prof Christine Roberts, University of Sydney
Improvements in cancer treatments have contributed to a growing
population of cancer survivors, however evidence about the impact
following cancer treatment for girls and women is limited.
This study, linking data from the NSW Central Cancer Registry,
perinatal data and admitted patient data will enable the
researchers to investigate the extent to which maternal cancer
history influences the occurrence of stillbirth, adverse birth
outcomes and early pregnancy loss in NSW. The study will also
determine whether children of mothers with a history of cancer are
at higher risk of developing childhood cancer than offspring of
mothers with no cancer history.
Incidence of blood borne viruses and cancer and related
mortality among opioid dependent persons in pharmacotherapy
A/Prof Claire Vajdic, University of NSW
Opioid-dependent persons in pharmacotherapy in NSW have an
excess rate of death due to cancer, but little is known about
cancer incidence or the role of blood-borne viruses in risk of
cancer or death. This study will use linked data from the NSW
Pharmaceutical Drugs of Addiction System, the National Death Index
(NDI), Australian Cancer Database (ACD), NSW Notifiable Conditions
Information System, National Aids Registry and the National HIV
database to investigate cancer and blood borne virus (hepatitis,
HIV) incidence among treatment-seeking opioid dependent persons in
NSW. This knowledge will allow the development of appropriate
interventions and prevention strategies in this vulnerable and
marginalised population.
A second aim of this study is to quantify the sensitivity and
specificity of name-code versus full-name data linkage to the NDI
and ACD, the results of which will inform the interpretation of
future health data linkage based on name-coded records.
Establishing the factors that contribute to a
shortfall in evidence-based radiotherapy
Prof Geoff Delaney, Liverpool Hospital and University of NSW
Previous studies by this research group indicate
that 52% of all cancer patients should receive at least one course
of radiotherapy during their illness. In NSW however, 37% of all
cancer patients receive radiotherapy annually, suggesting that
there is a significant shortfall between what is considered optimal
and what is actually delivered.
The current study aims to establish and analyse a state-wide
database linking radiation oncology records from each NSW Radiation
Oncology Department to the NSW Central Cancer Registry data.
This will enable a better understanding of the areas of greatest
shortfall, characterisation of under−served groups, identification
of possible issues that might need to be addressed to improve the
uptake of radiotherapy, and more rigorous assessment of our model
of optimal radiotherapy utilisation, particularly where
discrepancies between our "ideal model of care" differs
substantially from current practice.
Modelling multiple radiotherapy treatment episodes for
benchmarking and service planning
Prof Geoff Delaney, Liverpool Hospital and University of NSW
Many cancer patients require multiple
radiotherapy treatments during their illness. Little is known about
retreatment rates however, due to difficulties following patients
over time to learn about the incidence and time course of relapse
events that would require retreatment. This study aims to
address this issue through the linkage of retreatment data from
Liverpool and Campbelltown Hospitals with the NSW Central Cancer
Registry. This will provide information about the number,
distribution and time course of radiotherapy retreatment episodes,
allowing the researchers to predict demand for retreatment and
allow more accurate and targeted planning for provision of these
services.
Optimal methods to be used when linking datasets that contain a
Statistical Linkage Key
Sanja Lujic, NSW Department of Health
The Home and Community Care (HACC) program is a major provider
of essential community care services to frail aged people, younger
people with disabilities, and their carers. A number of
researchers have expressed interest in using linked data from the
HACC minimum dataset (MDS) and the Admitted Patient Data Collection
(APDC) to examine issues including opportunities for intervention
to prevent potentially avoidable hospitalisations and improve
transitions of care between home−based and hospital services.
The ability to produce high quality linkages using these data is
unknown however, as the HACC MDS does not contain full names or
addresses, the personal identifiers usually used to produce high
quality probabilistic linkages. Instead, the HACC MDS contains
identifiable information in the form of a Statistical Linkage Key
(SLK). It is not known whether linkage using the SLK is adversely
affected by the limited availability of personal information, and
quantifying this effect is important for accurately interpreting
the results of future research using HACC data.
This study linked data from the APDC to a dataset resembling the
HACC MDS - the Registry of Births Deaths and Marriages (RBDM) death
registration data. RBDM data was used as a proxy for the HACC
MDS since it contains a large number of records, and like the HACC
MDS, is a person record-based database with a similar age
structure. Using this linked dataset the researchers
will:
- Determine the optimal strategy to be used when linking datasets
that contain limited identifiers
- Provide a recommended strategy to be used when linking HACC MDS
to the APDC
- Quantify the extent to which the recommended strategy may bias
the estimate of rates of hospitalisation for a range of conditions
among HACC clients
Augmenting date and cause of death information in the AHS
Clinical Cancer Registries using the NSW Central Cancer
Registry
Prof Geoff Delaney, Liverpool Hospital and University of NSW
The objective of this linkage is to augment date
and cause of death information in the Area Health Service (AHS)
Clinical Cancer Registries using information held by the NSW
Central Cancer Registry. This will enable AHS Clinical Cancer
Registries to achieve a range of operational and strategic
objectives, including monitoring survival outcomes for patients
included in each Registry by stage, treatment, facility and
clinician. This information will be used to will inform best
practice, plan and manage cancer services and support health system
change
Linkage of population health datasets to examine outcomes of
health care and for population surveillance of diseases and
conditions in NSW
Dr David Muscatello, NSW Department of Health
Linked NSW administrative datasets have become a critical
resource for the public health system to be able to carry out its
core business. These linkages allow the public health system
to better identify issues of population health importance, to plan
services or interventions to address these problems, and provide an
improved source of data allowing monitoring and evaluation of the
effectiveness of services and interventions.
Specifically, the linked datasets allow studies
including examination of clinical care pathways for stroke,
diabetes, asthma and other chronic diseases, surveillance of
infectious diseases, and patterns of re-presentation to ED,
readmission to hospital and mortality associated with particular
medical conditions and procedures.
Place of birth and perinatal outcomes in New South Wales
A/Prof Elizabeth Sullivan, University of New South Wales
This project aims to examine perinatal outcomes of women who
intend to give birth in different settings: birth centres, primary
maternity units, at home and in hospital labour wards. The
study will also evaluate whether place of birth has an influence on
the diagnosis and outcome of congenital anomalies, and examine
fetal growth parameters in relation to place of birth.
Records from the NSW Perinatal Data Collection, Admitted Patient
Data Collection, Register of Congenital Conditions, Perinatal Death
Reviews, ABS mortality data and the Registry of Births, Deaths and
Marriages death registration data will be linked for the period
2001-2009.
Epidemiology and outcomes in Ambulance treated patients in NSW:
the Australian Prehospital Outcomes Study of Longitudinal
Epidemiology (APOStLE)
A/Prof Paul Middleton, Ambulance Research Institute
Ambulance data in NSW is not currently linked with other
Health Department data, and therefore the outcomes for patients
treated by and/or transported by ambulance services are not
possible to assess. This study aims to address this by
linking the Ambulance Computer Aided Dispatch and the Patient
Health Care Record data to the NSW Emergency Department Data
Collection, the Admitted Patient Data Collection and mortality data
from the Registry of Births, Deaths and Marriages and the
Australian Bureau of Statistics.
The linked dataset will enable investigation into the
characteristics of patients suffering sentinel conditions, and to
develop performance metrics for the major problems paramedics
encounter: trauma, cardiac arrest and falls. This project
will illuminate the nature and extent of these issues to inform
decisions regarding performance measurement and safety and quality
improvement.
Best practice procedures and associated outcomes in
oesophageal, liver, pancreas and stomach cancer.
Ms Deborah Baker, Cancer Institute NSW
This study linked data from the NSW Central Cancer Registry,
Admitted Patient Data collection and NSW Pancreatic Cancer Network
to investigate mortality, morbidity and clinical outcomes of
surgical treatment of oesophageal, liver, pancreas and stomach
cancer. In particular the researchers will examine:
- factors associated with best practice procedures occurring
versus not occurring for oesophageal, liver, stomach and pancreatic
cancer
- how certain outcomes (morbidity, mortality, five−year survival,
length−of−stay, adverse events and re−admission rates) differ
between patients undergoing best−practice procedures and those who
do not undergo recommended best−practice procedures
- how geographic location, hospital type, hospital patient volume
and patient characteristics (such as age, sex, socio−economic
disadvantage, country of birth, area of residency, cancer stage
type and morphology) impact on the outcomes of interest
The Prism Study: A Program of Research Informing Stroke
Management
Dr Melina Gattellari, University of New South Wales
Approximately 50,000 strokes occur in Australia each year.
Stroke is the third most common cause of death and the most common
cause of disability. There have been a number of recent innovations
in stroke management, including the implementation of
multidisciplinary acute stroke units and new methods of clinical
treatment. Using linked data from the New South Wales Admitted
Patient, Emergency Department and mortality datasets, this study
aims to identify and assess the effect of such healthcare
characteristics on patient mortality, discharge destination,
recurrence of stroke and readmission to hospital. This program of
research will provide insight into the current management of stroke
in NSW, identify gaps in current care and outcomes, and inform
future initiatives for improving health service delivery,
organisation of stroke services and patient care.
Comprehensive linkage of maternal and infant health data for
monitoring health outcomes and planning of maternity services in
NSW
Dr Christine Roberts, NSW Department of Health; Kolling Institute
of Medical Research, University of Sydney
This study aims to make a complete assessment of maternity care
services in NSW for births up to one year following
delivery. The study aims to investigate maternal and infant
health outcomes for initial and subsequent pregnancies. Areas
to be assessed include:
- effectiveness of health services in reducing preventable
morbidity and mortality;
- impact of regionalised maternity care services on maternal and
infant morbidity and mortality;
- role of within-labour factors on outcomes for low risk
women;
- role of antenatal transfer in maternity care;
- recurrence of pregnancy conditions in a subsequent pregnancy,
and associated risk factors; and
- patterns of readmission and morbidity associated with
particular obstetric procedures, pregnancy conditions and
outcomes.
The CHeReL linked the following NSW datasets to enable this
program of research: the Midwives Data Collection, Registry of
Births, Deaths and Marriages birth, death and perinatal death
registration data, Australian Bureau of Statistics mortality data,
Admitted Patient Data Collection, Birth Defects Register and the
Perinatal Death Review Database.
