Completed projects

The following linkage projects were completed in 2011, 2012, 2013, 2014, 2015 and 2016. A list of projects completed in previous years is also available.

Vasovasostomy and prostate cancer in vasectomised men.

Associate Professor James Boyd, Department of Health Services, Curtin University

While links between prostate cancer and vasectomy have been found previously, it has been suggested that men who receive vasectomies may receive more medical attention, which may be the true cause of higher diagnosis rates. The overall aim of this study was to determine whether vasectomy reversal has a protective effect on prostate cancer. Researchers investigated the risk of prostate cancer in those who have had a vasectomy reversal, removing the possible source of methodological bias and gaining a more accurate understanding of the effect.

The CHeReL identified the study cohort of men who had an in-hospital vasectomy or vasovasostomy (between 2001 and 2014) in the NSW Admitted Patient Data Collection (APDC) and linked the cohort data to other records in the APDC as well as data in the NSW Central Cancer Registry, NSW Registry of Births, Deaths and Marriages (Death Registrations), and Cause of Death Unit Record File.

This study will provide a more complete understanding of the relationship between prostate cancer and vasectomy; with the overall aggregate results (i.e. effect size) being used in an international meta-analysis conducted using the same study design in a range of jurisdictions.

Alcohol related problems and the burden on health and law enforcement services:  A retrospective data linkage cohort study.

Dr Amy Peacock, National Drug and Alcohol Research Centre, University of New South Wales

Alcohol consumption is a leading cause of death and disability globally, with increasing alcohol-related harms despite overall stable rates of consumption placing a greater burden on healthcare and law enforcement services. However, there is limited information on the magnitude of health and other risks for people with alcohol related problems, and the impact of these at the population level is poorly understood, particularly in terms of individual characteristics, and levels of morbidity, mortality, and other adverse outcomes such as engagement with the criminal justice system.  Medical conditions such as cancer warrant additional scrutiny with regards to understanding common comorbidities alongside alcohol use problems.

This project will address key gaps in our understanding of mortality, morbidity, offending and incarceration amongst people with an alcohol-related problem. Specifically it will describe the numbers, characteristics and service settings for people presenting to healthcare services with an acute alcohol harm or problematic alcohol use; and identify rates and predictors of mortality, morbidity, offending and incarceration. It will also explore the comorbidity of alcohol use and cancer, predictors of developing cancer, and mortality due to cancer, to identify where a cancer diagnosis fits in the trajectory of alcohol related problems.

The CHeReL Linked records from the NSW Admitted Patient Data Collection and the NSW Emergency Department Data Collection to identify a cohort of people with at least one emergency department or hospital presentation for alcohol related harm. These records were then linked to the NSW Re-offending data based from the NSW Bureau of Crime Statistics and Research, plus the NSW Central Cancer Registry, the NSW Mental Health Ambulatory Data Collection, the NSW Registry of Birth Deaths and Marriages death registrations, and the Cause of Death Unit Record File.

Findings from this project will lead to improved knowledge regarding alcohol related harms. Results will guide policy to routinely implement screening and intervention in healthcare settings and enable health professionals to better identify those at risk of adverse outcomes. Findings will also highlight the potential protective effects of mental health treatment in the community and areas where prevention efforts can be directed.

Exploring the relationship between social care, primary & secondary health service use and adverse health outcomes.

Dr Peter Lewis, Central Coast Local Health District

Integration between health services on the continuum of care can lead to improved health system efficiency and improved health continuity, quality and outcomes for the patient. The ‘NSW Integrated Care Strategy’ emphasises locally-led models of integrated care, with Local Health Districts (LHDs) partnering with other agencies, with joint governance, shared financial incentives and shared IT systems. The Central Coast LHD is exploring integrated care among social care providers, general practice and LHD services, with an area of focus on older people and the chronically ill.

By investigating patterns of health and community service use, demographic characteristics and factors associated with service use, this project aims to develop a series of predictive models of impending emergency hospital admission, emergency department attendance, residential aged-care admission, or a significant change in health state or death. These indicators of declining health can then be used to develop and evaluate pre-emptive interventions to prevent unplanned hospital admissions and attendances, declining health status or unexpected death.

Using participants in the 45 and Up Study as the cohort, the CHeReL linked records to the Home and Community Care data for NSW, the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, and the NSW RBDM death data. Department of Human Services Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data, available from the 45 and Up Study, were also obtained.

Findings from this study will contribute to the understanding of health and community services use, and will be used to inform the development of early prevention interventions for people who are identified as being on a declining health trajectory. More broadly findings will contribute to the implementation and evaluation of the NSW Strategic Framework for Integrated Care.

The HIV Prevention revolution: Using the molecular epidemiology of HIV transmission in NSW to inform the Public Health Response to HIV prevention.

Professor Anthony Kelleher, The Kirby Institute

The NSW Ministry of Health has set a target to virtually eliminate HIV in NSW by 2020. A state-wide HIV genotype database has been established to define past trends in HIV subtypes, monitor for emerging drug resistance and understand factors relating to transmission of new infections. The addition of clinical and epidemiological data will greatly enhance the utility of this data base.

To facilitate this project the CHeReL linked data from the three reference laboratories in NSW which perform HIV Genotypic Antiretroviral Resistance Testing (GART), to the NSW HIV administrative data set with enhanced surveillance data. The establishment of this data set will enable the ascertainment of the proportion of transmissions arising from early infections, where HIV viral load is high; investigations of the characteristics of transmission networks in NSW; and will identify changes in drug resistance profiles and subtype diversity in NSW.

This knowledge will provide a better understanding of the contribution of acute infections to new transmissions in the NSW epidemic and will help to focus the emphasis of various strategies to reduce HIV transmission, which is an essential component of the HIV prevention response. 

NSW and ACT Cancer Registry health system performance reporting utilising linked administrative data to examine care, treatment patterns and health outcomes for people with cancer in ACT and NSW.

Ms Deborah Baker, Cancer Institute NSW

This project sought to establish a linked data set for operational reporting of cancer outcomes in NSW and the ACT. As part of the current and subsequent Cancer Plans for NSW, there is a need to develop and monitor key indicators for cancer control – including operational, program and performance monitoring and evaluation, quality improvement, health services planning and evaluation, and benchmarking against best practice. The complexity of the health system for people with cancer means that people are treated in multiple settings, and their information is collected in numerous administrative data collections, making it difficult to develop a complete picture of the patient’s traverse through the health system during and after treatment.

The NSW and ACT Cancer Registries formed the cohort for this program of work. In addition to this, cases with Hepatitis C from the NSW Notifiable Conditions Information Management System and the ACT Communicable Notifiable Diseases Management System, plus all records from Breast Screen NSW and the NSW Pap Test Register, are included in the cohort. The CHeReL linked the cohort cases with the NSW Admitted Patient Collection, NSW Emergency Department Data Collection, NSW RBDM death registrations, NSW Cause of Death Unit Record File, ACT Emergency Department Information System, ACT BDM death registrations, ACT Cause of Death Unit Record File, ACT Admitted Patient Care, and the NSW Retrospective Radiotherapy Data Set. Identifiers were sent to the Australian Institute of Health and Welfare for linkage to the National Death Index. Permission is also in progress for the relevant Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data from the Department of Human Services.

This large complex linked data set will be pivotal to reporting on progress against the NSW Cancer Plan and findings will be used to ensure that cancer care pathways are appropriate and treatment for people with cancer in NSW remains world class.

Determinants of health disparities in women with chronic heart failure: An investigation of risk characteristics, hospital admission and health outcomes of older women with chronic heart failure.

Dr Sungwon Chang, University of Technology

Chronic heart failure (CHF) is a common, deadly and disabling condition that is costly, requiring frequent hospitalisation and ongoing symptom management. Recent studies have suggested sex differences in the underlying aetiology, epidemiology and outcomes of CHF patients. CHF seems to affect women at an older age with greater incidence of co-morbidities, and whilst they have better survival from CHF than men, they have a poorer quality of life with more symptoms and limitations in physical functioning. Despite this, there is evidence that women are often undertreated. Overall CHF in women is poorly understood both in pathophysiological processes, patterns of health service utilisation and models of care development.

The aim of this project is to describe patterns of care and to identify risk characteristics associated with hospital admission and mortality in older women with CHF. Using participants in the 45 and Up Study, the project aimed to examine trends in hospitalisation, health service utilisation and mortality; and describe the socio-demographic, behavioural and lifestyle characteristics predictive of CHF in women aged 45 years and over. A risk prediction model of CHF hospitalisation and mortality, mediated by health service utilisation, will also be developed.

The CHeReL linked records from the 45 and Up Study to the NSW Admitted Patient Data Collection, and the NSW RBDM death data. Records obtained from the 45 and Up Study included Department of Human Services Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data.

Study findings will address two National Research Priorities: Ageing well and ageing productively; and Strengthening Australia’s social and economic fabric. Results from the study will be used for health services planning and evaluation to improve the care of women with CHF, and will aid the development of tailored and targeted heath interventions.

Exploring unplanned readmission and avoidable admission rates among Aboriginal and non-Aboriginal patients with chronic disease.

L/Professor Rob Sanson-Fisher, University of Newcastle

Whilst hospital readmission rates are high for many people with chronic disease, Aboriginal people are reported to have significantly higher rates of readmission for chronic respiratory disease, diabetes and cardiovascular disease than non-Aboriginal Australians.

Readmissions place a substantial burden on health systems, and individuals through lost time from home responsibilities and employment. This study is therefore focused on investigating the patterns and predictors of unplanned and potentially preventable readmissions.

Using non-Aboriginal people as a comparison, the aims of this project were to investigate the rates of unplanned hospital readmissions over time, examine the differences in rates of unplanned readmissions for selected chronic diseases, establish the distribution of avoidable readmissions and to quantify the extent to which patient, disease and hospital factors contribute to readmission.

The cohort was formed by selected all persons aged 18 years and over with at least one admission for either cardiovascular disease, cerebrovascular disease, diabetes, chronic respiratory disease or renal diseases, in the NSW Admitted Patient Data Collection, and where Aboriginality was coded ‘yes’. The CHeReL linked records from the NSW APDC, the NSW Emergency Department Data Collection, and the NSW RBDM death data. The CHeReL also randomly selected a matched control from the APDC for each Aboriginal case where Aboriginality was recorded as ‘no’ across all admissions.

Findings from this project will provide important information for the future development of Aboriginal health services, and the development of strategies to reduce readmission and avoidable hospitalisations.

PRofiling Immune Suppressed Melanomas (PRISM) Study.

Associate Professor Angela Webster, University of Sydney.

Compared to non-immune suppressed individuals, immunosuppressed people are at increased risk of melanoma. Furthermore, their melanomas are diagnosed at a more advanced stage and survival is markedly poorer. While the immune system is intimately related to melanoma behaviour in the general population, there is extremely limited evidence on the molecular features of melanomas in immunosuppression.

This study seeks to compare the histopathological, immunological and molecular characteristics of melanomas diagnosed in immune supressed and matched non-immune suppressed patients, plus examine the correlation between melanoma phenotype and genotype in immune suppressed compared to non-immune suppressed patients. Tissue samples were obtained from the Melanoma Institute Australia (MIA) biobank, the world’s largest biorepository of fresh frozen and formalin fixed paraffin-embedded primary and metastatic melanomas.

To facilitate this nested case control study, the CHeReL linked data from the MIA biobank to the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA), to identify cases with melanoma who were also immunosuppressed due to dialysis or after kidney transplantation. Non-immune suppressed individuals with melanoma from the MIA formed the control group.

Understanding the relationship between immune function and melanoma behaviour is now critically important as we see compelling Phase I trial evidence that monoclonal antibodies can achieve durable responses among 30-50% of patients with advanced melanoma. These agents regulate adaptive immunity, unblocking specific immune responses to melanoma cells. This study seeks to address fundamental gaps in knowledge about the interaction of the immune system with melanoma. The characterisation of what is distinctive about immune suppression-related melanoma promises to benefit both transplant patients and melanoma care more broadly.

BreastScreen NSW and 45 & up study data linkage.

Dr Anna Cohen, Cancer Institute NSW

BreastScreen NSW (as part of BreastScreen Australia) provides free screening every two years to women aged 40 to 74 years, while specifically targeting women aged 50-69. Studies have shown that with sufficient participation, mammography screening can substantially reduce mortality from breast cancer. As such, BreastScreen Australia has set a target participation rate of 70%.

It is widely recognised that a proportion of eligible women in the target age range are screened outside the BreastScreen program. For example through diagnostic imaging services funded through Medicare, or privately. The extent of out-of-program screening was last estimated in 2005; the purpose of this study, therefore, is to accurately quantify the number of women aged 50-69 years who are having Medicare reimbursed mammography for screening purposes.

The aim of this project is to estimate the ‘true’ BreastScreen participation rate across public and private screening sectors in NSW, and to describe the demographic profiles, screening patterns, interval cancer rate and mortality rates of women screened in BreastScreen and out of program.

Women participating in the 45 and Up Study formed the cohort for this study. The CHeReL linked the 45 and Up records to the BreastScreen NSW data, NSW Central Cancer Registry, NSW Admitted Patient Data Collection and the NSW RBDM death data. Relevant Department of Human Services Medicare Benefits Schedule records, available from the 45 and Up Study, were also obtained for each participant. This data linkage provided BreastScreen NSW with the opportunity to report against demographic information such as socio-demographic, cultural, health status, family health history, and living dependence attributes for the first time.

This study provides the opportunity to understand the level of need for BreastScreen services across NSW and to accurately monitor and report BreastScreen service performance. An understanding of the current service use patterns will enable targeted recruitment initiatives and relevant service provision into the future.

Cognitive decline in the elderly and health service utilisation.

Professor Henry Brodaty, University of NSW

People with dementia are major users of medical and hospital services; experiencing three times higher hospitalisation rates, and lengths of stay almost twice as long as cognitively intact people of similar age. However, in the early stages of dementia there can be a mix of increased and reduced use of medical services that may vary with the circumstances of the individual. Furthermore, variation in usage of services may in turn be associated with progression of mild cognitive impairment (MCI) and dementia.

Using an established cohort of older people enrolled in the Sydney Memory and Aging Study (MAS), this program of research, consisting of three studies, aimed to examine the health service utilisation, costs and health outcomes of people with and without MCI and dementia. Study 1 aimed to investigate the impact of acute hospitalisation events on cognitive and functional trajectory plus ascertain the extent to which factors associated with hospitalisation, illness, or patient co-morbidities influence cognitive decline following hospitalisation; Study 2 aimed to determine the impact of MCI on health care utilisation and costs over time; and Study 3 aimed to determine injury related health care usage and outcomes for people with and without MCI and dementia.

For this program of work, the CHeReL linked records from the MAS to the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, and the NSW RBDM death data and ABS Mortality data.

The results of this project will provide information which could contribute to the development of clinical policy and health service planning to better support older adults with mild cognitive impairment.

Health service use in the older person with complex health needs: 45 and Up Study.

Mr Mark Bartlett, Sax Institute

People with complex health needs typically have multiple chronic conditions, frequent hospitalisations, and limitations on their ability to perform basic daily functions (due to physical, mental and psychosocial challenges). Effective healthcare for older people with complex health needs, their carers and families, requires a diverse range of health care professionals working together and services must be co-ordinated through a shared plan with joint accountability.

 This project sought to inform the implementation and evaluation of the ‘NSW Strategic Framework for Integrated care of the older person with complex health needs’. Baseline information on the current service use environment in terms of how and when older people access services, what type of services they access, and the nature and quality of communication between services was the key focus of this project.

A cohort of people selected from the 45 and Up Study aged 65 years and over formed the base cohort. This data set also includes Department of Human Services data from the Medicare Benefits Schedule (MBS) and the Pharmaceutical Benefits Scheme (PBS). The CHeReL linked these records to the NSW Admitted Patient Data Collection, NSW RBDM death data, and NSW Emergency Department Data Collection. The study cohort comprised of people who were admitted to a NSW hospital with a primary or additional diagnosis indicative of ‘geriatric syndrome’ during the study period. A comparative control group with diagnoses other than geriatric syndrome conditions was also identified, thereby enabling comparisons between the study group and the group without geriatric syndrome.

In addition to supporting the implementation and evaluation of the ‘NSW Strategic Framework for Integrated care of the older person with complex health needs’ findings from the study will inform initiatives to improve service co-ordination, and therefore health and wellbeing, for older people (as well as their carers and their families) with complex care needs.

Health service use among NSW Workers (aged 45 and over) with chronic illness and life risks.

Mr Mark Bartlett, Sax Institute

Chronic diseases and related lifestyle risk factors lead to significant morbidity and associated health service usage and cost. Health service use associated with cardiovascular disease and diabetes in particular is significant.

The workplace is acknowledged as an important setting for health promotion interventions, and as such this project aimed to investigate health service use among NSW workers (aged 45 years and over) who have a newly acquired chronic illness or lifestyle risk, with a view to providing insight into the utility of the NSW workplace as a venue for disease and risk preventive interventions.

With cardiovascular disease (heart disease, stroke, hypertension, blood clots), diabetes, and obesity as the focus, this study aimed to describe the pattern of health service utilisation amongst working adults with a recently diagnosed lifestyle related chronic disease or the onset of obesity. The study also aimed to compare health service utilisation in this group with a comparison group without lifestyle related chronic disease or obesity; and estimate the differential cost of these conditions to the health system.

Working adults aged 45 and over with no pre-existing disease/risks were selected from the 45 and Up Study baseline survey. Risk and incident disease status at follow up identified those with or without a recently developed disease/risk factor. The CHeReL linked these records to the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, and the NSW RBDM death data.

Department of Human Services data from the Medicare Benefits Schedule (MBS) and the Pharmaceutical Benefits Scheme (PBS), available from the 45 and Up Study, were also used in the analyses.

Study outcomes will contribute to knowledge of the health services impact of a newly diagnosed chronic illness or recently acquire lifestyle risk in NSW workers, and will highlight opportunities for implementing disease and risk preventive interventions in NSW workplaces. 

Effects of opioid substitution therapy on health service use of people with opioid use disorders.

Dr Sarah Larney, National Drug and Alcohol Research Centre, University of New South Wales

People with an opioid use disorder (OUD) have complex health needs including higher rates of acute and chronic diseases. Recently, as this population ages, increases in cancer and chronic liver disease are being observed, raising questions about health service utilisation of people with an OUD and the extent to which pharmacotherapy for opioid dependence may impact health services use.

This project is investigating the impact of pharmacotherapy on health services utilisation. In particular it aims to investigate differences in health service use in people with and without opioid disorders and the impact of opioid substitution therapy on health service use and costs in people with an OUD.

The project is designed as a case control study. To establish the base cohort, the CHeReL linked data from the NSW Pharmaceutical Drugs of Addiction System (PHDAS), the NSW Emergency Department Data Collection (EDDC) and the NSW Admitted Patient Data Collection (APDC). The CHeReL also established two comparison control groups, by identifying matched non-OUD controls from the APDC and the EDDC. Two controls per case were identified, matched on case sex, age of case at the index opioid event and year of index opioid event. Identifying details from the cohort were provided to the Australian Institute of Health and Welfare to undertake a linkage to the National Death Index.

This project provides a unique opportunity to measure the burden of opioid use on health services, and through comparison with non OUD peers, identify those diagnoses with excess health service use. In turn this will inform programs for early intervention at the primary care level.

Pathways of Care: a longitudinal study of children and young people in out of home care.

Ms Marilyn Chilvers, NSW Family and Community Services

Children in out-of-home care (OOHC) are at greater risk of negative outcomes than their peers in the general population, and are more likely to come into contact with the juvenile justice system and have poorer educational and health outcomes. The NSW Family and Community Services (FACS) have established a large scale prospective longitudinal study to examine the impact of OOHC on children and young people who entered OOHC on a Children’s Court order for the first time between May 2010 and October 2011. The study is examining family characteristics, child protection history, trajectories through care, and development and wellbeing during and after OOHC by in-depth interviews with children and carers, on-line surveys caseworkers and teachers and FACS administrative data. This project was extended to incorporate record linkage to health, education and criminal justice data.

To facilitate these additional objectives the CHeReL linked the Pathways of Care Longitudinal Study (POCLS) data to the Re-offending dataset (ROD) from the Bureau of Crime Statistics Research (BOCSAR), the Australian Early Development Census (AEDC), NSW National Assessment Program – Literacy and Numeracy scores, and the NSW Department of FACS Case Management System (KiDS). From the CHeReL Master Linkage Key, data from the NSW Admitted Patient Data Collection, NSW RBDM death data, ABS Mortality data, NSW Perinatal Data Collection, NSW Emergency Department Data Collection, and the NSW Mental Health Ambulatory Data Collection were linked to the POCLS data.

Record linkage has enabled development of a large, rich data resource which provides an opportunity to investigate outcomes for these children that would not have otherwise been possible. In particular, the addition of health, justice and educational data provides the opportunity to identify the predictors of outcomes such as mental health issues, injuries, poor academic achievement, criminal activity and re-offending. This project will add valuable information to the evidence base underpinning the justification for placing children in care and inform policy and practice for OOHC programs. 

Single Practice, Multiple Hospital Review of Treated Aortic Aneurysms from 1987-2014.

Dr Raymond Englund, R and R Englund Pty Ltd.

This retrospective practice audit uses linked data to ascertain short and long term outcomes following surgery for Abdominal Aortic Aneurysm repair. The audit spans almost 30 years, during which time the management of abdominal aortic aneurysm disease has changed significantly from open surgery to endovascular aortic aneurysm repairs.

Essentially the key outcome from aortic aneurysm surgery is duration of survival. The CHeReL linked a clinical practice registry to the ABS Mortality Data and NSW Registry of Births Deaths and Marriages death data. This linkage will enable complete follow up of all patients treated during the time period for accurate survival calculations and also facilitate individual quality control for the surgical practice of interest.

Demand for Emergency Service Trends in Years 2010-15 (DESTINY10.15): A population-based study of Emergency Department utilisation and length of stay in New South Wales.

Associate Professor Michael Dinh, Royal Prince Alfred Hospital

With demands for emergency department (ED) care increasing across Australia, managing access and demand, often in the absence of additional resources, remains one of the fundamental challenges of modern emergency medicine. There is some evidence that there is a disproportionate increase in population based rates of ED care for those aged 80 years and over but the reasons underlying presentation are not well understood. Therefore an understanding of the increased demand on ED services at a population level will support better choices in the allocation of health resources and provide a basis on which to develop best practice models of care.

This study sought to understand the drivers of increased demand for ED services in NSW, focusing on the elderly and injury related presentations. Outcomes of interest include ED presentation and re-presentation rates, ED length of stay and admission rates for specific conditions, plus predictors of prolonged ED length of stay and ED re-presentation.

The CHeReL extracted all patient records from the NSW Emergency Department Data Collection for the years 2010-2015 from the Master Linkage Key. Findings from this project will facilitate ED resource planning to meet the future needs of emergency department patients. 

Wealth and health in children and adolescents with chronic kidney disease.

Dr Germaine Wong, University of Sydney

Children with chronic kidney disease (CKD) have a significantly greater health burden in terms of physical, psychosocial, cognitive and emotional wellbeing.  Children with CKD are at risk of dying prematurely and those on dialysis have a significant disruption to their daily routine and quality of life. CKD impacts on child developmental, educational attainment and also results in a significant financial burden on the family. For poorer families, the financial burden compounds the health and development impact of CKD, resulting in worse outcomes for these children.

This project proposed to investigate the impact of CKD on school aged children and adolescents and their families, by estimating the prevalence of economic hardship amongst caregivers; determining the relationships between socioeconomic status and health, education and cognitive outcomes; investigating the impact of wealth on long term health and health related quality of life outcomes; and also describing the caregivers perspective on the financial impact of caring for children with CKD.

Children and adolescents aged 6-18 years with CKD and their carers were first surveyed to collect demographic, socioeconomic, health and education information. The CHeReL linked these records to the National Assessment Program – Literacy and Numeracy data, the Australian and New Zealand Dialysis and Transplant Registry, plus records from the NSW Admitted Patient Collection, NSW Emergency Department Data Collection, NSW Perinatal Data Collection and the ABS Mortality Data and NSW RBDM death data.

Understanding and recognising the needs, of children with CKD is vital to ensure adequate provision of services. Understanding the needs of children with CKD from socially and financially disadvantaged families is particularly important to ensure equitable service and budget planning. It is envisaged that findings from this study will inform the development of strategies to provide much needed support for school aged children with chronic kidney disease.

Long term outcomes of an investigation for post-traumatic stress disorder (PTSD) among illicit drug users.

Dr Katherine Mills, National Drug and Alcohol Research Centre, University of New South Wales

The high prevalence of Post-Traumatic Stress Disorder (PTSD) among people who are dependent on illicit drugs has been clearly recognised in both the Australian and international literature. Despite this, research on treatment responses to this significant problem is sparse. Individuals with this comorbidity present a significant challenge to substance abuse treatment providers as they present with a poorer clinical profile, and have poorer substance abuse treatment outcomes, including higher hospital readmission rates. Consequently, they are a costly burden to the health care system.

A recently completed randomised controlled trial (RCT) of an integrated exposure-based treatment for PTSD showed that participants randomised to receive the treatment demonstrated a greater reduction in PTSD symptom severity compared to those randomised to receive usual care. Secondary analysis indicated that reductions in PTSD were associated with significant reductions in substance use.

This study seeks to extend these findings by examining the longer term impact of this treatment on health service utilisation and mortality - two important measures of outcome. To facilitate this, the CHeReL linked the RCT participant data to the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, the NSW RBDM death registrations, and the ABS death data. Findings from the study will contribute valuable information to knowledge of how best to treat people suffering from co-occurring PTSD and illicit drug use, which in turn could reduce health service use and mortality rates amongst PTSD sufferers.

Diabetes case detection through emergency admissions.

Professor N Wah Cheung, Westmead Hospital

Hyperglycaemia is common amongst patients who are admitted to hospital through the Emergency Department, many of whom were not previously known to have diabetes. There is research to show that hospital patients with recently detected hyperglycaemia have poor follow up, despite the evidence from other studies demonstrating that many people are diagnosed with diabetes on follow up testing. Failure to properly assess people with hyperglycaemia in the Emergency Department is a missed opportunity to diagnose a population at risk and implement treatment which may improve outcomes.

This study aims to determine if routine glucose screening in the Emergency Department combined with an automated HbA1c testing and notification to Diabetes Services for those who are hyperglycaemic, leads to improved detection and follow up of diabetes as a result of the hospital admission. Specifically, the study will establish a system of routine blood glucose measurement in the Emergency Department and investigate if the system leads to improved outcomes.

In total 18 hospitals across NSW are involved in this cluster randomised trial. Data from people attending participating hospitals and having a blood glucose level taken will be recorded and a case list prepared. For efficiency and accuracy additional patient clinical details will be obtained from the NSW Admitted Patient Data Collection (APDC). The CHeReL linked the case list to the NSW APDC, the NSW RBDM death registrations and the ABS mortality file.

This project presents an opportunity to improve outcomes for people at high risk due to undiagnosed diabetes. Results from this study will also inform clinical guideline recommendations from the Endocrine Network of the Agency for Clinical Innovation. 

Detecting missed opportunities for earlier HIV diagnoses in NSW.

Dr Jeffrey Post, University of NSW and Prince of Wales Hospital

Survival is improved in people with HIV if they commence antiretroviral therapy before the CD4 T-cell count falls below 350 cells/uL; however up to 40% of people in NSW are diagnosed late, with a CD4-T cell count below 350. Late diagnosis is more common in people with heterosexual sex or injective drug use as a risk factor for HIV infection than in men who have sex with men. The National HIV Testing Policy now includes clinical indications for recommending an HIV test, and the NSW HIV Strategy identifies the reduction in late diagnosis as a priority area for action.

This study sought to identify opportunities for health care contact where an HIV test may lead to earlier diagnosis, plus investigate the duration between diagnosis of conditions which may indicate HIV, and identify access points for HIV testing to facilitate earlier diagnosis.

Record linkage provides an opportunity to investigate relevant events such as diagnoses, procedures or health care presentations prior to HIV diagnosis to investigate the study aims. Using the National HIV Register, all subjects diagnosed with HIV in NSW in the study period were selected as the cohort. The CHeReL linked these records to the NSW Central Cancer Registry, the NSW Notifiable Conditions Information Management System, the Admitted Patient Data Collection, and the Emergency Department Data Collection.

The ability to diagnose people with HIV earlier in the course of infection will facilitate earlier treatment and better outcomes for individuals. It will ultimately also reduce the cost of care and potentially contribute to minimising onward HIV transmission.

Patterns of hospital health service utilisation for heart failure patients in NSW.

Dr Jane Robertson, University of Newcastle.

Heart failure is associated with considerable morbidity, poor survival, and substantial use of health care resources and costs. Hospital admissions and readmissions are known to be frequent and new diagnoses are increasing. Despite the burden of heart failure on individuals and health services, there have been no comprehensive population based studies of the impact of heart failure on health service utilisation in NSW.

Health record linkage offers the opportunity to investigate longitudinal records of care for a large number of people hospitalised for heart failure; something that would not be possible if reliant on paper based records. Using linked data the study aimed to follow a cohort of people admitted to NSW hospitals with heart failure or hypertensive disease to investigate admission and readmission rates plus the risk factors for hospital readmission; mortality and survival; the impact of co-morbidities on readmission and length of stay; and diagnostic and treatment procedures used. The CHeReL linked records from the NSW Admitted Patient Data Collection, the NSW RBDM death data, and the ABS mortality records to facilitate this project.

In addition to providing a comprehensive picture of health service utilisation for heart failure in NSW, this project will lay the foundation for a series of projects examining the health care needs of people with heart failure. Subsequent projects will validate findings against medical records, extend this data linkage and will attempt to obtain information from Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data to examine resources use for heart failure outside the hospital setting.

Enhanced reporting of Aboriginality in Administrative Health Datasets using record linkage – a feasibility study.

Dr Lee Taylor, NSW Ministry of Health.

Aboriginal people are known to be under-reported on administrative health data collections. A number of initiatives to improve collection of information on whether a person is Aboriginal or not at the point of health service means that reporting of Aboriginal people on administrative health data collections is slowly improving over time. However, improving reporting to an acceptable level will take some years. While Aboriginal people remain under-reported, data linkage has the potential to provide an interim solution to obtaining more accurate statistics on the health and health service use of Aboriginal people. This project examined the feasibility of using record linkage to improve reporting of Aboriginal people in data collections held by the NSW Ministry of Health.

For the study, the CHeReL linked seven datasets: the NSW Admitted Patient Data Collection, the NSW Midwives Data Collection, the NSW Emergency Department Data Collection, the NSW Central Cancer Registry; the NSW RBDM birth registration and death registration data, and the ABS mortality data. We used linked data to test different rules to enhance reporting of Aboriginal people. For example, ‘Ever reported as Aboriginal’ is designated if an individual is reported as Aboriginal in any record on any linked dataset. ‘Frequency of reported as Aboriginal’ counts the number of records where an individual has been reported as Aboriginal, from which we can infer a ‘weight-of-evidence’ as to whether a person is likely to be Aboriginal or not. The study developed an algorithm, known as the Enhanced Reporting of Aboriginality (ERA) algorithm, to assess the weight of evidence as to whether a person would be reported as Aboriginal or Torres Strait Islander for statistical purposes.

Enhancement of reporting of Aboriginal people using linked records creates a statistical construct that results in improved information about Aboriginal people. It does not define a person as being Aboriginal, nor does it replace efforts to improve the overall quality of recording of Aboriginal people at the point of care. The results of the feasibility study showed that using the ERA algorithm substantially improved reporting of Aboriginal people on a range of health administrative data collections.

Biomarkers of adverse pregnancy outcomes.

Associate Professor Christine Roberts, The Kolling Institute

Adverse pregnancy outcomes may arise without warning making them difficult to prevent or treat effectively. The placenta plays a critical role in the maintenance and protection of the developing fetus, and development of a healthy placenta with adequate vasculature – placentation - is pivotal to fetal outcomes. Any imbalance between the factors regulating placentation, leading to inadequate placental development, may therefore result in complications such as fetal growth restriction, preeclampsia and stillbirth.

Serum screening for biomarkers in early pregnancy provides an opportunity to identify at-risk pregnancies before clinical signs are detected. This study sought to investigate if adverse pregnancy outcomes were the result of abnormal placental function. Specifically it aimed to determine the pregnancy outcomes associated with antenatal laboratory results, the accuracy and strength of the association of pregnancy biomarkers for identification of women at risk of adverse outcomes, determine the predictive value of biomarkers and identify if there is an optimum week for measurement, and develop and validate a predictive model incorporating biomarkers and other important risk factors. Data linkage facilitated the measurement of perinatal outcomes against the measured biomarkers, and the CHeReL linked a cohort of women on the NSW Midwives Data Collection to the NSW Perinatal Death Reviews, the NSW Admitted Patient Data Collection, and the Pacific Laboratory Medicine Service.

Findings from this study may help develop a profile of women at risk of adverse perinatal outcomes. This could provide opportunities to improve perinatal outcomes via early intervention, ongoing monitoring, and timely referral to tertiary care.

Validation study of recurrent postpartum haemorrhage and associated factors.

Associate Professor Christine Roberts, The Kolling Institute of Medical Research

Pregnancy conditions and complications may arise in any pregnancy and may recur in a subsequent pregnancy. Postpartum haemorrhage is one of the more common conditions, reported to occur in between 5 and 15% of pregnancies. Knowing longer term risks associated with pregnancy conditions or management is vital for women and clinicians making decisions about childbirth.

Postpartum haemorrhage has been demonstrated to be under−reported in NSW population health data, but with few false positives. Although the occurrence of pregnancy conditions and management has been validated against medical records both in Australia and overseas the accuracy of reporting of recurrent events is unknown. It is plausible that subsequent events may be less subject to under−reporting than first−time events but to date there has been no validation of recurrent outcomes.

The aim of this project was to validate reporting of recurrent postpartum haemorrhage, its risk factors and severity in population health data against medical records. Linked population health data represent an ideal source of data on rare, recurrent outcomes. The CHeReL linked records from the NSW Midwives Data Collection and the NSW Admitted Patient Data Collection and identified a random sample of 300 women who delivered their first and second baby within the reporting period and who had a post-partum haemorrhage during either or both birth admissions. Medical records for these women were then accessed with the aim of determining the accuracy and completeness of recording of postpartum haemorrhage in hospital data.

Study results indicate that a history of postpartum haemorrhage may be a stronger risk factor for subsequent haemorrhage than previously demonstrated. A recorded history of postpartum haemorrhage was associated with an increased likelihood of reporting a subsequent haemorrhage. The contribution of uterine atony as a cause of postpartum haemorrhage was over-estimated using hospital data.

Results of this project should enable interpretation of the accuracy and completeness of reporting of subsequent risk of postpartum haemorrhage for the pregnant population. In addition, insights into the reporting of postpartum haemorrhage recurrent event recording could be generalisable to other recurrent conditions in pregnancy. 

Age, acculturation and mental health among overseas-born residents of NSW.

Professor Louisa Jorm, University of Western Sydney

Many overseas−born community groups are ageing much more rapidly than the Australian−born population, reflecting patterns of migration. Ageing is likely to present special challenges for overseas−born people, particularly those with low levels of English−language proficiency. Information about the mental health of overseas−born residents of NSW is patchy, but suggests that there are important differences among country−of−birth groups, with some having much higher rates of psychological distress than others. However, no population−based information exists about patterns of use of mental health services by overseas−born populations, or the impacts of ageing and acculturation on these patterns.

This project sought to investigate how patterns of service use for mental health problems vary according to country of birth, and if these patterns of service use among overseas−born people vary with age and according to available measures of acculturation. The CHeReL linked records from the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, and the NSW RBDM death data so that all records of mental health−related emergency department presentations and hospital inpatient episodes, or instances of death could be obtained.

Understanding individual patterns of service use for mental health problems, and how these vary with country−of−birth and acculturation, will better enable planning of the most appropriate services for specific overseas−born groups. Understanding patterns of health service use and what influences these patterns is essential for planning services to sustain healthy communities. 

The role of maternal cancer history in the occurrence of stillbirth and birth defects.

Dr Efty Stavrou, Cancer Institute NSW

Survivors of cancer may have concerns regarding infertility, adverse birth outcomes or genetic abnormalities in their offspring.  Preliminary results of a large cohort study demonstrated that expected numbers for birth defects was similar in children born of survivors of childhood cancer and those born of the siblings of childhood cancer survivors. Previous breast cancer may increase the risk of stillbirth or congenital malformations; other studies have shown little or no association with cancer history and congenital malformation in offspring. Similarly, the evidence for an association between maternal smoking and congenital malformations is also conflicting.

This study aims to determine the extent to which maternal cancer history and smoking history influences the occurrence of stillbirth and birth defects in babies. For this study the CHeReL linked data from the NSW Central Cancer Registry (CCR), NSW Midwives Data Collection (NSW MDC) and the NSW Birth Defects Register (NSW BDR). The results of the research study may provide information to advise mothers who are survivors of cancer of any risk associated with birth defect and stillbirth occurrence so that they can make informed decisions about their family planning. It will also help to identify those women at higher risk of congenital malformations so that appropriate screening can be implemented. 

Surgical end-point studies.

Dr Efty Stavrou, Cancer Institute NSW.

This study aims to describe factors associated with surgery for upper gastrointestinal tract cancers. Patient outcomes for these cancers are correlated with the initial stage of cancer at diagnosis and the best correlation with survival is associated with surgical staging. However, the advent of better imaging techniques such as, positron emission tomography, (PET) may be of benefit in staging processes. Unfortunately due to limited screening programs, at diagnosis nearly half of patients with oesophageal cancer have a degree of spread of the disease beyond the locoregional confines of the primary.

 

Surgery is the gold standard treatment for resectable oesophageal cancer. Stage I, II and III cancers are potentially resectable, however patients should be assessed for physiologic ability to undergo resection. Preoperative staging such as oesophageal ultrasound, PET or PET−CT scans may improve prognostic stratification, improve patient selection for surgery and therefore improve overall survival.

The specific aims of the study are to describe the factors associated with best practice procedures occurring versus not occurring for oesophageal, liver, stomach and pancreatic cancer; describe how 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; and describe how geographic location, hospital type and volume and patient impact on the outcomes of interest.

For this study, the CHeReL linked cases from the NSW Central Cancer Registry to the NSW Admitted Patient Data Collection. The results of the research study may provide information to oncologists and surgeons on the benefits of providing recommended surgical procedures for their cancer patients in order to decrease the incidence of morbidity and mortality.

Validation of upper gastrointestinal cancer survival procedural and diagnostic codes in NSW.

Dr Efty Stavrou, Lowy Cancer Research Centre.

Whilst the rate of upper gastrointestinal cancer is relatively stable in NSW, the number of cancers diagnosed has been steadily increasing, in part due to the ageing population. Treatment for these cancers is complex requiring specialised care across treatment modalities, and often involves supportive therapy and allied health.

The overall objective of this project is to evaluate the treatment modalities and the patterns of care received by patients with upper gastrointestinal (upper GI) cancer in NSW. To do this two validation studies were first undertaken with the following aims; to determine the accuracy of the Admitted Patient Data Collection (APDC) in identifying patients undergoing surgical resection for upper GI cancers, and to determine the accuracy of the APDC for identifying patients diagnosed with upper GI cancers in NSW.

Case of upper GI cancer were identified from the APDC for facilities in South Eastern Sydney (SES) AHS and also from the SES Clinical Cancer Registry. The CHeReL linked the APDC records with the SES Clinical Cancer Registry.

Study findings will generate a better understanding of the reliability and completeness of administrative data which will increase the potential for accurate reporting, research and evaluation. This will ultimately feed into improved patient outcomes.

Post discharge outcomes of older patients hospitalised with acute illness.

Dr David Basic, Liverpool Hospital

Older persons discharged from acute hospital care may have a number of adverse outcomes, including death, re-presentation to the Emergency Department and readmission to hospital. Information on such outcomes is needed to determine whether and when discharged patients suffer such adverse outcomes, and whether demographic, medical or functional status at the time of hospitalisation can predict them. The aim of this study is to predict those older patients who are most at risk of adverse outcomes, and who may benefit from early intervention (in hospital and/or following discharge) to prevent or delay adverse outcomes.

The Aged Care Unit (ACU) clinical database contains functional and medical data collected during consultations or as an inpatient under the care of geriatricians at Liverpool hospital. The CHeReL linked records from the ACU clinical database to the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, the NSW RBDM death data and the ABS mortality file.

Study findings will help to determine whether demographic, medical and functional variables measured during the index admissions can predict adverse post-discharge outcomes. This will in turn indicate further research about interventions that could be instituted at the time of admission, or soon after discharge, to reduce these adverse outcomes. This work has the potential to significantly improve the healthcare of older individuals, as well as improving the efficiency and effectiveness of the healthcare system.

The Australian HIV Observational Database Hospitalisation Linkage Project.

Professor Matthew Law, Kirby Institute, University of New South Wales

The Australian HIV Observational Database (AHOD) has been active since 1999, and collects a limited set of core data items from electronic patient management systems across a range of community and hospital settings. Its primary objectives are to monitor patterns of antiretroviral and prophylactic treatment use, HIV and non-HIV related cause of death in people with HIV, and long term health outcomes.

Given the limited number of data items collected in AHOD, there is a lack of available information on co-morbidities and health services utilisation in people with HIV infection. This project sought to redress this gap by linking the AHOD database to the NSW Admitted Patient Data Collection via the CHeReL. Linkage to hospital morbidity collections in other Western Australia was also undertaken.

This project enabled expansion of the possible indicators and health issues which could be investigated in this cohort of people. This included hospitalisation rates and risk of readmission, predictors of hospitalisation and readmission, plus the association between hospitalisation and mortality in this cohort.  With improving survival in HIV-positive people, the study findings will provide important information about the longer term health issues facing people with HIV and the health services burden from HIV.

Long term health outcomes in people with HIV followed since seroconversion. Primary HIV Infection linkage study.

Professor Anthony Kelleher, The Kirby Institute, University of New South Wales

The global public health impact of HIV is significant with more than 30 million people infected worldwide. Whilst there is no cure, the development of combination antiretroviral therapy now means that, in developed countries at least, HIV/AIDS is a chronic treatable condition. However, the increased longevity brings with it increased morbidity for people living with HIV, with evidence of early onset cardio and cerebrovascular diseases, liver and renal disease.

The Primary HIV Combined Database (PCUD) is a large cohort of people from NSW and Melbourne with primary HIV infection who have been followed from as early as 1983. Data collected includes blood samples for viral load and Tcell counts, plus information on treatment and disease progression. This cohort provides a rich source of information with which to examine the natural history of infection and how it has changed over time, examine interactions between disease, ageing and co-morbidities, determine clinical outcomes, and explore trends in mortality over time.

The capacity for linkage to additional administrative data sets provides an opportunity to further enhance the value of the PCUD cohort. Using NSW cases on PCUD as the cohort, the CHeReL linked records from the NSW Admitted Patient Collection, NSW Emergency Department Data Collection, NSW Cancer Registry, NSW Notifiable Conditions Information System plus the ABS Mortality Data and NSW RBDM death data.

As more and more people are living with HIV, an understanding of disease progression and outcomes and the impact of long term therapy will provide valuable evidence to support those both providing and receiving treatment. Importantly results can be used to maintain the public dialogue about the prevention and treatment of HIV.

Morbidity in people with hepatitis B and C in New South Wales.

Ms Heather Gidding, National Centre in HIV Epidemiology and Clinical Research

Hepatitis B and C infections (HBV & HCV) are a significant public health burden in Australia, with up to 160,000 people living with chronic HBV and up to 264,000 living with chronic HCV. A considerable proportion of these people will go on to develop advanced liver disease and then hepatocellular carcinoma (HCC).

A previous study provided valuable information about the relative rates of cancer and mortality from HCV and HBV infection. However for this study the HIV status was unknown and therefore the contribution of excess mortality from HIV was also unknown. In addition the study only considered these two severe outcomes, which are only seen in a small proportion of cases. The current study, therefore, seeks to investigate the burden of morbidity in people in the early stages of infection. Specifically it aims to describe rates of hospitalisation in those diagnosed with HBV and HCV compared to the NSW population, and identify predictors of hospitalisation in the cohort.

To facilitate the study the CHeReL selected a cohort of people diagnosed with HBV and HCV during the study period, and linked these records to the NSW Admitted Patient Data Collection, the NSW RBDM death registrations, the ABS Mortality Data, and the NSW cases from the National HIV data base and National AIDS Registry.

Findings from the study will enhance knowledge about the current and future burden of these diseases in Australia. This will facilitate resource allocation and provide baseline data with which to measure the impact of future treatment and prevention strategies

International study of long term hazards of radiotherapy for breast cancer.

Ms Helen Barraclough, Cancer Institute NSW

This study is an international study undertaken by the University of Oxford. All cancer registries meeting the standards for cancer registries set by the International Association of Cancer Registries were invited to participate, and over 50 agreed to collaborate, including the NSW Central Cancer Registry.

Historically radiotherapy regimens have involved cardiac doses above those known to increase the risk of mortality from cardiac disease. The available information from clinical trials is insufficient to characterise the cardiac risk precisely or monitor the way it has changed over time. Moreover regimens irradiating the heart will do so to a greater extent when treating left sided cancer but the laterality of the tumour has been largely ignored in studies to date.

The study objective is to investigate the long term effect of radiotherapy for breast cancer. The main aims are to compare mortality rates from heart disease in women with left sided compared to right sided breast cancer, and to compare rates of ipsilateral and contralateral lung cancer in women previously diagnosed with breast cancer. The study will also investigate incidence of heart disease, lung disease and contralateral breast cancer in women previously diagnosed with breast cancer, plus derive the likely cardiac and lung radiotherapy doses received during treatment.  The study required linkage of hospital and cancer registry. The CHeReL linked the NSW Central Cancer Registry with the NSW Admitted Patient Data Collection. These two data sets were then provided to Oxford University.

Further information on the cardiac risk that has arisen from past breast cancer radiotherapy regimens will increase knowledge of the risk of heart disease from radiation in general. It will also facilitate treatment planning for patients with cancer of the breast or of other thoracic sites, and it will help to quantify the likely risk arising from radiotherapy regimens that are being considered for use in the future. 

The 45 and Up Study: Exploring met and unmet needs for home and community care in NSW.

Professor Louisa Jorm, University of Western Sydney

Home-based care and support services are central to the efficient functioning of the overall health and aged care systems. Home care can often prevent or delay, and substitute for, admission to acute care hospitals and long term care facilities, at a lower cost of care. The Commonwealth Government’s Way Forward: A New Strategy for Community emphasises the importance of ensuring coordination and continuity of care for clients in the delivery of services. The recommended action areas include addressing overlaps and gaps in services and providing easier access to service delivery.

This project aims to provide detailed information, not previously available, about who uses Home and Community Care (HACC) services in NSW and why. The CHeReL linked questionnaire information from the 45 and Up Study to the HACC Minimum Data Set, NSW RBDM death registrations and NSW Admitted Patient Data Collection to facilitate the study, which aims to explore older people’s capacities to remain in the community, their use of HACC and hospital services, and the factors (personal, environmental and service−related) that influence these.

Information from the project regarding met and unmet needs for care will inform the planning of HACC services, and will identify opportunities for intervention to improve outcomes for HACC clients, and to improve transitions of care between the HACC and hospital systems.  It will also provide information on older people in need who do not make use of HACC services. This will help develop targeted interventions for equity of access to services for those who need them.

Alcohol use in Pregnancy

Dr Lucy Burns, National Drug and Alcohol Research Centre, University of NSW

Alcohol consumption is common among Australian women during pregnancy, with many drinking in excess of the guidelines for alcohol consumption despite being pregnant. There is clear evidence that alcohol is teratogenic, causing increased spontaneous abortion and stillbirth, and reduced intrauterine growth and birthweight. At the extreme, excessive alcohol consumption will lead to the development of Foetal Alcohol Syndrome in offspring. Despite the extensive evidence of harms associated with alcohol use in pregnancy, there is as yet no clear profile of women who drink during pregnancy. Yet this information is crucial to direct appropriate and effective preventive and treatment strategies. This project will develop a comprehensive account of the socio−demographic characteristics of women who consume alcohol in pregnancy and the distribution of alcohol use and harms associated with pregnancy through analysis of linked birth to hospital data. To facilitate this, the CHeReL linked the NSW Midwives Data Collection and NSW Admitted Patient Data Collection.

The benefits arising from the study are twofold. It will lead to the identification of markers of high risk in this population indicating where health service resources could be distributed more effectively and consequently reduce the burden of illness in this group of vulnerable women and infants. Overall it may lead to a reduction in the overall morbidity and mortality associated with alcohol use.

Patterns of hospital use amongst individuals with drug and alcohol related problems.

Dr Lucy Burns, National Drug and Alcohol Research Centre, University of NSW

Alcohol and other drug use is widespread in Australia and population studies have consistently reported that a high proportion of people with alcohol or drug use disorders have a current mental health disorder. Higher levels of alcohol consumption and meeting criteria for alcohol dependence are both associated with a higher probability of having a comorbid mental disorder. In clinical samples the rates of these comorbid disorders are greater again, with 50% to 70% reporting lifetime mental health disorders. There are also acute and chronic physical effects of alcohol use and increasing evidence of cardiac disease and chronic liver disease with illicit drug use.

Individuals with substance use disorders place a high burden on the health care system. Their substance abuse in combination with other physical and mental health issues can be costly physically, emotionally and financially. This study sought to use linked data to investigate the patterns of hospital utilisation amongst a cohort of people with a drug or alcohol related problem followed over time during 2000-2008. In particular it investigated the morbidity associated with alcohol and other drug diagnoses; patterns of concurrent other diagnoses; patterns of drug use and health and hospital outcomes by demographic subgroups; and costs associated with alcohol and drug-related diagnoses. For this study the CHeReL identified the cohort of people via internal linkage of the NSW Admitted Patient Data Collection.

Findings will provide important information about the provision of hospital care for those with drug and alcohol related problems and will inform evidence based policy decisions for service provision.

The long term prevalence of hospitalisation in frail older people. 

Professor Ian Cameron, University of Sydney

Hospitalised frail elderly people are at risk of a range of morbidities including functional decline due to altered mobility levels, and hazards of actual hospitalisation such as falls, delirium, nosocomial infections, adverse drug reactions, and pressure ulcer development.  Therefore understanding the burden of hospitalisation in the frail elderly and identifying the predictors of hospitalisation is pivotal to the health and welfare of elderly people.

Using a cohort of frail older patients of a community nursing service who were participants in a study of long term disability, this study aimed to estimate the prevalence of hospitalisations in the cohort and identify the predictors of hospitalisation. The CHeReL linked this cohort to the NSW Admitted Patient Data Collection, the NSW RBDM death registrations, and the ABS Mortality data. Findings from the study will feed into initiatives to deliver care that is appropriate for and targeted to frail older people at risk of further functional decline and risk of admission to residential aged care facilities.

Concordance with national guidelines for colorectal cancer management and longer term survival in NSW.

Associate Professor Dianne O’Connell, Cancer Council NSW

This study sought to investigate longer term outcomes in a cohort of people with newly diagnosed colorectal cancer enrolled in the NSW Colorectal Cancer Care Survey. Reports on surgical, chemotherapy and radiotherapy management have previously been reported and this current study seeks to investigate longer term survival outcomes. The study aims to investigate survival outcomes in patients treated in different facilities, and by surgeon experience and caseload, by rate of concordance with NHMRC evidence based guidelines. To facilitate survival analyses the CHeReL linked cases from the NSW Colorectal Cancer Care Survey to the NSW RBDM death registrations and the ABS Mortality data.

This project will provide clinical outcome data that will be used to examine the effects of different patterns of care during the initial treatment phase after diagnosis on mortality.  This has the potential to impact on future treatment of colorectal cancer in NSW. Also, the findings will have broader implications regarding the management of cancer according to evidence-based clinical practice guidelines and its impact on patient outcomes.

Risk factors for emergency and non-emergency caesarean births among women in NSW.

Associate Professor Deborah Loxton, University of Newcastle

In Australia rates of caesarean section are increasing and are up to 15% above the recommended goal of 10-15% set by the World Health Organisation. Caesarian section is not without risks for mother and baby; in particular the risk of mortality is two times greater than for vaginal birth for infants in the cephalic position. Previous research has identified many factors associated with caesarean delivery, including previous caesarean delivery, age of mother, private health insurance, low education, comorbid disease such as diabetes or hypertension, and psychological status. In Australia studies have shown unnecessarily high rates amongst higher socioeconomic groups and women presenting to private hospitals. Given this complex picture further investigation into the risk factors for caesarian birth is warranted.

Using data collected in the Young cohort (aged 18-23 at recruitment in 1996) of the Australian Longitudinal Study on Women’s Health (ALSWH) this study aims to investigate the risk factors for caesarean birth across population sub groups.  Specific aims are to identify short and longer term risk factors for emergency and non-emergency caesarean births and to investigate inequalities in access. The ALSWH data provides a rich source of information on the health status and health behaviours of mothers. The CHeReL linked this data set with the NSW Midwives Data Collection which provided detailed information on childbirth-specific health, and details of infant health not available in the ALSWH.  

It is expected that these results will not only identify women who are more likely to have a caesarean birth, but also improve care for this at risk population, enabling service providers to proactively implement prevention and planning. Identification of these risks will support a reduction in caesarean births, which may have an impact on infant mortality and morbidity rates.

Cancer incidence study at Port Waratah Coal Services.

Ms Maya Guest, University of Newcastle

Port Waratah Coal Services operates the world’s largest and most efficient coal handling operations via the port of Newcastle NSW. Employees raised concerns that the number of cancers being diagnosed at the Kooragang terminal was higher than should be expected. A preliminary study confirmed that the rate of cancers was indeed higher; therefore a decision was made to undertake a more formal investigation using epidemiological techniques.

The aim of this study was to determine whether the higher than expected numbers of cancers reported at the Kooragang terminal in the preliminary study reflects a true increase when compared to the control cohorts of two reference populations.

Records from all employees at the Kooragang terminal since its opening comprised the cohort for this study. Two reference populations were also selected for comparisons; one from the Carrington terminal and the second from the NSW population. Exposure classification was based on terminal of employment and occupational classification. The CHeReL linked records from the cohort and the reference population to the NSW Cancer Registry so that the cluster could be investigated.

Whilst the investigation of cancer clusters is difficult and finding a cause is often unrewarding, cluster investigations nevertheless serve a role in allaying worker concerns and identifying uncontrolled exposures. Findings from this investigation will also contribute to the knowledge of workplace exposures to carcinogens.

Long−term impacts of methadone maintenance treatment on offending, hepatitis C and mortality among ex−prisoners.

Dr Kate Dolan, University of NSW

Methadone maintenance treatment (MMT) is an effective treatment for heroin dependence that has a number of benefits for patients, including reduced criminality, incidence of blood borne viral infections and mortality. Previous research demonstrates that when given in prison, MMT has similar benefits. However, significant questions remain in relation to the impact of prison−based MMT on these outcomes.

This project uses data linkage to examine criminality, hepatitis C infections and mortality among a cohort of ex−prisoners with a history of methadone maintenance treatment (MMT). In particular it will explore if heroin−using prisoners released from prison while enrolled in MMT have reduced re−offending and re−incarceration compared to heroin−using prisoners released from prison not in treatment; if heroin−using prisoners released from prison while enrolled in MMT have a reduced risk of post−release death compared to heroin−using prisoners not in treatment; and if the duration of MMT is associated with reduced incidence of hepatitis C infection.

The cohort will be drawn from a previous study of MMT in prison. The CHeReL linked records from the MMT cohort to their records in each of the following databases:  the Offender Integrated Management System from the NSW Department of Corrective Services, the Re-offending Database from NSW Bureau of Crime and Statistics, deaths from the NSW RBDM death registrations and ABS mortality data, the Notifiable Diseases Database, the NSW Admitted Patient Data Collection, and the Pharmaceutical Drugs of Addiction System.

The research will generate evidence as to how best to treat opioid dependence so as to reduce criminality, mortality and hepatitis C infections in opioid dependent individuals, particularly those experiencing periods of incarceration.

Exploring the contributions of individual, area and service level factors to indigenous health outcomes.

Professor Louisa Jorm, University of Western Sydney.

Chronic diseases such as coronary heart disease, stroke, heart failure, diabetes, COPD and asthma are responsible for a disproportionate morbidity burden in Indigenous people and a large impact on the hospital system. The focus of this study is to quantify the contribution of hospital-level effects on inequalities in chronic disease outcomes for indigenous people and explore the factors that contribute to these. Factors investigated will include socioeconomic status, accessibility to services, availability of general practitioner services and hospital characteristics.

Linked data will be used to investigate the contribution that individual, area and service level factors make to the inequalities between indigenous and non-indigenous people in the use of hospital services and outcomes of hospital care. These will be examined by condition and different outcomes. To facilitate the study the CHeReL linked data from the NSW Admitted Patient Data Collection, the NSW RBDM death registrations, and the ABS Mortality Data.

The findings will make an important contribution to knowledge regarding the factors and processes underlying Indigenous disadvantage; they will inform current policy debates regarding the best approaches for addressing this disadvantage; and will benefit the community by targeting effort to improve indigenous health, in particular hospital care of chronic diseases.

Outcomes of children admitted to neonatal intensive care units between 1998 and 2006.

Dr Julie OEI, Royal Hospital for Women Randwick

The treatment of sick newborn infants has changed considerably in recent decades. Maternal antenatal steroids and postnatal exogenous surfactant have, along with other modifications of care, reduced the gestational age of viability and increased the survival rates of extremely premature infants. Consequently, prematurity is now a less frequent cause of death than congenital malformations. The number of premature infants has also increased considerably, predominantly due to increasing maternal age and an increased access to successful artificial reproductive techniques. This has also raised the number of multiple births over the last two decades with questionable long-term outcomes. Neonatal intensive care unit (NICU) outcomes also vary by non-medical factors such as ethnicity and maternal substance dependence. Outcomes for substance exposed survivors of NICU have not been investigated.

The aim of this project therefore is to evaluate the outcomes of infants admitted to NICU in NSW and the ACT.  Investigations will include rates and causes of death in NICU’s pre and post the introduction of surfactant; the impact of factors such as ethnicity and maternal exposure to drugs of dependency on development; outcomes from multiple births; and the cost implications of changes in clinical management over time. The Neonatal Intensive Care Unit Study Group provided the study cohort, which is a collective database of information on infants requiring surgery or ventilation in all the NICU’s in NSW and the ACT. The CHeReL linked these records to the Midwives Data Collection, the NSW Admitted Patient Data Collection (formerly the Inpatients Statistics Collection), the Birth Defects Registry, the NSW RBDM birth and death registrations, and the ABS mortality data.

Results will highlight the need for preventative programs and improved follow up care within specific population groups. Findings will also support the evaluation of cost effectiveness of novel therapies in NICU care.

 A pilot study to assess the sensitivity and specificity of using probabilistic and deterministic linkage procedures with limited patient identifiers as collected for HIV infected individuals.

Dr Kathy Petoumenos, National Centre in HIV Epidemiology and Clinical Research, University of NSW                   

The Australian HIV Observational Database (AHOD) is an observational cohort study of HIV infected individuals under routine clinical care at 27 sexual health clinics, specialist general practices and tertiary referral centres throughout Australia. It represents approximately 15% of known HIV diagnoses in Australia. HIV cases are registered with a name code (first two letters of family name followed by first two letters of given name), date of birth and sex to maximise confidentiality. These identifiers are also used for all HIV related clinical trials and cohort studies.

Data linkage is increasingly being performed to estimate long term health outcomes in large cohort studies or registry based populations. Linkage is commonly performed using probabilistic linkage methodology. To what extent limited or restricted patient identifiers reduce the sensitivity and specificity of data linkage is still not very well understood.

This project aimed to conduct a pilot study to assess sensitivity and specificity of the use of name codes, DOB and sex to linkage of the NSW RBDM death registrations using participants in the Australian HIV Observational Database using both the probabilistic and deterministic record linkage approaches. The CHeReL linked records from the AHOD to the RBDM to enable the study to be undertaken. The key outcome measure was linkage success rate. Sensitivity of the linkage was for the known deaths in AHOD patients recruited from NSW contributing sites. Specificity was assessed for those in AHOD known to be alive at the study end date.

The results from this exercise will be used exclusively to support an NHMRC application for funding for a nationwide linkage study of both HIV positive and negative individuals. If linkage is successful it will also provide reassurance regarding the accuracy of findings for future studies.

Malignant Gastrointestinal Stromal Tumours (GIST): The Incidence, Prevalence and Outcome in NSW.

Dr Chee Khoon Lee, Prince of Wales Hospital 

Gastrointestinal stromal tumour (GIST) is a rare tumour, with a natural history of disease which is poorly understood. Population based studies have determined that surgical resection improves survival, with further improvement since the introduction of Imatinib. Surgical resection may also provide the best palliation in every stage in the natural history of metastatic GIST, with debulking procedures associated with improved survival. However the impact of this disease and its associated treatments has not been fully described in the NSW Population.

This study aims to describe the incidence and prevalence of GIST in the NSW population; validate the clinical and histological prognostic factors important to predicting survival; analyse the changes in disease pattern in the post-imatinib era, and examine the impact of surgical intervention in locally advanced metastatic imitanib-treated patients. The study required linkage of relevant records from the NSW Cancer Registry to the NSW Admitted Patient Data Collection and the Australasian Gastro-intestinal trials group database. This linkage was undertaken by the CHeReL. At a later stage subject to the relevant approvals, data from Medicare Australia will also be included in the linkage.

This study hopes to assess the impact of this disease in the Australian population and assess the impact of imatinib on the epidemiology of patients with metastatic GIST. Although controlled clinical trials demonstrated the efficacy of imatinib, the impact at a population level is yet to be firmly established.

Since a controlled trial to examine the efficacy of palliative surgical intervention on patients with metastatic GIST is unlikely to be completed for some years, the evidence from this investigation could also possibly clarify the role of surgery, possibly identifying the subgroup of patients that would benefit the most from such an intervention and those that do not require surgery.

Incidence and prognosis of metastatic breast cancer in NSW.

Dr Sarah Lord, University of Sydney

The substantially reduced mortality from breast cancer in recent years is largely attributed to a combination of improved treatments and introduction of the national breast cancer screening program ‘BreastScreen Australia’ in 1991. Unfortunately, cancer registries do not routinely collect data on relapse and so little is known about the incidence and prognosis of distant relapse in women with an initial diagnosis of localised or regional disease. This information is valuable to address patient questions about risk following an initial diagnosis of early breast cancer and prognosis following diagnosis of distant relapse; and to clinicians to guide the interpretation of the benefits and harms of treatment for metastatic breast cancer (MBC) reported for women presenting with distant relapse.

This project aims to assemble a population based retrospective cohort of women with localised breast cancer to calculate 5 year distant relapse-free survival and incidence of MBC following a primary diagnosis of early stage breast cancer, plus calculate relative survival following a diagnosis of MBC. For this study, the CHeReL linked breast cancer records from the NSW Central Cancer Registry to the NSW Admitted Patient Data Collection.

This project will provide valuable information about the risk of subsequent MBC and prognosis when given a diagnosis of MBC. By providing evidence about MBC prognosis, the project will also provide valuable evidence to patients and their clinicians to guide choices between aggressive treatment or symptom palliation of MBC. 

Screening rates, high grade abnormalities and cervical cancer among women with a substance use admission in NSW.

Dr Lucy Burns, National Drug and Alcohol Research Centre, University of New South Wales

Although morbidity and mortality associated with cervical cancer is preventable, and incidence and mortality has declined significantly since the introduction of routine Pap test screening, the incidence remains high among disadvantaged groups. Women who are problematic substance abused users in particular are at higher risk of infection. Many are more heavily involved in criminal activity and sex work (in order to procure these substances) that leaves them vulnerable to a higher than expected exposure to Human Papillomavirus (HPV). This, combined with other risk factors that increase the risk of cervical cancer places them in a high risk group. Despite this, to date there has been no examination of the incidence of cervical cancer in this cohort.

This study will examine screening rates, high grade abnormalities, cervical cancer and patterns of care for cervical cancer treatment among women who are problematic substance users and who have a substance use hospital admission. Women who are substance dependent are a largely hidden population often unrepresented in cross−sectional household surveys. Record linkage presents an alternative cost−effective approach to addressing the issue of cervical cancer in this group, and to facilitate this, the CHeReL linked records from the NSW Admitted Patient Data Collection, NSW Central Cancer Registry, and the NSW Pap Test Registry.

Results from this study will provide an estimation of screening rates, high grade abnormalities and cervical cancer in a marginalised group of women. This project will go part way to informing cost−effective and equitable policies for substance dependant women who may be at higher cancer risk, but not receiving equitable access to care. Study findings may have implications for other highly disadvantaged populations with similarly elevated cancer−related morbidity and mortality.

International comparison of hospital outcomes using ICD coding and risk standardisation (ICHOIR).

Dr Martin Gallagher, the George Institute for International Health

The Australian and United States (US) health systems, whilst different, face many challenges in responding to the increasing burden of chronic diseases in elderly patients within the constraints of limited budgets. The US spends a much higher percentage of gross domestic product on health care yet, on a number of measures, has poorer health outcomes. Both countries spend at least 1/3 of their health care monies on hospital care and the effectiveness of that care is increasingly being questioned. Governments of both countries have expressed interest in improving the quality of hospital care and the measurement of patient outcomes from hospitalisation.

This project will allow a comparison of patient outcomes across the two countries using statistical standardisation methods already employed in the US. This will provide novel data in Australia and important insights into variability in patient outcomes in Australian hospitals. The project will also inform the viability of such reporting methods in an Australian context as well as clarify the first steps toward international comparison of hospital performance.

The primary project objective is to derive a risk standardised comparison of mortality 30 days following hospitalisation for Acute Myocardial Infarction (AMI), Heart Failure(HF) and Pneumonia (Pn) between the US and NSW hospitals. The secondary objective is to derive a risk standardised comparison of the proportion of patients admitted with these conditions that require readmission within 30 days of hospitalisation. To facilitate this study the CHeReL linked relevant records from the NSW Admitted Patient Data Collection, the NSW RBDM death registrations, and ABS Mortality data.

Given the differences in structure and funding of health systems in these different jurisdictions, the ability to develop robust comparisons for hospital outcomes may offer valuable insights into those features of the system where changes may offer the greatest benefit to the patients.

Relationship between ‘best practice’ primary care, health status, hospitalisation and death for general practice patients with diabetes.

Associate Professor Elizabeth Comino, University of New South Wales

Diabetes is a significant public health problem and the prevalence is increasing alongside increased prevalence of risk factors such as obesity and physical inactivity. The management of diabetes is an important activity for general practice (GP). Divisions of General Practice have encouraged the implementation of best practice guidelines through extensive education and support, and various health policy initiatives aim to reward practitioners who implement them. In Australia diabetes is regarded as an ambulatory care sensitive condition, namely one which is amenable to service provision in community based and general practice settings, and should not result in emergency department presentation or hospital admission.

Previous work demonstrated an association between implementation of ‘best practice’ diabetes care and improvements in diabetes control and clinical indicators. However the relationship between implementation of ‘best practice’ care and health outcomes such as hospitalisation remains unknown. This project therefore aims to explore the relationships among ‘best practice’ diabetes care and clinical indicators of control of diabetes symptoms in the GP setting and hospitalisation using data linkage.  Specifically the research will describe rates of and reasons for hospitalisation; examine the association between ‘best practice’ GP care and hospitalisation and target outcomes for diabetes (e.g. HbA1c) and hospitalisation; and examine trends in diabetes care over time and possible impact on hospitalisation.

To facilitate the study, the CHeReL linked records from CARDIAB (a GP division based electronic diabetes register widely used to support GP management of diabetes) to the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, and the NSW RBDM death registrations.

This research will assess the impact of recent policy initiatives aimed at implementation of best practice guidelines for the management of chronic disease in the primary care sector in Australia. In addition it will contribute to knowledge about the relationship between primary medical care and health outcomes; test the validity of hospital admissions as indicators of primary care; and enable evaluation of the costs of care, including the costs of implementing best practice care.

People with mental health disorders and cognitive disabilities in the criminal justice system.

Associate Professor Eileen Baldry, University of New South Wales.

The Mental Health Disorders and Cognitive Disabilities (MHDCD) in the Criminal Justice System (CJS) study involves a cohort of 2,731 people drawn from the 2001 NSW Prisoner Health Survey and from the NSW Department of Corrective Services Disability Unit Database. This project represents an innovative approach to researching complex populations by creating a detailed dataset on the life-long Criminal Justice (CJ) involvement for a cohort of offenders. This study uses linked but de-identified extant administrative records from The ARC project, and has partnerships with and/or collaboration from all CJS agencies including; Corrective Services, Police, Juvenile Justice, Courts, Legal Aid and human service agencies, Housing, Ageing Disability and Home Care, Community Services, Justice Health, Health NSW (giving access to Mortality, Pharmacotherapy and Admitted Patient databases).

Linking data across CJS sub-systems with Health and Human Services data reveals a coherent picture of the multiple factors contributing to the complicated pathways of people with MHDCD into and through the CJS. It is also assisting in the development of new interventions to address offending, preventative health, duty of care and human rights needs.

This project has developed a unique and innovative method of collecting, merging, and analysing data relating to complex individuals and populations such as those who experience homelessness. Merging data across the criminal justice sub-systems and with relevant human services was seen as a highly beneficial way to provide a broad, trans-CJS and human service, dynamic understanding of persons with MHDCD’s criminal justice involvement. It sidesteps the problem of using prospective, life-course, or longitudinal tracking approaches, which potentially require up to 30 years or more and risk yielding limited numbers of persons in the groups of interest in any case

Oesophageal and gastric cancer: pre-operative and surgical care in NSW.

Dr Efty Stavrou, Prince of Wales Clinical School

Oesophageal and gastric carcinomas continue to have a poor prognosis and for oesophageal cancers and cancers of the gastro-oesophageal junction, the incidence is increasing. Whilst surgical resection is the optimum treatment, it is only suitable for a highly select group of patients. Clinical staging prior to surgery to assess tumour resectability and patient suitability for treatment are of primary importance as outcomes are dependent on stage at diagnosis. However up to two thirds of patients present with unresectable tumours or cancer which has spread beyond loco-regional confines at diagnosis.

This study has two primary aims: firstly to investigate health service utilisation and outcomes following surgical resection for potentially curable cancer associated with surgical volume, hospital sector (public or private), area health service and hospital remoteness; and secondly to determine if best practice procedures, including diagnostic and staging procedures, are undertaken to identify suitability for resection.  Patient characteristics, remoteness of residence, socioeconomic disadvantage, co-morbidities and cancer characteristics will be taken into account. This study required the CHeReL to link data from the NSW Central Cancer Registry, the NSW Clinical Cancer Registry, NSW Admitted Patient Data Collection, NSW RBDM death registrations and the ABS Mortality data.

Findings from this study will describe current practice in NSW for treating these cancers and will inform initiatives to ensure access to best practice care. Ultimately this will feed into improved quality of care and better patient outcomes for these cancers.

Heart Failure Validation Study. 

Dr Jane Robertson, University of Newcastle

Hospital discharge databases are increasingly being used in health services research; more so with the advent of data linkage. However the reliability of the conclusions from these studies depends upon the accuracy and completeness of the information recorded in these administrative datasets.  Validation studies are critical to understanding the inferences that can reasonably be drawn from administrative data sets.

Heart failure is a complex clinical syndrome rather than a clearly defined disease entity. Diagnosis usually follows a history of cardiovascular disease that may include myocardial infarction or as a complication of diabetes. As an ill-defined clinical entity, there can be ambiguity in its diagnosis and reporting in medical records and hospital separation data. The aim of this series of three validation studies is to determine  the validity and reliability of computerised discharge diagnoses for heart failure and assess the utility of administrative data for estimating health resource use associated with this condition. The studies will also examine the completeness and accuracy of recording of patient comorbidities and procedures in the NSW Admitted Patient Data Collection. All results will be validated against hospital medical records. Files containing the record numbers of people admitted to the selected public hospitals with a primary discharge diagnosis of heart failure or hypertensive disease were sent to the CHeReL for linkage to the NSW Admitted Patient Data Collection. Results from the study will improve the accuracy and reporting of heart failure and potentially improve care for patients with heart failure. Results may also be generalisable to other common chronic diseases.

Hospital mortality in NSW.

Professor Louisa Jorm, University of Western Sydney.

This project, jointly funded by the Australian Commission on Quality and Safety in Health Care, the NSW Bureau of Health Information, and the NSW Clinical Excellence Commission, sought to develop performance metrics for hospitals regarding unexpected death during and within 30 days after admission to hospital, and to target interventions to minimise these events. Using measures such as the hospital standardised mortality ratio (HSMR), 30-day mortality (mortality within 30 days of discharge), and standardised mortality ratios, the project highlighted the extent and nature of post discharge mortality and its variability, in order to inform implementation of routine measures of this type in NSW. Specifically it sought to estimate the prevalence of in-hospital versus 30 day mortality; investigate the proportion of deaths that may be unrelated to hospital admission; determine if there is clustering of in-hospital and 30-day mortality in specific clinical areas, hospitals or area health services; determine emergency department use between discharge and 30-day mortality, and investigate if diagnostic data from the previous year changes the relativities between hospitals in these measures.

The study required linkage, undertaken by the CHeReL, of the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, the NSW RBDM deaths, ABS mortality data, and NSW Ambulance data.

Ultimately results from the study will inform the development and implementation of measures of hospital performance, and of systems to respond to these measures, which in turn will drive improvements in the safety and quality of care.

Sedative drug overdose as a predictor of adverse road traffic events.

Professor Alison Jones, University of Newcastle.

Overdose with sedative medications is a common clinical problem. Current clinical practice is to discharge these patients, usually on the post-take ward round, based on crude clinical observations. There is evidence that the patients with a sedative drug overdose discharged from hospital have impaired cognitive and psychomotor skills which may last a few days and may affect their daily functions such as driving, even after being discharged from the hospital. This places them at a higher risk of road traffic accidents and traffic infringements, but this hypothesis has never been examined systematically.

This study proposes to examine whether cognitive impairment arising from overdose with psychotropic drugs with a sedative effect is actually associated with increased incidence of traffic infringements and motor vehicle accidents, compared to non-overdosed patients. To do this, the CHeReL linked the NSW Admitted Patient Data Collection to the Hunter Area Toxicology Services database, the NSW Roads and Traffic Authority traffic accident database, and the NSW State Debt Recovery Office traffic infringement database.

Results will provide valuable evidence to develop standard advice to patients discharged from hospitals after an overdose. Findings will also be important in planning codes of practices for driving. In the long term these will contribute to road safety and to the prevention of road traffic accidents.

NSW perinatal mortality data enhancement 2000-2008.

Dr Lisa Hilder, University of NSW

Perinatal mortality remains a key outcome of maternity care and is used in a variety of indicators, and perinatal death is a data element included in the National Perinatal Data Collection (NPDC). However there is limited information available other than a categorical yes/no about stillbirth and neonatal deaths on the NSW Midwives Data Collection (MDC). Cause of death is not currently included with MDC data in NSW, nor is it supplied by NSW for national reporting, despite broad recognition that cause-specific perinatal mortality is more informative. In particular reporting perinatal deaths due to congenital anomaly separately from other perinatal deaths is increasingly recognised as advantageous as these conditions have a very different spectrum or risk and strategies for prevention. 

Consequently there is limited outcome data available in the absence of linkage with service and process data. Therefore this study aims to use data linkage to enhance information about perinatal deaths among births in NSW. The study will validate mortality data included in the NSW MDC, assess the value of additional information from the NSW Perinatal Death Reviews, and make additional cause of death information available to the NPDC. To facilitate the study, the CHeReL linked data for babies born in NSW from the MDC to the stillbirth and neonatal death records from the NSW RBDM death registrations, ABS Cause of Death data, and the NSW Perinatal Reviews data.

The health of women and children is central to the health and wellbeing of wider families and communities. Results of this study will provide more detailed information about perinatal deaths in New South Wales, and Australia, the factors and characteristics relating to perinatal deaths, and will enable the reporting of cause specific perinatal mortality.

Longitudinal Child Health Study: Stage 1 Pilot Study.

Professor Vaughan Carr, University of Newcastle

The Longitudinal Child Health Study (LCHS) is a project which aims to develop a regional multidisciplinary database containing information on the factors associated with child development, and health and wellbeing in later life. The purpose of this current study is to implement the first stage pilot of the LCHS as a guide to feasibility of the main longitudinal study, which is dependent on the efficiency of a large scale population-based screening measure. This screening measure is required to identify a cohort of children who represent the normal population in their distribution of developmental functioning and which will, in turn, enable the selection of low, medium and high risk subgroups for the longitudinal study.

The pilot study aims to evaluate selected instruments as potential population based screening measures of developmental functioning; determine the age of recruitment into the longitudinal study; and explore characteristics of developmental functioning demonstrated by the screening measure. In particular the association and trends between atypical functioning in the different areas of development, and the relationship between atypical functioning and obstetric factors known to be related to psychological dysfunction in later life, will be explored.

The CHeReL linked data to develop two data sets; firstly data from the National Assessment Program Literacy and Numeracy (NAPLAN) program and the Midwives Data Collection (MDC) for Grade 3 students;  and secondly the Kindergarten Best Start Assessment, the  Australian Early Development Index and the MDC for kindergarten students.

Findings from the pilot study will determine if the main study is feasible. If successful the main study, in the long-term, will enable researchers to address important questions that relate to factors that enrich developmental potential and facilitate transition into young adulthood. It will also allow the identification of factors which build resilience and protect children at risk in the context of a variety of health and wellbeing outcomes.

Cervical cancer screening in women born in Asia and the Middle East.

Dr Karen Canfell, Cancer Council NSW

Globally cervical cancer is the second most frequent cancer in women, with most cases occurring in developing countries. The cervical cancer rate in developed countries is generally much lower, largely due to access to organised cytology screening programs. In Australia the National Cervical Screening Program commenced in 1991 but despite this, there is evidence of lower screening participation in migrant and indigenous women, and women in regional areas or from a lower socio-economic background.

Until the current time, problems of sample size and of verification of country of birth in all women have precluded a detailed analysis and complete characterisation of screening behaviours. Data linkage provides the opportunity to fully characterise screening behaviour across a range of ethnic groups. This study aims to describe screening behaviours in women born in Asian countries, and those born in Middle Eastern countries, and to compare this to the screening behaviour of Australian-born women. The study will determine demographic characteristics and screening behaviours over 3 and 5 years by country of birth, and develop a mathematical model for prediction of lifetime cervical cancer risks in migrant women in NSW.

The NSW Pap Test Registry (PTR) provides information on dates and results of cervical cytology and histology, but it does not contain country of birth data. Therefore the CHeReL linked the PTR with the NSW Admitted Patient Data Collection and the Midwives Data Collection, both of which contain country of birth, to facilitate this study.

This information will eventually be used for prediction of lifetime cervical cancer risks in migrant women in NSW. Findings could also be used to formulate specific recommendations for interventions to promote screening amongst migrant women.

An injury profile for rear seat vehicle occupants using linked health and crash data.

Dr Julie Brown, Prince of Wales Medical Research Institute.

With road trauma the leading cause of mortality and morbidity in 1-44 year olds, and with road traffic crashes costing $17 billion annually, reducing road trauma is a key national and state government priority.  The protection provided to front seat occupants in modern vehicles has improved over the last few decades; however there is no evidence that this is the case for rear seat occupants. In fact, emerging international evidence suggests that rear seat safety is not improving as much as the front seat. To address this, and allow for the development of improved rear seat safety, there is a need for a greater understanding of the injury characteristics of rear seat occupants. This includes understanding factors influencing variations in injury outcome.

This study therefore seeks to characterise the injury profile for rear seat occupants in road traffic accidents. Using data from the NSW Roads and Traffic Authority's (RTA) Traffic Accident Data System (TADS) the study uses vehicle, accident and crash details, occupant seating position and restraint details in combination with hospital admissions, injury incidence, severity, type and location to describe the factors influencing variation in outcomes. For this study, the CHeReL linked records from the RTA Traffic Accident Data System to the NSW Admitted Patients Data Collection.

Results from this work will identify and define the current injury profile for rear seat occupants injured in crashes in NSW compared to the profile for drivers and front seat occupants. This will, for the first time, quantify and describe the injury problem for these road users. This work will also demonstrate which occupants (i.e. what age groups) are the highest priority targets for vehicle based design injury countermeasures and what injury types are of the highest priority for amelioration. Together, this work will provide an evidence base for developing countermeasures such as rear seat safety standards and assessment protocols.

Increase completeness of Aboriginal status in NDD by data linkage.

Paula Spokes, NSW Department of Health

One of the goals of public health services is to reduce rates of infectious disease in the NSW Aboriginal population to at least equal to that of the non-Aboriginal population. In order to achieve this goal appropriate preventative, early intervention and treatment services for infectious diseases need to be available, targeted and accessible. However due to incomplete collection of ‘Aboriginal Status’ within the NSW Notifiable Diseases Database (NDD), estimates of incidence and prevalence of many notifiable infectious diseases within Aboriginal people in NSW are not robust and extrapolations are frequently made from other Australian states and territories which are not always valid.

Data linkage has the potential to improve the completion of Aboriginal status in routinely collected infectious diseases data. The aim of this project is therefore to improve availability and validity of epidemiological data on notifiable diseases in Aboriginal people in NSW so that incidence and prevalence can be more accurately estimated; and the need for and accuracy of interventions can be accurately estimated. To faciliate this, the CHeReL linked records from the NSW NDD to the NSW Admitted Patient Data Collection, the NSW Midwives Data Collection, and the NSW RBDM births and deaths registrations, to prepare a snapshot dataset with improved completeness of Aboriginal status.

Development of this data set, combined with study findings will aid in quantifying the extent of the burden of infectious disease in Aboriginal populations. It will identify sub−populations at risk of infectious disease and facilitate the monitoring of trends over time, thus enabling service planning and impact evaluation.

Investigating best practice primary health care for older Australians with diabetes using record linkage.

Associate Professor Elizabeth Comino, University of New South Wales

In Australia most people access health care through community based primary care settings such as general practice, community health services, pharmacy, and allied health. In these settings care is fragmented due to the range of health professionals involved, mix of private and public funding and practice, number of stakeholders with funding responsibility, and mix of fee-for-service and salaried staff. Because there is no comprehensive source of data on service use in this setting, primary health care is underrepresented in health statistics, and there has been limited exploration of processes of care for people with chronic health care needs.

Data linkage presents an opportunity to explore the processes of primary health care across settings using record linkage. This study aims to describe the process of primary health care provision for older people with diabetes; identify the predictors of primary health care provision; and explore the relationship between primary health care and health outcomes including quality of life and hospitalisation. The CHeReL linked records from the 45 and Up Study, including Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data, to the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, and the NSW RBDM death registrations. A sub study nested within the 45 and Up Study will also be undertaken to validate self-reported diabetes.

Findings will enable examination of the reach of incentives to improve primary health care provision to patients with diabetes and the impact of improved care on outcomes such as hospitalisation. It will provide important insight into the relationship between clinical care in community based settings and outcomes such as hospitalisation. It will also inform strategies to integrate primary health care across state and national jurisdictions and support more effective access to multidisciplinary care for people with chronic conditions.

Patterns of care study for treatment of cervical cancer in Australia and construction of a detailed model of invasive cervical cancer.

Dr Karen Canfell, Cancer Council NSW.

This project aims to describe patterns of care and costs of treatment for invasive cervical cancer in Australia, and to use the information to develop a comprehensive model of treatment, survival, and mortality from invasive cervical cancer. The project consists of two parts; a data linkage study, for which the CHeReL linked data from the NSW Central Cancer Registry to the NSW Admitted Patient Data Collection; and a hospital audit of patients treated for cervical cancer in a large volume hospital for cervical cancer.

Findings from this study will be used to develop a computer simulation model of invasive cervical cancer which will help to assess possible strategies for cervical screening after the introduction of human papillomavirus (HPV) vaccination against cervical cancer in various settings. The study will provide data to explicitly simulate treatment pathways in the Australian context. This will enable accurate calculation of invasive cancer treatment costs in cost-effectiveness assessments of screening alternatives. In addition, it will enable prediction of the long-term impact of HPV vaccination on the distribution of patients across treatment pathways and the long term impact of vaccination on cervical cancer treatment costs.

Patterns of care in radiation oncology 2004-2005.

Professor Geoff Delaney, Liverpool Hospital

The publication of evidence−based treatment guidelines for cancer treatment has enabled the calculation of the proportion of patients that should receive recommended treatment. In a previous project optimal radiotherapy utilisation rates, when radiotherapy is the treatment of choice, were estimated by using treatment guidelines to construct decision trees for all major tumour sites.  Using epidemiological data to calculate the proportions of patients with each cancer that should receive radiotherapy based on these decision trees it was estimated that up to 52% of all cancer patients should receive at least one course of radiotherapy during their illness. In NSW, however, the radiotherapy utilisation rate for cancer patients is only 37%.

This study will investigate the shortfall in radiotherapy uptake amongst cancer patients residing in NSW. To facilitate this study the CHeReL established a state-wide database that linked electronic records from each Radiation Oncology department in NSW to the NSW Cancer Registry. This provided data on demographic factors, cancer type, degree of spread, radiotherapy use or non-use and survival. The database will be used to monitor patterns of radiotherapy care in greater detail for factors such as dose, treatment duration, and time from diagnosis to treatment. Demographic information will provide insight into the factors associated with the use or non-use of radiotherapy. Analysis of the database will also allow examination of palliative radiotherapy, particularly the re−treatment rates for patients requiring more than one radiotherapy treatment course, the durations of palliative treatment and periods between palliative treatments – data that has not previously been available.

A better understanding of the areas of greatest shortfall will enable 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 the model of optimal radiotherapy utilisation, particularly where discrepancies between the “ideal model of care” differs substantially from current practice.

Notifiable communicable diseases and reproductive health.

Associate Professor Bette Liu, University of New South Wales.

Notifiable communicable diseases are common among women of reproductive age.  This study aims to use data linkage capacity in NSW to examine how notifiable communicable diseases affect reproductive health outcomes for women and their children; in particular commonly reported infections in women of childbearing age, such as genital chlamydia, gonorrhoea, viral hepatitis and also emerging infections such as H1N1 influenza.

The specific objectives of the study are to estimate rates of common notifiable conditions in women of childbearing age; quantify the effects of commonly notified urogenital infections, chlamydia and gonorrhoea on adverse obstetric, neonatal and childhood health outcomes; investigate the association between influenza infection in pregnancy and adverse obstetric and neonatal outcomes; investigate the impact of other common notifiable infections on adverse obstetric, neonatal and childhood health outcomes; and quantify the burden of disease from common notifiable infections. The study will include investigation into the impact of infectious diseases into women’s risk of poor reproductive health outcomes including the need for treatment for infertility, ectopic pregnancy, miscarriage, pre-term birth and post-partum infection; and also health outcomes for the child including birth weight, risk of congenital anomalies and the incidence of childhood infections and hospitalisation. 

For this study, the CHeReL linked records from the Notifiable Diseases Database (and HIV notifications), the NSW Midwives Data Collection, the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, the RBDM death registration data, the ABS mortality data and the NSW Register of Congenital Conditions. Findings from the study will provide more reliable estimates of the effect of common and emerging infectious diseases on maternal and child health. This will facilitate the provision of evidence based advice to patients on the risk associated with infections during pregnancy, and will inform health services planning and development of preventive health interventions.

The PRISM Project (Program of Research Informing Stroke Management in NSW).

Dr Melina Gattellari, University of New South Wales.

Stroke is responsible for a substantial burden of mortality and morbidity in Australia, being the third most common cause of death and the most common cause of disability. It is also costly in terms of health expenditure, with costs for acute and ongoing care exceeding one billion annually. Recent innovations in the management of stroke include the introduction of multidisciplinary acute stroke units; thrombolysis medication to minimise disability; and advances in secondary prevention. However the evidence base informing the management of haemorrhagic stroke and Transient Ischaemic Attacks is still relatively weak.

This program of research seeks to explore the management of stroke in NSW and address emerging issues in stroke. The project will explore patient outcomes of mortality, patterns of care, discharge destination and rates of readmission to hospital according to patient and health service characteristics, including the implementation of new services and technology.  It will also explore outcomes of patients who undergo carotid revascularisation for carotid stenosis during the peri-operative phase and track the emergence of carotid stenting over time, plus investigate the uptake of medication to reduce the risk of secondary stroke.  To facilitate the project, the CHeReL linked records from the Master Linkage Key from the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW RBDM death registrations, and ABS Mortality Data.

Despite the recent advances in the management of stroke, and the substantial uptake of new therapies, in NSW there has been limited investigation into the impact of these initiatives on stroke outcomes. Findings from this study will provide insights into current management of stroke, and inform initiatives aimed at improving management and addressing the gaps in uptake of evidence based guidelines, models of care and treatment.

Cancer treatment and survival in NSW.

Ms Elizabeth Tracey, Cancer Institute NSW.

The aim of this study is to develop and implement methods for routine population-based monitoring of the patterns and outcomes of hospital inpatient treatment for cancer in NSW using routinely collected and linked health data. A series of projects will identify the pattern of factors following cancer diagnosis which influence survival from cancer, including cancer volume through a facility, distance from treating facility, frequency of complications and comorbidity, treatment sequence and extent of disease. For this study the CHeReL linked all cases from the NSW Central Cancer Registry to the NSW Admitted Patient Data Collection. Findings from the study will identify prognostic factors for better survival, and will inform the development of initiatives to improve cancer outcomes.

An individual-level study of suicide method substitution over time.

Dr Matt Spittal, University of Melbourne

This multi-state study investigated patterns in the methods used in suicidal acts with the aim of understanding the potential for restriction of access to the means of suicide. In particular the study sought to investigate the extent to which individuals switched methods of suicide acts over time, and the characteristics predicting choice of method on each occasion. There is some evidence that restriction of access to firearms, pesticides, and domestic gas, and regulation of access to barbiturates and other drugs does reduce rates of suicide without  method substitution; however to understand this fully the dynamics behind method substitution need to be better understood.

For this study the cohort was defined by selecting all records from the NSW Admitted Patient Collection or ABS Mortality Data with and an ICD code indicating intentional self-harm. The CheReL linked records from the cohort to records from the NSW Emergency Department Data Collection, and the NSW RBDM death data.

Attempted suicide is a major public problem; it occurs much more frequently than completed suicide and often leads to substantial physical injury and high emotional and economic costs. Thus, an understanding of method substitution effects among suicide attempters (who, as a group, are at very high risk of completed suicide) has potential to yield valuable information for suicide prevention initiatives.

Risk management and funding structures: an econometric panel data analysis of health insurance in Australia.

Associate Professor Elizabeth Savage, University of Technology

Australia has complex and fragmented funding of its universal health insurance system. Health expenditures are split between patient co-payments and Commonwealth or State Government subsidies. Government subsidies via the public insurance system comprised 69% of total recurrent expenditure, with patients’ co-payments comprising about 19% and private health insurance about 8% of the total. 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.

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. Specifically the project aims to provide a detailed analysis of the equity and efficiency of current subsidies; estimate models of total individual health expenditure risk; estimate a system of separate risk equations for medical, pharmaceutical and hospital exposures, and simulate the impacts on resource allocation of alternative subsidies.

For this study, the CHeReL linked records from the 45 and Up Study, which includes records from the Medicare Benefits Schedule and Pharmaceutical Benefits Scheme, to the NSW Admitted Patient Data Collection. The significance of this project lies in its contribution to new knowledge focused on the equity and efficiency of existing subsidies and the use of data to model health expenditure risk. It will address misallocation problems in the funding system, allow the integration of the existing fragmented system of financing health care and enable the design of a system of subsidies aligned with need.

Validation of Aboriginal identification in the APDC and NSW Mortality Data using the 45 and Up Study.

Professor Louisa Jorm, University of NSW

Indigenous status is known to be under-reported in hospital and deaths data. Using under-enumerated data can result in inaccurate estimates of disease. Data linkage can be used to increase identification by assigning Indigenous status to a person based on all of their admissions, even if not all are identified as such. However, without a direct validation using an external source of Indigenous status, it is difficult to determine what algorithm is the best to use for health research purposes. The Indigenous status variable in the 45 and Up Study is self-reported through a self-completed paper-based questionnaire. Although this is not a definitive register of Indigenous status, it is a more accurate source than administrative data sets. By examining those people who have linked records in hospital, deaths and 45 and Up Study data, we can examine which of the algorithms result in the best discrimination, increasing identification without including too many false positives.

Therefore the aims of this study are: To investigate factors that predict ‘correct’ Aboriginal identification in hospital and mortality data; to develop a set of algorithms to improve Aboriginal identification and investigate their validity; and to investigate how Aboriginal rates and rate ratios for hospital separations, outcomes and mortality vary according to the algorithm used. For this study, the CHeReL linked records from the 45 and Up Study to the NSW Admitted Patient Data Collection, the NSW RBDM death registrations, and the ABS Mortality data.

The project will produce findings and new techniques that will lay the groundwork for Indigenous health studies Australia-wide. The findings will make an important contribution to knowledge regarding the possible biases that occur when using different algorithms for identifying Indigenous people in administrative datasets. This will lead to more accurate reporting of health issues for Indigenous Australians, thereby supporting the development of appropriate health initiatives.

An analysis of the long term costs of disability arising from the Vietnam War.

Dr Philip Clarke, Applied Economics

The long term health and support costs of war related disability are substantial. This study aimed to explore the impact of overseas deployment on health and disability in Veterans from the Vietnam War.

The project has two main objectives; firstly to gain an understanding of the factors which influence the rate and progression of veterans on return from operations applying for war-related disability pensions; and secondly to estimate the lifetime health and pension costs of Vietnam veterans by level of disability.

The study used a cohort of Vietnam Veterans obtained from administrative data held by the Department of Veterans Affairs, and service information from the Nominal Roll for the Vietnam War. Personal identifiers from these data were sent to the CHeReL so that the two data sets could be linked. The   linkage pins were then sent back to the researchers to link information from the two sources. A cohort of veterans engaged in ‘peacetime’ service only was developed to provide a comparison group.

Study findings will provide estimates of the incremental costs associated with active service overseas ie costs over and above Veterans with only peacetime service. This will inform an understanding of the long term resource implications of current and future deployments.

Validation of upper gastrointestinal cancer survival procedural and diagnostic codes in NSW.

Dr Efty Stavrou, Lowy Cancer Research Centre.

Whilst the rate of upper gastrointestinal cancer is relatively stable in NSW, the number of cancers diagnosed has been steadily increasing, in part due to the ageing population. Treatment for these cancers is complex requiring specialised care across treatment modalities, and often involves supportive therapy and allied health.

The overall objective of this project is to evaluate the treatment modalities and the patterns of care received by patients with upper gastrointestinal (upper GI) cancer in NSW. To do this two validation studies were first undertaken with the following aims; to determine the accuracy of the Admitted Patient Data Collection (APDC) in identifying patients undergoing surgical resection for upper GI cancers, and to determine the accuracy of the APDC for identifying patients diagnosed with upper GI cancers in NSW.

Case of upper GI cancer were identified from the APDC for facilities in South Eastern Sydney (SES) AHS and also from the SES Clinical Cancer Registry. The CHeReL linked the APDC records with the SES Clinical Cancer Registry.

Study findings will generate a better understanding of the reliability and completeness of administrative data which will increase the potential for accurate reporting, research and evaluation. This will ultimately feed into improved patient outcomes.

Trends of spine surgery and arthroscopy in Australia.

Professor Ian Harris, Liverpool Hospital

Studies overseas have shown that knee arthroscopy rates are generally rising, and are performed more frequently in older people (>45 years of age) and in people with higher incomes compared to lower. In the US much of the increase is due to osteoarthritis, which also increases substantially with age. In Australia the prevalence of osteoarthritis is increasing, which indicates that the number of knee arthroscopies may also be increasing. The relationship of income with knee arthroscopy means that rates of increase are likely to be higher in the private sector. In the wake of the recent high level evidence of the inefficacy of knee arthroscopy for the treatment of osteoarthritis, it is unknown if there has been a decline in the utilisation of this procedure.

Similarly, despite the lack of evidence for efficacy or indicative use, the growth of the use of lumbar spinal fusion and revision surgery in Australia is thought to mirror the increasing usage trends in the US; with considerable practice variation between insurance classes and geographically.

There have been no studies exploring rates of use of these procedures in Australia. Therefore this study sought to explore the patterns of use of Arthroscopy (knee, hip, wrist, shoulder, ankle, elbow), revision rates of knee arthroscopy and the relationship between knee arthroscopy and total knee replacement. It will also explore trends in spinal surgery procedures including surgical revision. For this study, the CHeReL linked data from the NSW Admitted Patient Data Collection and the NSW RBDM death registrations.

The study will provide an insight into rates of use of this procedure in Australia. It will be a major step towards rationalising the use of arthroscopy and spine surgery in Australia and reduction in orthopaedic procedures performed for which there is limited evidence of efficacy. This will help reduce cost to the healthcare system and the public. 

Augmenting Date and Cause of death information in the AHS Clinical Cancer Registries.

Professor Geoff Delaney, Liverpool Hospital

The Area Health Service (AHS’s) Clinical Cancer Registries collect data to inform the management and planning of cancer services, and the data are used by AHS’s to monitor variation in patient outcomes and identify best practice outcomes. Cancer survival is a key outcome for cancer patients and the Clinical Cancer Registries monitor variation in survival by tumour group, treatment, attendance at multi-disciplinary team meetings, and other key factors. However mortality data are not easy to obtain unless the patient has died in hospital.

This project therefore sought to add data and cause of death to the Clinical Cancer Registries for those whose death information was not readily available from usual sources. To do this the CHeReL linked the Clinical Cancer Registries from six AHS’s to the NSW Central Cancer Registry. This linkage enabled 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.

NSW Cancer Registry reporting project using de-identified linked data.

Professor David Currow, Cancer Institute NSW.

This project seeks to develop a program of reporting for the NSW Cancer Registry Program, under the NSW Cancer Plan 2011-2016. The reporting program aims to improve patient care, by enabling facility, state-wide and Area Health Service based reporting to monitor and evaluate patterns of care and cancer outcomes for cancer patients treated in NSW.

The establishment of a de-identified linked data set will facilitate patterns of care studies; evaluation of best practice against treatment guidelines; development of a suite of indicators to support cancer services management; development of reports for quality assurance health services planning and program evaluation; and identify clinical variations in cancer treatment across NSW. For this study the CHeReL linked records from the NSW Central Cancer Registry, the NSW Clinical Cancer Registries, and the NSW Admitted Patient Data Collection.

This program of work will establish the foundation of reporting from the NSW Cancer Registry Program. By linking the Clinical Cancer registries with the NSW Central Cancer Registry and the Admitted Patient Data Collection, it will be possible to describe a more complete picture of treatment and service delivery in NSW hospitals. This will contribute to improved patient outcomes by enabling, facility, state-wide and Area Health Service based reporting to monitor patterns of care and outcomes for cancer patients treated in NSW. This in turn will result in more efficient and appropriate allocation of limited health resources and will contribute to building evidence based health policy and service delivery.

Comparison of breast cancer screening and survival by Aboriginal and Torres Strait Islander status in Australian women.

Dr Helen Zorbas, National Breast and Ovarian Cancer Centre

There is clear evidence of disadvantage among Aboriginal and Torres Strait Islander peoples compared with other Australians across a broad range of health indicators, including breast cancer. While Indigenous women experience a much lower incidence of breast cancer, their breast cancer mortality rates are at least as high as for non-Indigenous women and probably higher, reflecting the poor survival outcomes of Aboriginal women with breast cancer.

This project aims to determine differences in participation in BreastScreen screening and re-screening, screening experiences and survivals from breast cancer by Indigenous status.  It will evaluate screening and breast cancer survival across Australia by socioeconomic status and remoteness of residence, to determine the disadvantage which is greater than attributable to socio-demographic factors. 

This study involves linking data from all States and Territory cancer registries and BreastScreen programs. The CHeReL linked records from BreastScreen NSW to the NSW Cancer Registry and provided these to the Australian Institute of Health and Welfare in de-identified format for analysis and reporting.

Documenting differences in breast screening and cancer outcomes will provide benchmarks for government, health and other organisations to assess the effects of targeted programs to reduce inequalities and for tracking future trends. This research will also assist government, health and other organisations to better direct future activities in the area, such as informing health policy, health promotion and health service planning for Aboriginal and Torres Strait Islander women. Indigenous groups will be able to use the data for public health assessment; and where numbers permit, to locate inequalities by type of geographic area. It is envisaged that improving the quality of data in this area will lead to better informed planning and delivery of services and programs to improve breast cancer outcomes for Aboriginal and Torres Strait Islander women living in Australian communities.

The maternal health predictors of adverse birth outcomes.

Associate Professor Deborah Loxton

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. Outcomes such as stillbirth and neonatal death have a negative impact on the family for many years. While numerous biologically based studies have investigated these outcomes, and many risk factors have been identified, 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, indicating a need for greater understanding of the precursors and causes of adverse birth outcomes. In particular, less is known about the relationship between past obstetric events such as interventions during labour and mode of delivery, and subsequent adverse birth outcomes.

Linking the Australian Longitudinal Study of Women’s Health (ALSWH) to other administrative data sets affords the opportunity to investigate past reproductive events and their relationship to subsequent birth outcomes, for up to 13 years before giving birth. The study aims to investigate both short and long term risk factors for birth outcomes (premature birth, low birth weight, congenital conditions, stillbirth and neonatal death) and maternal factors including reproductive health history, health behaviours, health status, health service use and life events. The CHeReL linked the ALSWH to the NSW Midwives Data Collection, NSW Perinatal Death Review, NSW RBDM death registrations and ABS Mortality Data. Findings will identify risk factors for adverse birth outcomes, improve care for the at risk population, and facilitate the development of targeted interventions to reduce adverse birth outcomes.

Understanding the factors related to health care use associated with falling in older people in NSW.

Dr Rebecca Mitchell, University of NSW

Falls are one of the leading causes of injury morbidity and mortality in older people in Australia, with one third aged 65 years and over experiencing a fall, and half of people aged 80 years and over experiencing one or more falls each year. Fall related injuries are predicted to be an increasingly major cause of hospitalised morbidity in older people. This project sought 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 project aimed to examine the pattern and use of rehabilitation and other related health services for fall related injuries, estimate future demands for rehabilitation and other health services, and identify resource implications for future sub-acute and non-acute treatment following a fall related injury as the ageing population increases.

The Australian National Sub-Acute and Non-Acute Patient (AN-SNAP) is a casemix classification that includes four subacute care types (rehabilitation, palliative care, geriatric evaluation and management (GEM) and psychogeriatric care) and one non-acute care type. AN-SNAP is used to classify and fund subacute and non-acute services in a number of Australian jurisdictions and internationally. The CHeReL linked AN-SNAP to the NSW Emergency Department Data Collection and the NSW Admitted Patient Data Collection for this study.  Findings from the study will be used to inform initiatives to prevent and treat injuries and inform service development for rehabilitation services.

The effect of unintentional injuries during pregnancy on child health at birth and at infancy.

Dr Mary Lam, The University of Sydney

This retrospective cohort study aimed to investigate the effect of unintentional injuries during pregnancy on delivery, birth outcomes, and health status of infants and children up to five years post birth. The underlying hypotheses for the study are that women who have sustained traumatic unintentional injuries during pregnancy will have more complications during labour and delivery, neonates will have more adverse birth outcomes, and infants/children will have long term adverse health outcomes.

The study aimed to investigate complications during labour and delivery such as pre-term delivery, placental abruption and foetal distress; adverse birth outcomes such as birth weight, gestational age, Apgar score, intensive care admission and length of stay in neonates; and adverse health outcomes in terms of readmission to hospital for chronic illness and neurological impairment in infants/children.

For this study, the CHeReL linked records from the NSW Admitted Patient Data Collection for mothers and their babies, the NSW Midwives Data Collection for mothers and babies, and the NSW RBDM death registrations for babies.

Results from the study will provide valuable information on the impact of unintentional injury on birth outcomes and childhood health, and the long term effects arising from these injuries. It will help identify women and babies at high risk so that appropriate care can be implemented sooner.

In hospital and post discharge mortality: Learning about quality of care using data linkages from Australian States.

Associate Professor Katrina Spilsbury, Curtin University

The Public Health Research Network (PHRN) was funded by the National Collaborative Research Infrastructure Strategy (NCRIS) program, state/territory governments and academic partners in order to establish, operate and provide access to health data linkage facilities for the purpose of supporting research of national importance.

Under the PHRN strategy, this demonstration project is the first in Australia to link person based inpatient and mortality data across state and territory jurisdictions. The project serves the dual purpose of developing and testing the data acquisition and linkage processes needed to support ongoing multistate research of this kind, and to demonstrate the value of these linkages in informing a public health issue of national importance - namely mortality during or within 30 days of an inpatient hospitalisation.

To facilitate testing of linkage processes, the CHeReL provided linked data from the NSW Admitted Patient Data Collection, NSW RBDM death registrations, and ABS Mortality Data using two approaches. The first approach involved providing linked data independently of the other linkage sites. Secondly, the Centre for Data Linkage at Curtin University created person based linkage keys using common demographic variables provided by the CHeReL and other jurisdictional linkage units. This allowed the development and standardisation of cross border flows to be examined, allowing for the investigation of mortality within 30 days of hospitalisation.

The epidemiological objectives of this study are consistent with the Australian Commission on Safety and Quality in Health Care (ACSQHC) program of work to develop national indicators for hospital mortality. The techniques tested and refined in this study will potentially streamline the health care and safety measures supported by the ACSQHC, specifically calculation of the hospital standardised mortality ratio.

Analysis of the reproductive outcomes of women with attention deficit hyperactivity disorder.

Dr Alison Poulton, University of Sydney

Although it is more frequently diagnosed in children, attention deficit hyperactivity disorder (ADHD) is becoming increasingly recognised as a problem associated with impairment in functioning in adults. As women enter their reproductive years, concerns arise about the impact of these medications on foetal growth. There are very little data on the reproductive outcomes of women with ADHD and more information is needed in order to understand the short and long term risks.

This study aims to compare the reproductive outcomes of women with ADHD, based on their history of treatment with stimulant medication, with all women giving birth in NSW during the period 1994‐2010 and with matched controls. Cases were women of childbearing age (from early teens to women in their forties) during the study period, who had a diagnosis of ADHD based on prescription of stimulant medication in the Pharmaceutical Drugs of Addiction System (PHDAS). The CHeReL linked these records to the NSW Perinatal Data Collection and the NSW Registry of Births Deaths and Marriages birth registrations. The CHeReL also selected 5 controls for each case from the PDC data but who did not occur on the PHDAS, to compare perinatal data of women not diagnosed and treated for ADHD.

Findings from the study will provide clinicians with information to guide clinical decision making, enabling them to assess the benefits of continuing medication versus discontinuing during pregnancy. 

Modelling multiple radiotherapy treatment episodes for benchmarking and service planning.

Professor Geoff Delaney, Liverpool Hospital

Radiotherapy is a major cancer treatment modality and demand for the first episode of treatment following a cancer diagnosis is well described. However, very little is known about the nature of subsequent treatments although it’s estimated that about one quarter of total capacity is for re-treatment. With demand for radiotherapy services increasing, and waiting lists and delivery shortages in existence, predictive models of need for retreatment will provide important information for service planning.

An initial study investigated patterns of care - including radiotherapy treatment - for lung cancer. This current study seeks to extend the preliminary lung cancer work to include all cancers.  It aims to describe patterns of retreatment by radiotherapy of cancer patients, develop methods of modelling retreatment, and apply modelling methods to improve the estimates of demand for radiotherapy so that services may be better planned and benchmarked.

To facilitate this the CHeReL linked the database from the Liverpool/Campbelltown cohort of patients treated by radiotherapy with the NSW Central Cancer Registry, in order to obtain death information, degree of spread at diagnosis, diagnosis dates and morphology information.

Findings from the study will provide a unique insight into the retreatment of cancer patients by radiotherapy and create a method that will be able to be applied to other major cancer treatment modalities such as chemotherapy. The study will enable the establishment of actual patterns of practice and lay the groundwork for reporting and predicting retreatment activity for radiotherapy.

Hormone therapies for early breast cancer; health outcomes and policy implications. 

Professor David Preen, University of Western Australia

Breast cancer is the most common cancer in Australian women, with up to one in nine women expected to be diagnosed by age 85 years. Breast cancer incidence has seen a substantial increase over the last three decades, but correspondingly survival has also improved significantly. Clinical trial evidence has demonstrated that use of hormone-blocking therapies for at least five years after removal of the initial tumour significantly reduces breast cancer recurrence and mortality. However there is little evidence on the real world use of these therapies in Australian practice, which therapies or combinations of therapies are used, how adherent women are to these therapies, or the outcomes of long term use at the population level.

Using a cohort of women with breast cancer identified from the 45 and Up Study, the CHeReL linked these records to the NSW Central Cancer Registry, the NSW Admitted Patient Data Collection, the NSW Registry of Births Death and Marriages, and ABS mortality data. Pharmaceutical Benefits Scheme and Medicare Benefits Schedule data, available from the 45 and Up Study, were also included in the linked dataset.

Findings from the study will provide valuable evidence on the real world use of hormone treatment for breast cancer at a population level. This will facilitate the evaluation of the degree to which hormone therapy adheres to the current NH&MRC guidelines and determine factors predictive of non-compliance with clinical guidelines. Findings will increase understanding of the early and long term treatment of breast cancer with hormone therapies in Australian clinical practice.

Interactions of cancer and chronic kidney disease.

Dr Germaine Wong, Centre for Kidney Research, The Children’s Hospital Westmead

People with chronic kidney disease (CKD) experience a two and three-fold increased risk of cancer compared with the general population, and the increased risk begins in people with mild to moderate kidney disease. Given that around 10% of the Australian population has signs of kidney disease this has population level importance. There is also emerging evidence from population studies that cancer survival in the end-stage kidney disease (ESKD) and kidney transplant population is reduced compared to the age and gender-matched general population. However, the relationship between progression of CKD over time and cancer risk, and the effect of mild to moderately reduced kidney function on cancer-specific mortality are largely unknown.

This study sought to examine the impact of changes in reduced kidney function over time and risk of incident cancers and cancer recurrences; and site-specific cancer mortality in people with mild to moderately reduced kidney function. Participants in the Blue Mountains Eye Study (BMES) formed the cohort, and were linked by the CHeReL to the NSW Central Cancer Registry.

This study will provide an insight to the progression and behaviour of cancers in people with chronic kidney disease, and may also confirm the suggestions that uraemia and other potential risks in chronic kidney disease may contribute to the development of neoplastic disease. If confirmed, the findings can inform appropriate surveillance initiatives for people in a high risk category for the development of cancer.

Place of birth and perinatal outcomes in New South Wales.

Associate Professor Elizabeth Sullivan, Perinatal and Reproductive Epidemiology Research Unit, University of NSW

Australian women have the option of giving birth in a range of different settings depending on personal preference and the progression of their pregnancy. Models and settings vary, with some attached to or co-located with hospital maternity services. This study aimed to examine the place of birth and associated outcomes for women and their babies in different birth settings. Specifically, the study examined perinatal outcomes for women who intended to give birth in birth centres compared with hospital labour wards, and the impact of place of birth on baby outcomes, including congenital anomalies.

The CHeReL linked records from the NSW Midwives Data Collection (MDC) to the NSW Admitted Patient Data Collection, the NSW Register of Congenital Conditions, NSW Perinatal Death Review data, ABS perinatal mortality data, ABS (maternal) mortality data and NSW RBDM death registration data. Unlinked records from the NSW MDC were also included.

The outcomes of this project will improve knowledge of place of birth and associated perinatal outcomes. These findings have the potential to inform appropriate care choices, inform policies and practice to provide best practice and enhance quality of care, and ultimately improve health outcomes for women and their babies.

Development and evaluation of composite clinical indicators of hospital performance for comparative assessment of the quality of surgical care for colorectal cancer.

Professor Jane Young, University of Sydney

There is evidence that clinical care for colorectal cancer is highly variable and not in accordance with evidence based clinical practice guidelines. Accurate and timely clinical audit using measures of clinical performance associated with patient outcomes is essential to monitor the quality of clinical care; however there is no established ongoing monitoring system for clinical audit of colorectal cancer in NSW. This study aimed to investigate the use of currently collected data to improve timeliness and reduce the resource intensiveness of ad hoc clinical audit against practice guidelines. Specifically the study aimed to describe hospital variation in processes and outcomes for patients with colorectal cancer, and identify patient, surgeon and hospital related factors contributing to the observed variation. The study will also attempt to develop a set of hospital level process and short term clinical outcome measures that are associated with longer term survival, plus investigate the strengths and limitations of currently collected data items available for clinical audit.

For this study the CHeReL linked the NSW Central Cancer Registry to the six NSW clinical cancer registries, the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW RBDM death registrations and ABS mortality records.

Findings from this study will inform the development of a set of indicators suitable for clinical audit, and the utility of existing data for this purpose. If successful this information will be a valuable factor in the development of an ongoing clinical audit for colorectal cancer, which will ultimately improve outcomes for people with this cancer. 

The ‘Candida in Pregnancy Study (CiPS)’ – a randomised trial with pregnancy outcomes from routinely collected data. 

Professor Jonathan Morris, The Kolling Institute

Prevention of preterm birth remains one of the most important challenges in modern maternity care. The ‘Candida in Pregnancy’ (CiPS) study is a cohort study of pregnant women with a positive screen for candidiasis that includes a nested randomised controlled trial (RCT). The cohort determines candida carriage rates in early pregnancy and factors associated with asymptomatic candidiasis, and the RCT evaluates whether treatment of women with asymptomatic candidiasis reduces the preterm birth rate.

In order to obtain baseline and outcome data for women enrolled in CiPS, plus comparative data with women who do not have candidiasis, the cohort was linked to routinely collected data by the CHeReL, namely data from the NSW Admitted Patient Data Collection, the NSW Perinatal Data Collection, the NSW Registry of Births Deaths and Marriages death registrations, and the ABS Mortality data. In addition a mother-baby linkage was undertaken to all these data sets plus the NSW Registry of Births, Deaths and Marriages birth registrations and the NSW Perinatal Death Review. This linkage enabled a comparison of maternal and pregnancy characteristics, and outcomes among woman with asymptomatic candidiasis and those without candidiasis; plus an evaluation of the impact of treatment for candidiasis on preterm birth, other adverse pregnancy outcomes, and maternal health. A linkage to education data in the future will enable the assessment of child health and educational outcomes.

If the findings from this project demonstrate that treatment of asymptomatic candidiasis reduces preterm births this will change current practice internationally and will directly impact the management of every pregnant woman.

   

Concord Health and Ageing in Men Project (CHAMP) – Data Linkage 

Professor Robert Cumming, University of Sydney

The Concord Health and Ageing in Men Project (CHAMP) was established to investigate the consequences and inter-relationships of the major geriatric syndromes for men aged 70 years and over, namely falls, fractures, cognitive impairment and dementia, urinary symptoms and incontinence, and poor mobility and functional dependence. Men are followed up intermittently and undertake self-completed questionnaires and clinical assessments to determine physical, neuropsychological and biological functioning.

In order to enrich the understanding of health trajectories for men of this age group, CHAMP data were linked by the CHeReL to the NSW Admitted Patient Data Collection, NSW Cancer Registry, ABS Mortality Data and NSW Registry of Births Deaths and Marriages death registrations. Data linkage to the CHAMP cohort has provided the opportunity to study the health status of participant’s over the continuum rather than just intermittently at follow up, offering the potential to substantially value-add and extend the available data for investigation. Linkage to disease data from the NSW Cancer Registry, plus hospital and mortality data will facilitate investigations that contribute to the understanding of the risk, protective, social and environmental factors that influence disease, disability and death. Finally, the linkage with routinely collected data has added the potential to identify new and innovative research questions that could not be otherwise investigated.

 

 Diabetes case detection through Emergency Department admissions 

Associate Professor N Wah Cheung, University of Sydney and Westmead Hospital

Hyperglycaemia is common amongst patients who are admitted to hospital through the Emergency Department, many of whom were not previously known to have diabetes. There is research to show that hospital patients with recently detected hyperglycaemia have poor follow up, despite the evidence from other studies demonstrating that many people are diagnosed with diabetes on follow up testing. Failure to properly assess people with hyperglycaemia in the Emergency Department is a missed opportunity to diagnose a population at risk and implement treatment which may improve outcomes.

This study aims to determine if routine glucose screening in the Emergency Department combined with an automated HbA1c testing and notification to Diabetes Services for those who are hyperglycaemic, leads to improved detection and follow up of diabetes as a result of the hospital admission. Specifically, the study will establish a system of routine blood glucose measurement in the Emergency Department and investigate if the system leads to improved outcomes.

In total 18 hospitals across NSW are involved in this cluster randomised trial. Data from people attending participating hospitals and having a blood glucose level taken were recorded and a case list prepared. For efficiency and accuracy additional patient details were obtained from the NSW Admitted Patient Data Collection (APDC). To provide these additional details the CHeReL extracted records for the case list from the Master Linkage Key for the NSW APDC and deaths from the NSW Registry of Births Deaths and Marriages and the Australian Bureau of Statistics.

This project presents an opportunity to improve outcomes for people at high risk due to undiagnosed diabetes. Results from this study will also inform clinical guideline recommendations from the Endocrine Network of the Agency for Clinical Innovation.

 

 Developmental Trajectories in Australia: Perinatal outcomes and child development (risk and protective factors)

Associate Professor Sally Brinkman, Telethon Kids Institute

Governments are becoming increasingly interested in the early determinants of children’s health, development and wellbeing in order to inform services needed to better support children and their families. Health and education research suggests that to do this, a comprehensive understanding of health, development and learning outcomes is required which necessitates information about child, teacher, school, community and societal factors.

In order to inform and improve services, and develop and implement universal and targeted strategies for improvement, an understanding of the complexities of the patterns of child development across population groups is needed. Such initiatives can be better informed through longitudinal population based data linkage systems.

This project aims to explore the relationship between perinatal outcomes (e.g. birth weight), developmental outcomes as measured by the Australian Early Development Index (AEDI), and resultant educational outcomes. By obtaining data from all States and Territories, it seeks to investigate both within and between jurisdictional differences in child developmental trajectories.

This project is the first of its kind in Australia to link person based perinatal and local education data with data from the National Australian Early Development Census (AEDC) across jurisdictions. On behalf of NSW and the ACT, the CHeReL linked the NSW and ACT Perinatal Data Collections, NSW and ACT Births data, NSW Best Start Kindergarten Assessment, NSW School Enrolment Form data, NSW and ACT National Assessment Program Literacy and Numeracy (NAPLAN) data, ACT Performance Indicators in Primary Schools (PIPS), ACT Kindergarten Health Check data, ACT School Enrolments,  and ACT School Attendance data, to the AEDC held by the Australian Government Department of Education.

This project provides the opportunity to measure the impact of perinatal outcomes on educational attainment and health outcomes, and to explore these differences by population subgroups and characteristics. The results will be used to inform services and provide essential support for children and families.

  

Defining the burden and long-term outcomes of central nervous system (CNS) infections in Australian children 

Dr Gulam Khandaker, The University of Sydney and Children’s Hospital Westmead

Central nervous system (CNS) infections including meningitis, encephalitis, and myelitis are important causes of mortality and morbidity in children. The pathogens responsible are most commonly bacteria or viruses, but may also be fungi or parasites. The burden and aetiology of CNS infections in children vary over time, by geographic region, age, co-morbidities and vaccination policies. There are limited Australian data on either the epidemiology of CNS infections in Australian children or their long-term outcomes, but selected publications from North America and Europe report declining mortality. However this brings with it the likelihood of more childhood survivors living with long term morbidity and disability.

This study aimed to determine the incidence, aetiology and mortality of children aged less than 15 years hospitalised with CNS infections over the preceding decade, and to estimate long term morbidity as shown by health service use, long term disability score, neurodevelopment, mental and behavioural outcomes. Risk factors for admission and death were also studied.

Using a frequency-matched population based case control design, children admitted to NSW hospitals with a CNS infection were compared with a randomly selected matched control extracted from the Perinatal Data Collection. For this study, the CHeReL linked the NSW Admitted Patient Data Collection to the NSW Perinatal Data Collection and ABS mortality records, and selected the matched controls.

Results from this study facilitated the development of evidence-based public health policy and clinical guidelines in order to prioritise prevention strategies such as vaccination campaigns, service provision during and after admission, and improve clinical practice.

  

An integrated national assessment of cervical cancer prevention, incidence and survival for Australian Aboriginal and Torres Strait Islander women.  

 Professor John Condon, Menzies School of Health Research

 Cervical cancer is one of the most preventable cancers but despite this it has a much greater impact on Indigenous than other Australian women. Although national data are not available, local reports indicate that Indigenous women have lower participation in screening, are diagnosed later with more advanced disease, and have higher incidence, higher mortality and lower survival rates.

 Australia has had a nationally coordinated approach to cervical screening (the National Cervical Screening Program) since the early 1990s, including state based Pap Test Registers that provide data to monitor and evaluate cervical screening. However, the registers do not record Indigenous status because this information is not on the pathology forms sent to the registers. Consequently, no national data on cervical screening participation or follow up after abnormal results for Indigenous women are available.

 By linking the state based Pap Test Registers to hospital attendance data, which has a known high level of accuracy for recording of Indigenous status, a high proportion of records on the Pap Test Registers can have Indigenous status appended. The CHeReL linked hospital attendance data and data from the Cancer Registries for NSW and the ACT to the NSW Pap Test Registry data, and provided this to the national data set.

 This study provides the opportunity to assess the effectiveness of the National Cervical Screening Program for Indigenous women for the first time since the co-ordinated screening program began in 1991. The data will be used to investigate participation in screening, prevalence of abnormal results and timeliness of investigation for abnormalities, time trends, and outcomes such as survival. The influence of factors such as remoteness of residence, socioeconomic disadvantage, age and co-morbidities can also be studied. This information can be used to establish culturally appropriate programs to improve screening for Indigenous women to prevent cervical cancer.

 

Epidemiology and outcomes of vascular surgery in older patients in New South Wales 

Associate Professor Vasi Naganathan, University of Sydney and Concord Hospital

Vascular diseases are more prevalent as people age; however often patients of very advanced age require vascular surgical intervention. Older patients having vascular surgery have a higher risk of adverse perioperative outcomes than younger patients, in particular higher overall mortality, more complications, increased reintervention and longer hospital stays. Strategies to improve perioperative outcomes in older people are hindered by limited evidence and prior to this project there was no published report outlining the outcomes of vascular surgical interventions in New South Wales hospitals.

This project aimed to provide a descriptive epidemiological overview of vascular surgery in NSW with a focus on older patients. Secondly using a cohort study design, the project aimed to investigate the impact of vascular surgery on patient centred outcomes such as discharge destination, length of stay, rehabilitation requirements, use of community services, repeat surgery and unscheduled readmissions, and mortality; and from there identify modifiable factors that would be amenable to quality improvement initiatives. Finally it sought to establish the impact of the structure and provision of health care services on patient outcomes following vascular surgery. 

To facilitate this project the CHeReL linked records from the NSW Admitted Patient Data Collection, the NSW Registry of Births Deaths and Marriages death registrations, and the ABS Mortality Data.  Study findings will feed into quality improvement initiatives to improve outcomes for older patients undergoing vascular surgery.

 

Observing Recurrent Incidence of Adverse Outcomes following Hospitalisations (ORION) 

 Dr Isuru Ranasinghe, The University of Adelaide

 As a leading cause of death, disability, and health care expenditure, hospital-based cardiovascular care has a significant impact on the Australian health care system. However, hospital cardiac care varies considerably and important well accepted measures of care quality such as death or unplanned return to hospital are rarely assessed. ORION study seeks to developed robust methods to evaluate these outcomes along with hospital level variation and temporal changes in these measures.

 Selecting records for patients with common cardiovascular conditions and procedures, the CHeReL linked data from the NSW Admitted Patient Data Collection and the ACT Admitted Patient Collection, the NSW Emergency Department Data Collection and the ACT Emergency Department Information System, the NSW Registry of Births Deaths and Marriages death registrations and ACT Registry of Deaths. Results from this study helped to inform the extent of variation across Australian hospitals and the impact of this on patients. This offers opportunities to identify targets for quality improvement efforts, improve patient care and reduce health care costs.

 

Population level relevance of risk factors for cancer in Australia 

Dr Maarit Laaksonen, Centre for Big Data Research in Health and University of NSW

This project sought to describe the proportion incident cancers that were attributable to lifestyle exposures such as smoking, alcohol consumption, poor diet, overweight, physical inactivity, and reproductive and hormonal factors.

Cancer prevention is most effective when strategies target modifiable risk factors responsible for the greatest number of cancer cases in the population of interest. Although several studies estimating the relative risks associated with modifiable risk factors for different cancers have been published, both in Australia and internationally, their relative importance at the population level has not been sufficiently examined.

 The Population Attributable Fraction (PAF) is a statistical measure which integrates the strength of association (relative risk) between exposure and the cancer of interest, and the prevalence of exposure in the population. Using a flexible method developed by the authors for the estimation of PAF and its confidence interval from cohort studies, PAF was used to evaluate and compare the cancer burden attributable to different risk factors at the population level.

 Participants pooled from seven established Australian cohorts (the 45 and Up Study, the Melbourne Collaborative Cohort Study, the Australian Longitudinal Study on Women’s Health, the Australian Diabetes, Obesity and Lifestyle Study, the North West Adelaide Health Study, the Blue Mountains Eye Study, and the Concord Health and Ageing in Men Project) were linked to the Australian Cancer Database (ACD) and the National Death Index (NDI). The CHeReL linked records from the 45 and Up Study and the NSW Admitted Patient Data Collection, and provided these to the Australian Institute of Health and Welfare for linkage to the ACD and the NDI.

 Use of this method provides more accurate estimates of the avoidable cancer burden, essential in prioritising interventions and policies aimed at preventing cancer in Australia.

 

Hospitalised injury in NSW: a geographical comparison 

Associate Professor Rebecca Mitchell, Australian Institute of Health Innovation, Macquarie University

Rural residents are known to experience higher rates of injury related mortality and morbidity compared to their urban counterparts, with hospitalised injury rates for rural residents about 1.4 times higher than urban residents. In terms of work-related injuries, the agricultural industry has one of the highest rates of injury of all Australian industries.

 Previous analyses of hospitalised injury comparing rural and urban residents did not use linked hospitalisation and mortality collections which has limited the ability to examine important measures such as hospital readmissions and mortality post hospital discharge. The impact of individual co-morbidities on patient outcomes, and the cost of hospital treatment for injuries, has also been limited.

 This project aimed to examine injury hospitalisations in NSW and compare the characteristics of injury requiring hospitalisation among rural and urban residents in NSW. Specifically the project described the number, incidence, characteristics and costs of injury related hospitalisations in rural and urban residents; compared trends over time; examined patient outcomes such as length of stay, unscheduled readmission to hospital, and 30 day mortality for different injuries and their causative mechanisms; and investigated the number and characteristics of work related agricultural hospitalised injuries in NSW. To facilitate this study the CHeReL linked records from the NSW Admitted Patient Data Collection, the NSW Births Deaths and Marriages death registrations, and the ABS Mortality data.

 Findings from this project will feed into targeted injury prevention initiatives that meet the specific needs of urban and rural residents. In particular identification of the specific factors associated with work-related hospitalised injuries of rural residents will feed into the development of injury prevention measures for this sector.

 

Unwarranted clinical variation following hospitalised injury in young people in NSW: Informing trauma and healthcare practices 

Associate Professor Rebecca Mitchell, Australian Institute of Health Innovation, Macquarie University

Hospital-acquired medical complications following injury or trauma, such as respiratory infections, wound and urinary tract infections, and air or fat embolus, are known to negatively impact on patient outcomes in terms of length of stay, unscheduled readmission to hospital following discharge, cost of treatment or 30 day mortality. However the extent to which medical complications affect young people who are hospitalised in NSW public hospitals for injury is unknown. The common risk factors for complications in young people hospitalised for injury are also poorly understood.

Using a retrospective epidemiological study design this project aimed to examine patient and hospital outcomes related to the hospital treatment of injuries in young people aged 25 years or less. In particular, the project aimed to describe the number, type and cost of medical complications; identify patient risk factors for medical complications by type of complication, injury or medical procedure; and examine indicators of unwarranted clinical variation between public hospitals. The CHeReL linked records from the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, death registrations from the NSW Registry of Births Deaths and Marriages, and the ABS Mortality data.

 Findings from this project will feed into health care improvement strategies and interventions to prevent the complications most common in young people experiencing injury and trauma. There will also be opportunities to inform clinical guidelines, policies and procedures for management of injury and trauma in young people admitted to hospital for these conditions.

 

 The relationship between psychosis and offending in New South Wales - A data-linkage study: implications for mental health policy development 

Dr Stephen Allnutt, Justice Health and Forensic Mental Health Network, NSW Ministry of Health and University of NSW

This project will provide insights into the relationship between psychosis and contact with the criminal justice system in NSW. Whilst the association between psychosis and violence is well documented, there had been no examination of the relationship between psychoses and offending in NSW. There are considerable costs involved in hospitalisation for psychosis, and in running the criminal justice system. Therefore, any new knowledge informing the pathways into the criminal justice system and the role of mental illness in this trajectory is of interest to health and criminal justice policy makers, and offers personal benefits to those in contact with the justice system and also the broader community.

The project will utilise NSW health service data, data from the NSW Bureau of Crime Statistics and Research (BOCSAR), and Corrective Services NSW data. CHeReL has linked the following data sources for this study: the NSW Bureau of Crime Statistics Reoffending Database (ROD), NSW Offender Integrated Management System (OIMS), the Mental Health Outcomes and Assessment Tool Collection (MH-OAT), and the Pharmaceutical Drugs of Addiction System: methadone subsystem (PHDAS), to the NSW Admitted Patient Collection (APDC), NSW Emergency Department Data Collection (EDCC), NSW Mental Health Ambulatory Data Collection (MH-AMB), and NSW Registry of Births Deaths and Marriages death registrations (RBDM). This linkage facilitated investigation into psychosis and subsequent offending behaviour uses a case-control design. Cases diagnosed with psychosis during a hospital admission or attendance at an ED will be followed up for possible subsequent offending behaviour and compared with controls with no psychosis from the NSW electoral roll. Measurement of the proportion of prisoners with psychosis who had had contact with a community mental health service prior to incarceration, plus the post release rate and causes of mortality will also be examined.

The potentially modifiable nature of risk factors mediating the association between psychosis and offending behaviour has attracted a significant scientific and public interest. It is envisaged that findings from this and future research into the relationship between psychosis and offending will inform better policy development with the aim of reducing offending behaviours by people with psychosis.

 

Living with acute coronary syndrome: what happens to people in the early years after discharge from hospital with a coronary event in Australia. 

Associate Professor Julie Redfern, The George Institute for Global Health.

In May 2012, 478 hospitals across Australia and New Zealand participated in an audit – ‘SNAPSHOT’ - to examine the current management of Acute Coronary Syndrome (ACS). The study revealed that only one quarter of people admitted with ACS received optimal in-hospital preventive care. To examine the post-discharge care of people with ACS and inform future clinical policy and practice the Australian cohort were contacted 18 months later to determine health outcomes, medication use, health service utilisation and costs associated with living with ACS.

The current project sought to supplement the information collected in the initial and follow up studies, with additional information from the Medicare Benefits Schedule (MBS), the Pharmaceutical Benefits Scheme (PBS), health services data and mortality data nationally. The aim was to obtain comprehensive information on medical services accessed and whether evidence based care was delivered, and the impact of receiving – or not- evidence based care on further cardiovascular events and hospital readmissions. The CHeReL linked the cohort to the NSW Admitted Patient Data Collection and the NSW Emergency Department Data Collection, the ACT Admitted Patient Care data and the ACT Emergency Department Information System, and provided these records to the Australian Institute of Health and Welfare for linkage to the MBS and PBS data.

SNAPSHOT is the leading contemporary research describing and informing heart disease care in Australia and New Zealand. Ultimately results from the study will be used to pursue service redesign and policy development for the management of heart disease.

 

Prescribed medicines use and outcomes in Australian Government Department of Veterans’ Affairs (DVA) clients 

Professor Sallie-Anne Pearson, Centre for Research Excellence (CRE) in Medicines and Ageing University of Sydney

 The Centre for Research Excellence in Medicines and Ageing was established under a grant from the NH&MRC, with the objective of generating quantitative evidence on the use, safety, costs and cost effectiveness of ageing-related medicines; and to work with agencies to utilise this evidence in policy formulation, evaluation and decision making, plus build national workforce capacity in pharmaco-epidemiology research and policy translation. Professor Sallie-Anne Pearson, Centre for Research Excellence (CRE) in Medicines and Ageing University of Sydney

 This application sought to establish a program of research to investigate the use and impact of prescribed medicines in Australian Government Department of Veteran’s Affairs (DVA) clients. A pre-existing data set, linked by the CHeReL, was prepared following an approval to undertake a similar program of work on the use and impact of cancer medicines in DVA clients. The current application sought permission to use an existing dataset of DVA client data linked to the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, the NSW Cancer Registry, and death registrations from the NSW Registry of Births Deaths and Marriages and ABS Mortality Data.

 The findings from this program of work will generate evidence on the characteristics of treatment populations, durations of medicines use and variation in treatment patterns, in turn facilitating benchmarking against best practice guidelines and the establishment of appropriate treatment in specific populations and settings. Cohort studies will assess outcomes against exposure to specific medicines, and will enable assessment of the benefits and risks of specific treatments. It will also be possible to undertake post-marketing surveillance of medicines to assess safety, efficacy and quality; key parameters for initial and continuing registration of medicines in Australia.

 

Improving NTD ascertainment in NSW: supplementing data for a national incidence study from linked records. 

Dr Lisa Hilder, National Perinatal Epidemiology and Statistics Unit (NPESU)

The purpose of this study was to utilise data linkage to improve data quality and case ascertainment for neural tube defects (NTDs) in NSW.  NTD data from the NSW Registry of Congenital Conditions (NSW RoCC) contributed by NSW to a national study the incidence of NTD before and after mandatory fortification of flour in bread was incomplete by up to 40%, particularly for pregnancies ending in termination of pregnancy before 20 weeks gestation and 27% of those cases that were provided had missing information about maternal age and/or maternal Indigenous status.  

 NSW Admitted Patient Data Collection (APDC) data cannot discriminate between NTD and non-NTD central nervous system (CNS) conditions in pregnant women with a known or suspected fetal anomaly, so data for this linkage used CNS cases from source datasets. CHeReL undertook two data linkages: data from the APDC about pregnant women with a fetus known or suspected to be affected by a CNS anomaly (APDC-pregnancies) and Perinatal Data Collection (PDC) data  linked by mother with RoCC records with a CNS anomaly;  and data from the NSW Perinatal Deaths Review (PDR), neonatal admissions from  with a CNS anomaly and Perinatal Data Collection (PDC) data  linked by baby with RoCC records with a  CNS anomaly.  This resulted in four case groups: APDC-baby and/or PDR cases linked by baby with a RoCC case; APDC-pregnancy cases linked by mother with a RoCC case; APDC-baby and PDR records not linked with a RoCC case; and APDC-pregnancies not linked with a RoCC case.  RoCC data can include both a  mother and a baby identifier and will be used to reconcile cases with both a mother and a baby linkage.  APDC-baby records and PDR records can be separated into NTD and non-NTD anomalies. Further information will need to be sought using site-specific data collections for APDC-pregnancy records to enumerate additional NTD cases.

 

Fall-related and other health service use in Stepping On participants and other older adults. 

Professor Cathie Sherrington, The George Institute for Global Health and the University of Sydney

Thirty per cent of people aged 65 years and over fall annually, and these falls and fractures have a major impact on older people, their carers, health services and the community. With the ageing population the personal impact and health care burden associated with falls is predicted to increase. Currently, little is known about long term health service use in older fallers and such information has the potential to contribute to health service planning.

 The Stepping On fall prevention program has been implemented throughout NSW since January 2009 but its impact on fall related health service use has not been investigated. This project aimed to use routinely collected information to document total and fall related health service use and costs following a fall requiring hospitalisation; and compare fall related health service use and costs in Stepping On participants pre and post program participation, with matched controls. Matched controls were selected from two different sources.

 The CHeReL linked records from the Stepping On participant’s data set to the NSW Admitted Patient Data Collection (APDC), the NSW Emergency Department Data Collection, the NSW Ambulance Service Computer Aided Dispatch and Patient Health Care Record/Electronic Medical Record databases, plus death registrations from the NSW Registry of Births Deaths and Marriages, and ABS Mortality Statistics. The CHeReL also selected the two sets of matched controls; one set without dementia were selected from the NSW APDC, and the second set were community dwelling controls participating in the 45 and Up Study, who had previously reported a fall.

 Fall related injuries in older people are a significant source of morbidity and health expenditure. The results from this project will provide information which will contribute to health service planning and strategies to better support older adults who are at risk of falls, particularly falls warranting hospitalisation.

 

 Dr Mary Lam, The University of Sydney, Professor Lawrence Lam, University of Technology Sydney & Discipline of Child and Adolescent Health, The University of Sydney

Professor Gary Browne, Children's Hospital Institute of Sport Medicine and Emergency Department, CHW, The University of Sydney

 Concussion is one of the most common problems presenting to the emergency department, with over 300,000 presentations annually in Australia and increasing. Childhood concussion may have significant neurological and psychosocial effects, and more severe concussion with loss of consciousness may have long term sequelae that can take months to return to normal function. There is limited information on the persistent ongoing effects post-concussion, and whilst physical functioning may return to normal, there is still limited evidence surrounding the long term psychiatric and mental health effects. Moreover most of the evidence to date has investigated sports related injuries; consequently there is a need to investigate sports and non-sports injuries, and multiple concussions between both, on a population basis.

 This project was designed to investigate two key aims; firstly to determine incidence rates of multiple sports and non-sports concussions and calculate the risk ratio of multiple concussions from different activities; and secondly, to investigate the long term effects of single or multiple concussions on the psychiatric and mental health of young people. The project was also designed to be a feasibility study for a larger program of work, including the development of a Child and Adolescent Mild Traumatic Brain Injury Registry. The intent of this component of the project was to determine the quality and depth of currently available information and identify the additional data that are not available in existing collections. For this project, the CHeReL linked records from the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, the NSW Mental Health Ambulatory Data Collection, death registrations from the NSW Registry of Births Deaths and Marriages, and the Cause of Death Unit Record File.

 By determining the magnitude of this health problem and documenting valuable information on the effects of single and multiple episodes of concussion on psychiatric and mental health, this study will make a valuable contribution to the literature. Findings from the study will be used to design injury prevention programs to reduce risk of injury and reduce subsequent repetitive concussions that may cause more serious damage.

 

The burden and cost of injury attributable health care use and mortality in Australia

A/Professor Rebecca Mitchell, Australian Institute for Health Information, Macquarie University 

This project was conducted for the Population Health Research Network (PHRN) as one of the proof of concept projects for national data linkage. The project broadly aimed to describe the health care use and mortality of injured people in Australia and to quantify the extent to which these outcomes can be attributed to their injury. The project had both logistical and epidemiological aims, including (1) to identify an injured (via an index hospital admission) and non-injured (randomly selected via electoral rolls) cohort matched on age group, gender and area of residence; (2) to detect the extent of any cross jurisdictional border use of health care facilities (i.e. ED presentations and/or hospital admissions) for each cohort; (3) to describe health care use (in terms of ED presentations and/or hospital admissions) of injured and non-injured cohorts; (4) to describe the cause and incidence of mortality in the injured cohort and matched non-injured cohort (1 year post the date of injury); and (5) to quantify the morbidity and mortality attributable to the index injury by comparing health care use of the injured and non-injured cohort (controlling for pre-injury health service use).

 The injured cohort were selected using ICD-10 codes from the NSW Admitted Patient Data Collection (APDC). The non-injured cohort were randomly selected from the NSW Electoral Roll matched by age group, gender and postcode. Linked records from the APDC, NSW Emergency Department Data Collection (EDDC) and NSW RBDM death registrations for the injured and non-injured cohort were extracted from the Master Linkage Key by the CHeReL. National Data Linkage was conducted by the National Centre for Data Linkage (CDL).

 This research will contribute to informing worldwide research efforts on injury-related disability and comorbidity. In addition, the research will demonstrate the feasibility of cross-jurisdictional data linkage using the PHRN, enabling existing health data from around Australia to be brought together and made available for health and health-related research purposes.

 

 

Investigating services provided in the residential care environment for dementia (INSPIRED NSW) 

Professor Maria Crotty, Flinders University

Dementia is not a part of normal ageing, and it is the single leading cause of disability burden for people aged 65 years and over. Dementia has now been recognised as the ninth National Health Priority Area. Research undertaken by the AIHW in 2011 demonstrated that over half of residents living in Australian aged care facilities had a recorded diagnosis of dementia at that time.

INSPIRED is a cross-sectional, observational study designed to evaluate the specialised dementia services currently being provided at residential aged care facilities across Australia. Its aim is to determine the cost of, and outcomes from, current residential care service models for people with cognitive impairment and dementia in Australia. Key outcomes of interest include quality of life, quality of care, care preferences, and utilisation of healthcare resources.

In order to expand the breadth and depth of investigations of resource use and health outcomes that were possible from data provided by participants in the INSPIRED study directly, the CHeReL linked records for the NSW participants of the study to the NSW Admitted Patient Data Collection and the NSW Emergency Department Data Collection. Additional linkages to the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme are also planned.

These data will contribute to a detailed analysis of the outcomes achieved under different service models nationally, and their alignment with the stated preferences of people with dementia.  From this, innovative new models of care and/or funding can be developed to emphasise consumer directed care and more effective and efficient service provision.

 

 Care pathways of individuals diverted from local court into the mental health system in New South Wales 

Associate Professor Kimberlie Dean, Justice Health and Forensic Mental Health Network, University of NSW

 

Many jurisdictions facilitate diversion of those with mental ill health who come in contact with the criminal justice system from court to mental health services, on the basis that such individuals need mental health treatment rather than criminal sanction. Court diversion or liaison teams operate in these circumstances to assess individuals and make recommendations to the courts with regard to the benefits of diversion for individuals. However little is known about the health care pathways and outcomes for such individuals once diverted and thus the effectiveness of diversion is not established.

 Using data from persons assessed by the State-wide Community and Court Liaison Team (SCCLS) within the Justice Health and Forensic Mental Health Network in NSW, this project aimed to describe the care pathways and outcomes of mentally ill people who were diverted from the criminal justice system for summary offences in NSW. The CHeReL linked records from the SCCLS and the Adolescent Health Court Consultation and Liaison Service database to the NSW Bureau of Crime Statistics and Research reoffending database, NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, the NSW Mental Health Ambulatory Data Collection, and death registrations from the NSW Registry of Births Deaths and Marriages, and ABS Mortality Data.

 This important research provided a unique opportunity to assess the effectiveness of court diversion and to inform recommendations for improvement. It provided a better understanding of the patterns of healthcare pathways and outcomes following diversion and the factors that dictate successful diversion into mental health services from the criminal justice system. The findings will assist in future service development to reduce the amount of time that mentally ill persons spend in custody, thus reducing the effect of detention on their housing, employment, health and social contacts. Improvements in the treatment of those with mental ill health in contact with the criminal justice system can have the potential to improve the impacts of mentally disordered offenders on the community both in terms of the burden of their ill health and future criminality.

 

Cognitive decline in the elderly and health service utilisation 

Professor Henry Brodaty, University of NSW

The Sydney Memory and Aging Study is a prospective cohort of 1,037 community residents with and without mild cognitive impairment and dementia. In Australia over 350,000 people with dementia are estimated to have dementia and with the ageing of the population this number is expected to reach 900,000 by 2050. The number of individuals with mild cognitive impairment (MCI) far exceeds the number with dementia, and the health impact of MCI is being increasingly appreciated.

 People with dementia are major users of medical and hospital services, experiencing hospitalisation rates three times higher, and lengths of stay almost twice as long as cognitively intact people of similar age. To facilitate the project aims to examine the associations between cognitive decline and health service utilisation, costs and health outcomes, the CHeReL linked the Memory and Aging cohort to the NSW Admitted Patient Data Collection, the NSW Emergency Department Data Collection, death registrations from the NSW Registry of Births Deaths and Marriages, and the ABS Mortality Data. Using the enhanced data this linkage provided, the project team were able to investigate the effect of hospital events on the long term trajectory of cognition and function; examine the impact of MCI on healthcare utilisation and costs over time; and examine the injury profile and subsequent service utilisation and costs for people with and without MCI.

 The potential burden from an aging population with increasing cognitive decline is substantial. This research will provide a better understanding of the patterns, costs and consequences of health care utilisation of people with mild cognitive impairment in NSW and this information will be used to identify priority areas for research as well as inform and influence policy and planning for this high risk population.

 

Essential clinical annotation for NSW Biobanks through data integration with clinical and administrative datasets

Professor Anna DeFazio and Professor Christine Clarke, University of Sydney, Westmead Millennium Institute and Department of Gynaecological Oncology, Westmead Hospital

Realising better health outcomes and economic gains, through closer alignment of medical research and health care delivery, depends in part on a sustainable and efficient biobanking system within NSW. Longitudinal data linked to biospecimens are invaluable components of such a system, yet currently the processes for collection and retention of longitudinal data are laborious, time‐intensive and costly. Moreover, the data held by biobanks can be incomplete and/or inaccurate. The purpose of biobanks is to have a ‘research ready’ collection of material and data, processed and stored under criteria that optimise the potential for sample use, protect donor privacy, and provide an accurate data set relating to the samples, in order to expedite research programs. Accordingly, this study aimed to test and document the feasibility and validity of augmenting the current methods of data collection for biobanks and investigated the most effective way to streamline and improve the process of collection. The ultimate goal being improved quality of translational research that can be conducted using biobanks samples.

Using cohorts of consenting patients from the Westmead Gynaecological Tissue Bank (GynBiobank) and the Australian Breast Cancer Tissue Bank (ABCTB), this pilot study investigated the feasibility of linking cancer biobanks databases with clinical data routinely collected in NSW Administrative Datasets by analysing and comparing how these data items are collected, and testing the feasibility of accessing and updating data relevant to biobanks through linkage with NSW databases via the CHeReL. Biobank data was linked to the NSW Central Cancer Registry, NSW Admitted Patient Data Collection, and NSW Registry of Births, Deaths and Marriages death registrations.

Linking NSW health data to the biobank data may enable clinical parameters and patient follow-up to be conducted in a cost-effective, efficient manner in the future. It may also enable standardisation of the clinical data collected for each biobank. This will facilitate accurate, consistent data to be provided on specimens with the aim of expediting translational research. The findings from this study are intended to provide the potential evidence for supporting the adoption of routine longitudinal linkage into biobank practices, and the development and implementation of state legislation to support this process.

Transitioning from hospital to home: Effectiveness of occupational therapy home visit discharge planning program for at risk older adults

Professor Lindy Clemson, University of Sydney

Occupational therapy assessments conducted before discharge with at-risk older people aim to enable safe independent transition from hospital to home. Previous research shows how potentially serious problems identified on home visits with the client were not identified in hospital consultations. This study aims to determine the clinical and cost effectiveness of a comprehensive occupational therapy discharge planning intervention which is primarily conducted in the home and is thus contextually relevant and tailored for individual need.

The primary aim of this study is to determine if people who receive the HOME intervention will have: higher levels of functional independence than the control group, and higher levels of participation and resumption of usual life activities compared to the control group. The secondary aim is to determine if the HOME intervention will: i) improve older people’s self-efficacy for carrying out activities of daily living at home and in the community, as well as physical activity and health-related quality of life to a greater degree than the control group; (ii) reduce falls; and (iii) examine if baseline characteristics of participants (age, gender, co-morbidities) are predicative of differential effects of intervention. Additionally, the study will determine the cost effectiveness of the HOME intervention.

The HOME intervention is a randomised controlled trial of occupational therapy discharge planning compared to an occupational therapy in-hospital consultation. The primary end-point was 3 months post-discharge, with a 12 month follow up via phone call to participants to record aspects of functional independence. Follow up through data linkage occurred via the CHeReL of HOME trial participants to NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, and NSW Registry of Births Deaths and Marriages death registrations.  

Evaluation of Osteoporosis Management: Treatment Effectiveness, Policy Utilization and Impacts on Fracture Incidence

Charles Chen, Kolling Institute of Medical Research, The University of Sydney

Osteoporosis is a major public health problem. Although PBS-listed antiresorptive drugs for osteoporosis have been available for over 15 years, the disease is still grossly under-treated in Australia. This highlights the need for identification of barriers to treatment, and assessment of the effectiveness of antiresorptive drugs in clinical practice in ‘real world’ subjects. Future health policy planning for osteoporosis management should include evidence from clinical practice through data linkage studies, so both optimal health outcomes and economic objectives can be achieved.

The aims of this project are (1) to evaluate the effectiveness of antiresorptive drug therapies in ‘real world’ subjects; (2) to determine to what extent current osteoporosis management is ensuring patients with osteoporosis are appropriately treated in Australia; (3) to assess the impact of antiresorptive drug therapies on mortality; (4) to examine adverse drug reaction incidence including esophageal cancer with various antiresorptive therapies; (5) to identify drugs that have adverse skeletal effects and their interaction with antiresorptive drug therapies.

Participants in the 45 and Up Study have been linked to the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Central Cancer Registry, NSW Registrar of Births Deaths and Marriages death registrations and ABS Mortality data collection. It is expected that the results of this study will indicate the overall effectiveness of antiresorptive therapies and reduce concerns related to efficacy of the drugs among some general practitioners and encourage patients to take up the treatments.

The impact of hospital based aged care and dementia services on outcomes for people with dementia admitted to hospital, a regional analysis (Data linkage component)

Diane Gibson, University of Canberra, Brian Draper, University of NSW, Rosemary Karmel, Ann Peut & Phil Anderson, Australian Institute of Health & Welfare.

People with dementia are relatively high users of residential aged care (RAC) and hospitals. The interface between acute and aged care systems has attracted considerable attention for service development, yet hospitalisation remains strongly associated with admission to RAC. People with dementia experience the full range of acute illnesses that require hospitalisation, and there is considerable evidence that there are many hazards for people with dementia when they are hospitalised.

This study set out to describe the service environments for patients with dementia in NSW hospitals, including the types and amounts of service available, generating knowledge about the volume and characteristics of the flow of people with dementia into and out of acute and subacute care, to home and residential care, thereby identifying the potential impacts of service intervention at different points in these flows. The project explored how hospital−based aged care and dementia services influence outcomes for people with dementia who are admitted to hospital by determining how hospitals support rehabilitation of patients with dementia for community living, and what characteristics are associated with high rates of transition from hospital to residential aged care.

Data linkage for a cohort of older hospital patients in NSW with a diagnosis of dementia that contributed to length of stay in hospital and/or cost of treatment and care was linked by the CHeReL to the NSW Admitted Patient Data Collection and linked by AIHW to the Residential Aged Care Data Collection and Aged Care Assessment Program data. Potentially preventable complications of hospitalisation in people with dementia were explored in a doctoral thesis undertaken within the project by Kasia Bail.

Findings will enable recommendations about the types of services and features which produce better outcomes for people with dementia will be provided, and the information produced will be of substantial relevance to policy development, service planning and provision at the hospital, local health district, and state levels.

Surveillance of hospitalisations, hepatocellular carcinoma and mortality among people diagnosed with hepatitis C or hepatitis B virus infection in New South Wales: A population-based linkage study

Professor Gregory Dore and A/Professor Jason Grebely, Kirby Institute, UNSW Australia

In Australia, infection with hepatitis C virus (HCV) or hepatitis B virus (HBV) is associated with increased morbidity, mortality and health-related costs. Fortunately, effective treatment for both infections is available and is associated with the prevention of HCV and HBV-related morbidity and mortality. This project established an annual prospective population based surveillance system for monitoring hospitalisations, hepatocellular carcinoma and mortality among people diagnosed with HCV or HBV infection in NSW. Trends were evaluated and populations at increased risk of HCV and HBV-related morbidity and mortality were identified, generating important data for informing future policy towards the reduction of HCV and HBV burden in NSW. A central question important for policy makers is whether these programs will have an impact on morbidity and mortality at a population level. The proposed estimates of hospitalisations, hepatocellular carcinoma and mortality will also provide the most accurate estimates to inform future mathematical modelling of various strategies for tackling the HCV and HBV epidemics.

The study examined linked routinely-collected health administration datasets to assess morbidity and mortality among people with an HCV or HBV notification. The CHeReL linked the cohort data from the Notifiable Conditions Information Management System (HCV and HBV diagnoses 1993-2012) with NSW Admitted Patient Data Collection, NSW Central Cancer Registry (hepatocellular carcinoma), Cause of Death Unit Record File, NSW Registry of Births Deaths and Marriages (death registrations), HIV administrative dataset, and the Pharmaceutical Drugs of Addiction System (opioid substitution treatment).

This study provides a framework for the development of a surveillance mechanism for assessing HBV and HCV-related hospitalisations, hepatocellular carcinoma and mortality. It has significant potential to inform best practice in prevention of future morbidity and mortality related to HBV and HCVs infection and program strategy implementation at a population level. 

Comparative Effectiveness of 5-FU based chemotherapy for Colorectal Cancer Patients

Professor Marie Ranson, Illawarra Health & Medical Research Institute, University of Wollongong

Colorectal cancer (CRC) is currently the second most common cancer in NSW, accounting for 13% of new cancer cases in 2008. The high prevalence and severe impact of CRC in older populations makes it a large and increasingly important target for improved treatments in an increasingly ageing population. Since the late 1950s, chemotherapeutic treatment of CRC has centred on the use of the fluoropyrimidine 5-fluorouracil (5-FU). Despite the long history of 5-FU use, there is still no universally recognised standard treatment regimen and each appear to be associated with differing toxicity profiles for 5-FU. While many clinical trials and randomised cross-over trials have quantified information on side effects, efficacy and preference, few studies have been conducted that follow-up on patients treated in practice. Retrospective practice-based research can provide important findings that are not revealed in clinical trial studies due to stringent compliance rules and strict inclusion and exclusion criteria (notably the exclusion of patients 70 years and older).

Information collected by Local Health District (LHD) Clinical Cancer Registries was potentially useful for determining the comparative effectiveness of chemotherapy regimens through analysing patient data of all individuals diagnosed with colorectal cancer in NSW. This study therefore set out to determine which chemotherapy regimens for CRC are administered most frequently in NSW, whether the type of chemotherapy treatment prescribed is associated with the diagnostic and demographic details of the patient, and whether there is a survival advantage by taking a particular chemotherapy regimen.

For a cohort of patients diagnosed with colorectal cancer, between 2006 and 2015, six Local Health District Clinical Cancer Registries (South Eastern Sydney LHD, Hunter New England LHD, Northern Sydney LHD, South Western Sydney LHD, Mid North Coast LHD, Western Sydney LHD) were linked by the CHeReL to the NSW Admitted Patient Data Collection, NSW Registry of Births, Deaths & Marriages (death registrations) and ABS Cause of Death Unit Records File. The results of this study will provide the first large scale report on current prescribing habits for colorectal cancer chemotherapy, as well as information on treatment effectiveness in practice.

The safety of pharmacotherapies for smoking cessation

Dr Alys Havard, Centre for Big Data Research in Health, UNSW

Smoking is the leading preventable cause of morbidity and premature mortality in the developed world, and a major risk factor for cardiovascular disease in particular. First line pharmacological smoking cessation aids are among the most cost effective preventive healthcare measures available, in terms of cost per life saved. Although varenicline, bupropion and nicotine replacement therapy (NRT) are available to Australians at a subsidised price, through the Pharmaceutical Benefits Scheme (PBS), highly publicised concerns about the safety of these medications are likely to be limiting their use. Robust evidence from large samples of real-world pharmacotherapy users is needed to establish whether these safety concerns are justified.

This study aimed to investigate the safety of smoking cessation medications by examining whether varenicline or NRT are associated with increased risk of cardiovascular events relative to bupropion; varenicline or bupropion are associated with increased risk of adverse psychiatric outcomes relative to NRT; and bupropion is associated with increased risk of seizures relative to varenicline and NRT. This study also aimed to address certain methodological issues related to the use of administrative data for studies of medication safety. This included examining how estimates of the risk of adverse outcomes change when additional demographic and health status information is available for propensity score matching, and examining the extent to which depression can be accurately ascertained by combining records from multiple administrative data collections. 

For the purposes of the methodological work, the CHeReL linked the 45 and Up Study to the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Registry of Births Deaths and Marriages death registrations, Cause of Death Unit Record File and NSW Mental Health Ambulatory Data Collection. For the main safety analyses, the CHeReL linked the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Registry of Births Deaths and Marriages death registrations, Cause of Death Unit Record File and NSW Mental Health Ambulatory Data Collection. Further linkage of these records to Pharmaceutical Benefits Scheme and Medicare Benefits Scheme records will be conducted by the AIHW.

This study will provide information on whether more widespread use of any of these products is appropriate, and clinically relevant information about whether smokers should receive more encouragement to use smoking cessation pharmacotherapies. The findings will inform clinical guideline development, thereby allowing smokers and their physicians to make informed decisions. The findings will also be relevant to pharmaceutical policy and other policy decisions regarding the management of smoking in Australia.

Seeding success: identifying factors that contribute to positive early childhood health and development in Aboriginal children

Professor Louisa Jorm, University of New South Wales, and Dr Kathleen Falster, Australian National University

Australian Aboriginal children are more likely than non-Aboriginal children to have markers of developmental vulnerability at school entry, tracking through to poor school outcomes and disadvantage in later life. The Seeding Success study aims to identify key drivers of positive early childhood development in Aboriginal children, and supportive features of local communities and early childhood service provision. The study includes an almost complete population cohort of children (N=154,936) who started school in New South Wales (NSW) in 2009 or 2012, and were born in NSW, identified by linking Australian Early Development Census data to perinatal and birth registration datasets. Early childhood health and development trajectories are being constructed via linkage to administrative datasets relating to birth outcomes, congenital conditions, hospital admissions, emergency department presentations, use of mental health services, school enrolments and contact with child protection and out-of-home care services. Analyses now in progress, applying multilevel modelling techniques, are investigating the following in relation to early childhood development outcomes in Aboriginal compared with non-Aboriginal children: maternal and perinatal factors; preschool attendance; and age at school entry. In partnership with policy agencies, we will use the linked data to assess the impact of two current NSW government programs that aim to address early childhood disadvantage (NSW Aboriginal Maternal and Infant Health Service and the Brighter Futures program). These analyses will use propensity matching methods and interrupted time series analysis to identify comparison areas and groups and to compare outcomes between areas and groups. The findings will be relevant to those working in the health, early childhood, community services and education sectors.

Validation and Impact of the Four Hour Rule/NEAT in the Emergency Department: A Large Data Linkage Study

Dr Roberto Forero, Simpson Centre for Health Services Research, SWS Clinical School, UNSW

Access Block and Emergency Department (ED) overcrowding are the most serious issues confronting EDs in the developed world, which compromise quality and timeliness of patient care. The National Emergency Access Target (NEAT) required that most patients presenting to ED will be discharged; admitted to hospital or transferred to another facility for treatment; within four hours, when it is clinically appropriate to do so. The purpose of this project therefore was to assess the impact of the Four Hour NEAT policy on patients; and how effective the hospital has been in reducing access block and ED overcrowding before and after its implementation. The other aims of the project included to develop a long term partnership to reduce the harmful effects of access block and ED overcrowding on patients, and promote evidence based policy interventions for future research at the national and international level.

This project used data linkage to explore the incidence rates of ED presentations, demographic characteristics, procedures and other patterns of care of patients admitted through ED before, during and after the policy implementation of the Four Hour Rule/NEAT was used. A cohort of presenting patients in the NSW Emergency Department Data Collection between 2005 and 2013 at one of the six NSW hospitals (Westmead, John Hunter, Liverpool, Royal North Shore, Prince of Wales and Mount Druitt), and/or all presenting patients in the ACT Emergency Department Data Collection between 2005 and 2013 at Canberra Hospital or Calvary Hospital, was linked by the CHeReL to the NSW Admitted Patient Data Collection, NSW Registry of Births Deaths and Marriages death registrations, Cause of Death Unit Record File, ACT Admitted Patient Collection, and both NSW and ACT Ambulance datasets.

This research will provide evidence to generalise interventions across hospitals for addressing problems associated with deleterious delays in relation to hospital overcrowding. Through this study a framework for improving ED performance will be developed together with a long term strategy for maintaining and sustaining improvements in the system. The study will introduce complex system science methods that will guide the implementation of strategies for managing ongoing service improvement interventions at the clinical team, hospital, regional and national levels.

Establishing integrated data for stroke to enable comprehensive monitoring of care and patient outcomes to provide evidence for clinical practice improvement

Associate Professor Dominique Cadilhac, School of Clinical Sciences, Monash University

In Australia about 50,000 people suffer a stroke each year. Research has been used to show that adherence to evidence based clinical guidelines, such as admission to a stroke unit, can reduce in-hospital mortality and improve outcomes. However, evidence based care is not always provided in clinical practice. Such discrepancies in care quality are concerning given that variation in patient management has been shown to adversely affect health outcomes and lead to ineffective use of health care resources, including increases in hospital readmissions and Emergency Department presentations.

The Australian Stroke Clinical Registry (AuSCR) is a national clinical quality registry of patients with acute stroke and is a collaborative national effort to monitor, promote and improve the quality of acute stroke care. As part of an NHMRC partnership project with the Florey Institute of Neuroscience and Mental Health (AuSCR Data Custodian), the National Stroke Foundation and Queensland Health called Stroke 123 (GNT1034415), investigators of this study aimed to determine the value of linked data in describing variations in the quality of acute stroke care, and describe any variations in costs which may be related to the quality of care. In order to assess the quality of stroke information by comparing AuSCR data with hospital and emergency admission data, the CHeReL linked the AuSCR data collection with the NSW Admitted Patient Data Collection and NSW Emergency Department Data Collection. The respective data linkage agencies of Queensland, Western Australia and Victoria have also linked AuSCR data to hospital and emergency data collections and a project specific unique national linkage key will be used to merge these datasets. This study will be the first to achieve national cross-jurisdictional data linkage between a clinical quality registry that is not managed by government and hospital health information data in Australia.

Data linkage value adds to AuSCR because it is a minimum dataset of national indicators prioritised for stroke and when the datasets are merged can provide more comprehensive data for routinely monitoring acute stroke care in hospitals whereby the continuum of stroke care across multiple sectors can be tracked. This is particularly important for patients with stroke since multiple interactions across a range of healthcare facilities and jurisdictions are common.

This study also provides the evidence for the feasibility of capturing and using a range of data for other chronic complex conditions where multiple interactions with the health system, between and within different jurisdictions, are typical for each patient. The data linkage and quality improvement frameworks developed as a consequence of this work have the potential to improve the quality of care and outcomes for a range of chronic diseases, not just stroke.

Detecting fatal and non-fatal suicide clusters

Dr Matthew Spittal, Centre for Mental Health, Melbourne School of Population and Global Health, University of Melbourne

Suicidal behaviour is a major health problem, especially among young people. A suicide cluster can be defined as a group of suicides or attempted suicides that occur closer together in time and space than would normally be expected on the basis of statistical prediction or community expectation. Relatively little research has been undertaken into suicide clusters, and the underlying mechanisms are not clear, however it has been proposed that they may be due to a process of ‘contagion’, whereby one person's suicidal behaviour influences another person's, sometimes with fatal consequences.

This record linkage study combined individual-level data on suicide attempts with individual-level data on completed suicides. The cohort comprised individuals admitted to hospital for deliberate self-harm or who died as a result of deliberate self-harm. This cohort was linked by the CHeReL to the NSW Admitted Patient Data Collection, NSW Registry of Births Deaths and Marriages death registrations and Cause of Death Unit Record File. After extracting all participants hospital admission and death records investigators attempted to: identify suicide clusters (including completed suicides and suicide attempts); identify factors which increase the likelihood of given completed suicides and suicide attempts being part of a cluster; and use this information to construct and assess a risk calculator that can be used prospectively to estimate the probability of a given suicidal event.

This study considers completed and attempted suicide in tandem, which has not been done before, and seeks to identify event-level, individual-level and area-level factors that predict the occurrence of a cluster. Whilst community resources for responding to suicide clusters are useful, one of the main barriers for their uptake is uncertainty about when a cluster exists. This study aims to provide better information than currently exists for identifying emerging suicide clusters, defined in terms of both completed suicides and attempted suicides.

Infections in childhood: risk factors, sequelae and health system burden: A NSW population-based data linkage study

Professor Louisa Jorm, Centre for Big Data Research in Health, University of New South Wales

This study uses linked data to examine infections in childhood, their risk factors, sequelae and health system burden. The infections of interest include pertussis, influenza, invasive pneumococcal disease and meningococcal disease; sequelae of specific interest include seizure disorders and other neurological conditions, asthma, chronic lung disease and other respiratory conditions, otitis media, chronic gastrointestinal disease and chronic urinary tract infections. The use of linked data sets assists to examine the reporting of the conditions, to investigate the roles of maternal, child, geographic and health service factors in influencing susceptibility and short- and long-term outcomes. This study will also estimate the health system burden associated with childhood infections, including financial costs and bed days.

The study population includes all children with a birth record (live births only) in the NSW Perinatal Data Collection between January 1994 and December 2012. This cohort was linked by the CHeReL to other records in the NSW Perinatal Data Collection, NSW Notifiable Conditions Information Management System, NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Registry of Births Deaths and Marriages death registrations, ABS mortality data collection, ABS Perinatal Deaths data and NSW Register of Congenital Conditions.

Socioeconomic status, depression and risk of stroke: analysis of 750,000 participants from two prospective cohort studies

Dr Caroline A Jackson, School of Population Health, University of Queensland and Usher Institute for Population Health Sciences and Informatics, University of Edinburgh

By 2020, cardiovascular disease and major depressive disorders are projected to be the two leading causes of morbidity worldwide. Stroke is the third leading cause of morbidity and mortality worldwide. Incidence of both stroke and depression have been found to be higher among lower socioeconomic groups in Australia and elsewhere, highlighting the excess burden of disability within these less advantaged and more vulnerable groups. Conventional vascular risk factors, such as hypertension and smoking are estimated to account for 60-80% of ischaemic stroke cases. The role of other potential risk factors in explaining the remaining 20-40% of stroke cases remains unclear. Two such factors, depression and socioeconomic status (SES), are known to increase stroke risk, but it is unclear whether they are independently associated with stroke risk. Also, it is unclear whether there are age and gender differences in the association between depression and stroke. Furthermore, the mechanisms underlying the association between SES and stroke, and the extent to which depression contributes to the causal pathway, remain poorly understood.

This study obtained data from two contemporaneous population-based cohort studies that were set up to investigate the causes and consequences of disease (UK Biobank and NSW 45 and Up Study). Both cohorts follow participants for major health outcomes via data linkage to hospital admission records and death records. The CHeReL linked the 45 and Up Study to the NSW Admitted Patient Data Collection, ACT Admitted Patient Collection, NSW Registry of Births Deaths and Marriages death registrations and Cause of Death Unit Record File. These data were then used to explore age and gender differences in the associations between each of SES and depression, and stroke, and to investigate hypothetical pathways through which SES may operate to increase stroke risk, with examination of the potential contributory role of depression.

Understanding the impact of social, economic and environmental factors (SEEF) on the morbidity and mortality of Australians in mid-later life: what are the opportunities for prevention?

Professor Adrian Bauman, Prevention Research Collaboration, University of Sydney

The SEEF Study is a sub-study of the 45 and Up Study exploring in detail the relationship between the economic, geographic, social and lifestyle factors such as mental health, smoking, physical activity and obesity on health service use, morbidity and mortality. The goal was to undertake integrated analyses of the impact of social, economic and environmental factors on the health of Australians in mid to later life in order to identify critical intervention points for preventing disease and ameliorating disadvantage, ill health and morbidity in older Australians.

The SEEF study added value to the existing 45 and Up cohort of 267,000 people by collecting additional self-reported information from a sub-sample of 60,404 adults to enable detailed investigation of social, economic and environmental factors. The CHeReL linked SEEF Study data and the baseline 45 and Up Study to the NSW Admitted Patients Data Collection, NSW Emergency Department Data Collection, NSW Central Cancer Registry, NSW Registry of Births Deaths and Marriages death registrations and Cause of Death Unit Record File. Medicare Benefits Scheme and Pharmaceutical Benefits Scheme data was linked through the 45 and Up Study by the Sax Institute.

SEEF subprojects together investigated air pollution, traffic exposures, social interaction, medication use, emergency department visits, hospitalisation and deaths, providing data on the effects of social, economic and environmental factors on health outcomes that are specific to the Australian context, adding to the knowledge base internationally. In addition, the SEEF Study aimed to build a simulation model that would allow the prediction, over the next 30 years, of the trajectory of the NSW population over age 45 in terms of health conditions, health services use and health care expenditures. This model would then be used to study the impact of reducing socioeconomic and geographic inequalities and a variety of prevention strategies on the incidence and prevalence of chronic conditions (such as cardiovascular disease, diabetes and stroke), of their distribution and the associated health service use and expenditure.

The Sax Institute and 45 and Up Study were involved in supporting the SEEF Study.

Health and educational outcomes of high risk newborn infants

Dr Ju lee Oei, Department of Newborn Care, Royal Hospital for Women, Randwick, NSW

Newborns requiring intensive care are at significantly higher risk of adverse neurodevelopmental outcome. The cause of these problems may be specific to their circumstances, for instance, prematurity, intraventricular haemorrhage or congenital abnormalities. They may also be a consequence of very necessary treatment e.g. surgery or steroids for lung disease. No one can deny that NICU (neonatal intensive care unit) care is vital for the optimum survival of many high risk infants. Unfortunately, studies, particularly those focusing on extremely premature and low birth weight infants, show that neurodevelopmental outcome, when examined in controlled, clinical settings, are less favourable than those of normal full term healthy infants. Whether these studies translate into real life e.g. during school performance or whether poor development affects all NICU survivors, per se, is unknown. Accordingly, this study aimed to determine outcomes of high risk infants based on whether they are admitted to NICU or not.

The CHeReL linked a cohort from the NSW Perinatal Data Collection and the Neonatal Intensive Care Units' Data Collection with the NSW Registry of Births Deaths and Marriages  death registrations, NSW Admitted Patient Data Collection, ABS Mortality data, NSW Central Cancer Registry, The Cerebral Palsy Registry and National Assessment Program – Literacy and Numeracy (NAPLAN) data.

The linkage of these databases allowed researchers to identify and quantify risk factors associated with poor educational outcomes of “high risk” children, develop an ongoing model of educational assessment for such survivors until adulthood, and determine the impact of cancer on the survival and education of “high risk” children. The results of this study will provide information on real life function of high risk survivors and provide the means in which to improve their outcomes if necessary.

Factors relating to cancer incidence, care and outcomes in the 45 and Up Study

Professor Karen Canfell, Cancer Research Division, Cancer Council NSW

Large changes to the structure of the Australian population are predicted for the near future such that the number of people aged over 65 will increase by over 75% in the next 20 years. In terms of health, these changes will carry a significant increase in the social and financial burden to the Australian public and the issue of ‘healthy aging’ will be a prominent concern. There is a lack of large-scale, prospective data on risk factors for cancer in Australia. Importantly, age is the largest risk factor for most cancer types, with more than half of all cancers diagnosed in NSW occurring in individuals over the age of 65. Thus, the focus on older individuals in the 45 and Up Study cohort was particularly suited to examining risk factors for cancer incidence, care and outcomes.

This study aimed to quantify the association of cancer incidence, mortality, and all-cause mortality with known and emerging lifestyle, socio-demographic, and health-related cancer risk factors; and identify factors and issues in cancer care with relation to health services use.

The 45 and Up Study was linked by the CHeReL to the NSW Central Cancer Registry, NSW Register of Births, Deaths and Marriages death registrations, Cause of Death Unit Record File, NSW Admitted Patient Data Collection, and NSW Emergency Department Data Collection, Medicare Benefits Schedule and Pharmaceutical Benefits Scheme was linked by the Sax Institute through the 45 and Up Study. The 45 and Up Study provided a unique opportunity for expanding on what is known in Australia about risk factors, health outcomes, and health services use in relation to cancer. Findings from this study could be used to guide the development of health policy in Australia to address cancer risk factors.

The impact of dementia on access to and outcomes from rehabilitation following lower limb fracture-related hospitalisations: Study 1

A/Prof Rebecca Mitchell, Australian Institute of Health Innovation, Macquarie University

Falls and fall-related injury in older people continue to challenge health and social care systems on a worldwide basis. Dementia has been consistently shown to increase risk of falls, with rates that are double that of cognitively intact older people. Older people with dementia have a four-fold increased risk of hip fracture and a three-fold increased risk of 6-month mortality following a fracture when compared to older people without this condition. Relatively little is known about the care provided for patients with dementia who are admitted to hospital following a fracture but there is a perception that access to rehabilitation is often restricted due to a belief that the presence of dementia has a direct impact on their ability to engage and benefit from a structured approach to rehabilitation. Functional recovery of demented patients with hip fractures can be as good as those without dementia and discharging patients to rehabilitation facilities results in better functional outcomes compared to those discharged to long-term residential facilities. Whilst true that dementia will potentially have an impact on rehabilitation goals, there is evidence that a dementia specific approach to care can be effective in improving daily function for the person with dementia and a sense of competence for the carer.

Access to, and outcomes from, rehabilitation for lower limb injuries in older people with and without dementia in NSW are not clear. An accurate snapshot of the incidence and characteristics of rehabilitation and related follow-up care in NSW is needed for individuals sustaining lower limb injuries, particularly severe injuries such as fractures, and the determination of whether use of rehabilitation differs for those individuals with and without dementia needs to be explored.

This retrospective study examined access to and outcomes from rehabilitation following a fracture in older people with dementia. The cohort was taken from the NSW Sub-acute Non-acute Patient (SNAP) data collection for individuals (aged 50 years and older) with lower limb injuries who were hospitalised between 2003 and 2013. The CHeReL linked these data with the NSW Admitted Patient Data Collection and NSW Registry of Births, Deaths and Marriages death registrations. Overall, this research will better inform treatment practices, health system planning and resource needs and future research priorities.

Incidence and burden of childhood injury in Australia

A/Professor Rebecca Mitchell, Australian Institute of Health Innovation, Macquarie University

The total burden and causes of paediatric injury in Australia by injury severity are not clear, and a more accurate “snapshot” of the incidence and characteristics of severe injury and related follow-up care in Australian children is especially needed. Several factors can influence survival following injury, including type and level of trauma centre, and these factors need to be examined so they can be taken into account in the provision and coordination of trauma care for injured children. Accordingly, this study aimed to estimate and describe the burden of hospitalised childhood injury and related follow-up care in Australia and determine the severity of the injuries experienced and factors influencing survival.

In order to fulfil this objective, the study aimed to determine the distribution of injury severity for hospitalised childhood injury in Australia; describe the number, demographic characteristics, injury characteristics and outcomes of children who were hospitalised as a result of injury in Australia; identify any temporal changes in the characteristics or severity of childhood injury resulting in hospitalisation; and determine the type of hospitals where children with severe injury are treated and the incidence of transfer to other hospitals for higher level of care.

Linked personal identifiers from the cohort were extracted by the CHeReL from the NSW Admitted Patient Data Collection and ACT Admitted Patient Collection to facilitate linkage by the AIHW. Data from the selected cohort was mapped to the format used by the National Hospital Morbidity Database and then linked to the National Death Index by AIHW in order to identify any deaths that occurred after the child was released from hospital.

This research will better inform injury prevention strategies, research priorities, trauma system design, health service planning and resource needs for injured children.

EXTending the ANZDATA Registry by linking to administrative datasets (EXTANZ)

Associate Professor Martin Gallagher, Renal Policy Program, The George Institute for Global Health

The burden of end stage kidney disease (ESKD) is falling upon increasing numbers of patients and families in Australia and despite much of the increasing financial cost being borne by the wider Australian community, outcomes for these patients remain poor. The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) has made invaluable contributions to knowledge of the patient journey after commencement of renal replacement therapy. The registry, however, is limited in its information around health service utilisation, such as accessing health care providers, hospitalisations, procedures and medications. The EXTANZ project therefore aimed to expand the ANZDATA Registry dataset to include additional information on outpatient medical consultations, outpatient medicine usage and hospitalisation events.

Cohort data for incident maintenance renal replacement therapy patients that commenced treatment at Concord Repatriation General Hospital, Royal Prince Alfred Hospital, Royal North Shore Hospital or Sir Charles Gardiner Hospital between 2011- 2012 were linked by the CHeReL to the NSW Admitted Patient Data Collection and NSW Registry of Births, Deaths & Marriages death registrations for NSW patients. Patients who were resident within WA were also linked to the WA hospital morbidity data collection and WA Mortality Dataset by the WA Data Linkage Service, and to the Medicare Benefits Schedule and Pharmaceutical Benefits Scheme by the Department of Human Services. 

Study researchers evaluated outcomes of mortality, health service utilisation, types of renal replacement therapy, medication types and specialist outpatient services, with the findings used to understand the impact of these additional healthcare activities upon the outcomes of patients receiving dialysis and transplantation.

The resulting dataset of this project provided researchers with additional information on the provision of health services and medications to kidney disease patients. Such information is likely to be shaping the poor patient outcomes, and once known, will be useful to inform government policy and improve public practice in coping with the disease.

45 and Up Study Cohort Management Linkage Project

Ms Margo Barr, Sax Institute

The Sax Institute’s 45 and Up Study, the largest cohort study ever conducted in Australia, is designed to help determine the community’s future health requirements and give government reliable evidence to underpin sustainable policy. Over 267,000 NSW residents 45 years and over were recruited to the 45 and Up Study and have provided information on their health, lifestyle and demographic characteristics, as well as consent to be contacted for further research and to link this data with other administrative data collections.

Ongoing follow-up of any longitudinal study is challenging particularly as the cohort ages and more serious disease and deaths occur. Therefore for ongoing cohort management of the 45 and Up Study cohort, information has been included in the CHeReL Master Linkage Key (MLK) and linked to other health records. Linkage of the following datasets was facilitated by the CHeReL: Death data (NSW Registry of Births Deaths and Marriages death registrations and Cause of Death Unit Record File); Hospitalisation data (NSW Admitted Patient Data Collection); and Cancer notifications and deaths (NSW Central Cancer Registry).

The aim of the 45 and Up Study Cohort Management Project is to link the 45 and Up Study cohort to death data, hospitalisation data and cancer notifications to identify individuals who should not be followed up, to report on follow up non-response, and to validate questionnaire results. The expected benefits from the ongoing linkage to the death data, hospitalisation data and cancer notification datasets, as close to real time as possible, will improve cohort management (deaths and understanding nonresponse) and the quality of the data overall (by comparing questionnaire responses with administrative data).

Observational Australian Study investigating the epidemiology, outcomes and management of non-traumatic subarachnoid haemorrhage (OASIS study)

Associate Professor John Worthington, Liverpool Health Service, University of New South Wales

Patients are often assessed and then discharged from a hospital Emergency Department (ED) without being admitted to a hospital ward. While the majority of these decisions are appropriate, some patients re-present within a short period of time and require hospital treatment. In some cases, these re-presentations indicate the patient was initially misdiagnosed and the opportunity to provide timely treatment to produce more favourable health outcomes may have been missed.

Non-traumatic subarachnoid haemorrhage accounts for 5% of all strokes yet is associated with the greatest number of quality-of-life-years-lost of all stroke sub-types (fatality is 30-50% within 30-days). Urgent, definitive treatment of causative arterial aneurysms greatly reduces the risk of catastrophic re-bleeding in the days after a first subarachnoid bleed.  While many patients with subarachnoid haemorrhage are critically ill at the time of presentation, a sizeable proportion are ambulant and conscious and present with symptoms shared with less serious conditions that can be safely managed in a community setting; such cases may be challenging to correctly diagnose.

Using data-linkage, this study examines the risk of hospital admission or death due to subarachnoid haemorrhage up to 30-days after discharge from ED, and aims to benchmark the rate of misdiagnosis to other acute conditions which also have serious consequences and risk being misdiagnosed because symptoms are shared with less serious illnesses. Data from the NSW Emergency Department Data Collection (presentations) and NSW Admitted Patient Data Collection (hospital admissions) from 1 January 2005 onwards were linked by the CHeReL to subsequent hospital admissions, ED presentations, and NSW Registry of Births Deaths death registrations and ABS mortality data to determine outcomes such as case-fatality, fatality up to one-year and beyond, hospital re-admission and time spent in hospital after a subarachnoid haemorrhage.  

The results of this study are expected to highlight potential deficiencies in current patient care, with a particular emphasis on subarachnoid haemorrhage, the most fatal and devastating form of stroke. By identifying predictors of misdiagnosed subarachnoid haemorrhage, the study will inform clinical education and identify system, patient and disease factors that may be translated into clinical and system redesign to remedy gaps in current care, improving patient safety and avoid delays in definitive diagnosis and treatment. The study is currently underway.

NSW Child Development Study: Record Linkage 2 – Feasibility Study

Prof Vaughan Carr

The New South Wales Child Development Study (NSW-CDS) is a longitudinal investigation of a population cohort of ~87,000 children that aims to identify childhood vulnerability and protective factors which predict a variety of later health and social outcomes in adolescence and young adulthood. This feasibility study tested the record linkage capacity of the Middle Childhood Survey, a self-report questionnaire measure of children's mental health and well-being completed by 645 ~11-year-old children in 11 NSW primary schools during 2014. The Middle Childhood Survey was linked to perinatal records and birth registration records held in the Master Linkage Key, and an external data collection of education data, with mothers and fathers of the children identified for linkage via the birth registrations.

This feasibility study was critical to the success of the population linkage study conducted in 2016, in which the records obtained in the population administration of the Middle Childhood Survey will be linked as part of the NSW Child Development Study cohort (~N=87,000).

Trends, health service use and complications following hospitalisation for low back pain

A/Professor Manuela Ferreira, Sydney Medical School and The George Institute for Global Health

In 2010-2011 alone, approximately 500,000 hospitalisations involving surgical procedures were performed in Australians with musculoskeletal disorders, main diagnoses being low back pain and arthritis. However, this strategy is expensive, exposes patients to greater risks and conflicts with the best available evidence. The aim of this study is to better understand the outcomes and variations of hospitalisation and emergency department presentation for low back pain. Patients admitted to hospitals and emergency departments with low back pain were identified using specific codes from the NSW Admitted Patient Data Collection (APDC)and NSW Emergency Department Data Collection (EDDC).  Linked records from the APDC, EDDC and NSW RBDM death registrations for this cohort were extracted from the Master Linkage Key by the CHeReL.

Using this linked data researchers are able to look at measures of health care use including length of stay, cost of care, readmission to hospital, use of specialized services such as inpatient rehabilitation and referral to outpatient rehabilitation and admission to nursing homes. Other outcomes like mortality, re-operations, procedural complications and use of health insurance can also be examined.

Opioid Dependence: Candidate Genes and G x E Effects (Comorbidity and Trauma Study – CATS)

Prof Louisa Degenhardt, NHMRC Principal Research Fellow, National Drug and Alcohol Research Centre, University of New South Wales 

The Comorbidity and Trauma Study (CATS) interviewed 1487 opioid-dependent individuals on opioid substitution therapy (OST) and 515 control subjects between 2004 and 2008. Participants completed face-to-face, structured psychiatric interviews that included assessments of drug dependence and childhood trauma, as well as other psychiatric disorders. The aim of this study is to examine causes and predictors of mortality, and patterns of engagement with OST among the CATS cohort.  For this study the CHeReL linked the CATS cohort with the National Death Index, the Pharmaceutical Drugs of Addiction System, the NSW Admitted Patient Data Collection and the NSW Emergency Department Data Collection. The linkage rates were an important part of this study as the CATS data set contained many incomplete identifiers. 

Rehabilitation Outcomes of Patients Admitted After Road Trauma

Miss Lily O’Donoughue Jenkins, Australian National University

This project aims to examine the four varying levels of resources - individual resilience, social networks, primary care and tertiary care - and determine how each level is associated with the rate or risk of cognitive decline. For the first level the aim is to examine inner resources of resilience as well as personal resources that may be associated with resilience, such as diet or exercise, and whether these factors contribute to cognitive decline. The aim of the second level is to examine how individual's social engagement is related to cognitive decline and what specific aspects of social engagement is associated with cognitive decline. The third level aims to analyse the correlation between frequency of primary care use and cognitive decline and analyse the burden cognitive decline has on primary care.

 Analysis will be conducted using variables from the Personality and Total Health (PATH) Through Life project. The use of primary care will be analysed by looking at Medicare records of GP visits that have been linked with PATH data. The aim for the final level is to analyse whether hospitalisation is predictive of, or is correlated, with cognitive decline. The PATH data was linked by the CHeReL to the ACT Admitted Patients Collection and the ACT Emergency Department Data Collection.

Using patient experiences of adverse events to improve health care delivery and practice

Professor Merrilyn Walton, University of Sydney

Knowing how patients experience their health care is fundamental for effective service delivery yet the policies that underpin delivery systems are developed without evidence of patients’ experiences of adverse events while in hospital. This research addresses this significant deficit by undertaking an investigation of the experience of adverse events amongst recently hospitalised patients in New South Wales. The study aims to investigate the experiences of patients who have suffered an adverse event in order to create more effective service and policy responses to adverse events.

This is a mixed methods study involving data linkage between the NSW Admitted Patient Data Collection, Registry of Births Deaths and Marriages death registrations and ABS mortality data collection and the 45 and Up Study via CHeReL. Linked data will be used to identify potential participants in the 45 and Up Study cohort who have been hospitalised during the most recent six months for which data is available. Individuals in the 45 and Up Study who have had a hospitalisation during the most recent six months will receive a study invitation. The respondents will then be divided into two groups: those who experienced an adverse event and those who did not (control group). The survey includes qualitative and quantitative methods. Patient experience of adverse events will be categorised using the WHO International Classification for Patient Safety. Quantitative methods will be used to identify the extent of adverse events experienced by patients as well as isolate common features of that experience.

Rehabilitation Outcomes of Patients Admitted After Road Trauma

Dr Jane Wu and A/Professor Steven Faux, St Vincent's Hospital

The focus of acute trauma care teams is to improve mortality and morbidity. Improved functional outcomes at discharge can only be achieved through early involvement of allied health and rehabilitation services. Although there is a smooth system of transfer to a trauma centre, rehabilitation services in these tertiary hospitals in Sydney currently have little spare capacity to accommodate the significant additional caseload. This then impacts on the progress of these patients as their journey from acute care bed to a rehabilitation bed is delayed. Transferring a patient from a tertiary hospital back to the local rehabilitation facility is often difficult with significant delays which results in acute bed block at the trauma services. There has been no study of access to rehabilitation care for road trauma patients undertaken in Australia previously. Data is needed on the journey of road trauma patients from acute care to rehabilitation care to address several aspects of role of rehabilitation in trauma care. The overall aim of this project is to accurately and reproducibly examine acute care of trauma patients and link this data to the rehabilitation outcomes. It will identify factors that determine functional outcomes and length of stay. For this retrospective study, the CHeReL linked a cohort from the NSW Trauma Registry to the Australasian Rehabilitation Outcomes Centre (AROC) data collection.

Health service utilisation before and after a diagnosis of cancer: a data linkage study using the 45 and Up Study cohort

Ms Deborah Baker, Cancer Institute New South Wales

People diagnosed with cancer will have contact with a wide range of health care services in the time leading up to, and following, their cancer diagnosis. This study aims to quantify health service use in a cohort of people with cancer in NSW, and to describe patterns of use of primary and specialist consultations and diagnostic tests. This information will be used to inform future initiatives to streamline care pathways and improve cancer care services outside of hospital settings.

A cohort of people in the 45 and Up Study and people aged 45 years and above at cancer diagnosis recorded in the NSW Central Cancer Registry between February 2006 and December 2009 was linked by the CHeReL to all other records in the NSW Central Cancer Registry, NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Registry of Births Deaths and Marriages death registrations and ABS morality data collection. Medicare Benefits Schedule treatment data and Pharmaceutical Benefits Schedule cancer-related systemic therapy data were provided via the 45 and Up Study.

The Crystalloid Hydroxy-Ethyl Starch Trial (CHEST) - Health care Utilisation
Professor John Myburgh - The George Institute

This project is a sub-study of the large multi-centre clinical trial – Crystalloid Hydroxy-Ethyl Starch Trial (CHEST)

Patients in intensive care units often need intravenous fluids to increase their blood pressure to acceptable levels or because the doctors treating them feel that the volume of fluid in the blood stream (blood volume) is inadequate. This fluid is given into a vein and is known as fluid resuscitation. The main aim of this project is to determine whether critically ill adults with low blood volume who receive fluid resuscitation with 6% hydroxyethyl starch compared to saline (a salt solution), will have an improved chance of survival and kidney function  90 days later.

CHEST was a prospective, multi-centre, blinded, randomised controlled trial. Each patient was randomised to receive one of the two study fluids for fluid resuscitation. Once treatment was assigned, participants continued to receive either 6% hydroxyethyl strach only or saline only for all fluid resuscitation requirements in intensive care. All participants were followed up at day 28, day 90 and at 6 months after randomisation. After all patients completed the 6 month follow up, data linkage was used to link patients in NSW to health databases in order to obtain information on their use of health services. The CHeReL linked participants enrolled in CHEST in NSW to the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Registry of Births Deaths and Marriages death registrations and ABS mortality data collection.

Developing indicators of cancer progression and recurrence in NSW using NSW Cancer Registry data, Admitted Patients Collection data, Emergency Department data, and MBS and PBS Health Insurance data

Professor David Currow, Cancer Institute NSW

There is strong demand for population-based monitoring data on cancer progression/recurrence to gain early markers of treatment outcomes, but few examples of these data exist world-wide. Because collecting these data from clinical centres is difficult to sustain, data linkage of administrative datasets has been proposed as an alternative strategy for data collection, including linking data from cancer notifications, pathology reports, hospital and radiotherapy records, and health insurance records.

The aims of this study are: 1) To use linked administrative data to develop indicators of the fact and timing of cancer progression/recurrence; 2) To compare the accuracy of these indicators with reported data from a subsample of patients and clinicians; and 3) To investigate how linked data from different sources should be weighted by data source to maximize predictive accuracy.

This study linked a cohort of 45 and Up Study participants who had ever had a diagnosis of cancer (determined via data linkage to the NSW Central Cancer Registry), to other records from the NSW Cancer Registry, NSW Clinical Cancer Registries, NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, Registrar of Birth Deaths and Marriages death registrations, ABS Mortality data collection.  Medicare Benefits Schedule (MBS) treatment and Pharmaceutical Benefits Schedule (PBS) cancer-related systemic therapy data were provided via the 45 and Up Study.

Mapping the outcomes of calls to 'healthdirect Australia'

Professor Louisa Jorm, Centre for Big Data Research in Health, University of New South Wales

Healthdirect Australia provides, through contracted services, a telephone-based health care triage and advice service known as healthdirect Australia. This is a 24 hours a day, 7 days a week nurse triage service. Between 9-13% of callers are directed to attend an emergency department (ED) via private transport, while around 50% are directed to visit a general practitioner (GP) within a specific timeframe. The extent to which patients follow the advice of healthdirect Australia to visit a GP or attend an ED is unknown. Linkage of healthdirect Australia operational call data with routinely collected data about subsequent service use and outcomes offers the potential to evaluate the quality of these services on a whole-of-population basis, and in a timely and efficient way.

This observational cohort study seeks to address four main objectives: 1) Quantify the extent to which healthdirect Australia advice is being followed; 2) Describe patient outcomes (including ED presentations, hospital admissions, deaths) following calls to healthdirect Australia; 3) Identify the characteristics of patients (including demographics, geography, diagnoses) who are less likely to follow advice and/or who have unfavourable outcomes; and 4) Explore how features of healthdirect Australia service provision (including protocols used, who provided the advice, time of call) relate to 1) to 3). The study population includes all NSW and ACT residents who were the subject of calls to healthdirect Australia between 1 July 2008 and 31 December 2012.  This cohort was linked by CHeReL to the NSW Admitted Patient Data Collection, ACT Admitted Patient Collection, NSW Emergency Department Data Collection, ACT Emergency Department Information System, NSW Registry of Births Deaths and Marriages death registrations, the 45 and Up Study data collection and ABS Mortality data collection. Medicare Benefits Schedule treatment data and Pharmaceutical Benefits Schedule cancer-related systemic therapy data were provided via the 45 and Up Study.

Epidemiology and Management of Solid Organ Injury (SOI) (Liver, Spleen, Kidney, Pancreas) in Individuals Aged 0-25 in NSW Remote, Regional and Metropolitan Non-Trauma Centres and Metropolitan Trauma Centres, Adult and Paediatric

Dr Susan Adams, Sydney Children’s Hospital

Injury is the leading cause of death in children over the age of 1 and continues up to the age of 40. Prevention remains key to reducing paediatric trauma deaths. In order to devise relevant preventative strategies, an understanding of the epidemiology is essential. Given that injuries will still occur, effort is also needed in the “control” of injury – that is improving the patient outcome once injury has occurred. This requires focus on the quality of care from the pre-hospital setting through a local or regional hospital and on to the paediatric trauma centre (PTC), to prevent injury mortality and reduce morbidity.

This project aims to:

  • To describe the pattern of Solid Organ Injury (SOI) across NSW in children and young people by geographical region, gender, age group, external cause, place of occurrence, ethnicity and indigenous status
  • To determine if the management of solid organ injury (spleen, liver, kidney, pancreas) between the ages of 0-25 differs according to the designation of the hospital to which the patient is admitted and managed.

A cohort of patients from the NSW Admitted Patient Data Collection with a trauma admission aged 0-25 at the time of admission with a diagnosis for solid organ injury for the period 1 July 2000 and 30 September 2011 was linked to other records from the NSW Admitted Patient Data Collection, NSW Registry of Births Deaths and Marriages death registrations and ABS Mortality Data Collection.

Long-term outcomes of testicular and germ cell tumour patients in Western Sydney (GCT Outcomes Study)

A/Prof Howard Gurney, Westmead Hospital

There is little Australian data examining the long-term outcomes in patients with testicular and germ cell tumours (GCT) and it is well established that treatment of these cancers within a centre of excellence is associated with better survival. Testicular cancer patients are commonly young individuals who require multiple treatment modalities, including surgery, chemotherapy and radiotherapy, with a curative intent. Examining the survival outcomes, prognostic factors, patterns of care, long-term toxicity and survivorship issues in this group of individuals within this major cancer network will be valuable for international comparison and to provide a benchmark for other Australian centres.

The primary objective of the study is to evaluate the long-term outcomes of testicular and GCT patients, including overall survival and long-term toxicity, such as second malignancy, cardiovascular events and infertility. Secondary study objectives include assessing patterns of care, patterns of relapse including prognostic factors and relapse-free survival, progression-free survival after treatment, acute and other long-term toxicity of treatment, factors that correlate with specific long-term treatment adverse events and survivorship issues. This is an observational clinical study of patients with testicular and germ cell cancers diagnosed and/or treated between the 1st January 1990 and 31st December 2010 in the Sydney West Cancer Network. A retrospective analysis of the GCT Outcomes Study Patient Information data was conducted via data linkage to the NSW Registry of Births Deaths and Marriages death registrations, ABS Mortality data collection and NSW Cancer Central Registry.

Hip arthroscopic surgery rates in New South Wales

Dr Francis Connon, NSW Health

The precise indications for hip arthroscopic surgery are not yet clear. The surgery is commonly used for conditions such as femoro-acetabular impingement and labral tears, but the exact role is still not completely established. This project seeks to determine practice variation with regards to arthroscopic hip surgery and the number of arthroscopies performed in each financial year over the study period. Data will be analysed with regards to: 1) comparison with growth in the state population in that period; 2) comparison between arthroscopy rates in public and private settings; 3) complication rates based on in-hospital complications recorded and readmissions data; and 4) comparison between arthroscopy numbers performed in NSW and those performed in Victoria (using data already obtained by a separate group of investigators).

The project is a retrospective observational cohort study reviewing the number of operations performed and comparing: year by year change, variation by postcode, variation according to public vs. private hospitalisation. The study will also review the associated complication rates for inpatients, those requiring increased length of stay, and those requiring readmission within 90 days. A cohort of patients aged over 18 years old at admission who were discharged following hip arthroscopic surgery in NSW from July 2000 to June 2014 were linked to the NSW Admitted Patient Data Collection, NSW Registry of Births Deaths and Marriages death registrations, ABS Mortality data collection.

Birthplace in Australia

Professor Caroline Homer, University of Technology, Sydney

The places of birth available to women in Australia are standard hospital labour wards, birth centres attached to larger obstetric units, stand-alone midwifery units (geographically separate from the hospital labour ward) and birth at home.  More than 7,500 babies are born outside standard labour wards in Australia each year. However, there is limited evidence for the safety of these alternative settings, and significant concerns have been raised about their safety particularly for babies. This study, the first study of its kind in Australia, will provide the evidence required by policy makers and service providers. The study will use routinely collected data from various Australian jurisdictions to investigate the impact of place of birth on neonatal and maternal outcomes.

The primary aim of this project is to compare neonatal morbidity and mortality associated with births that at the onset of labour are planned to be in one of three places - at home, in a birth centre or in a standard hospital labour ward. The secondary aims are: (1) to compare these groups on outcomes of interest (interventions during labour, maternal morbidity and mortality); (2) to explore outcomes for women and babies who planned to give birth at home or in a birth centre but required transfer to a higher level service during or after labour; and (3) to undertake a cost analysis of the three different sites for birth for both the birth process and the readmission costs.

This is a population-based cohort study using routinely collected linked data. Births were eligible for this study if: (a) they occurred between January 1st 2000 and December 31st 2012 as recorded in the NSW Perinatal Data Collection; and (b) woman who gave birth to a singleton baby in the cephalic presentation. In NSW, data from the NSW Perinatal Data Collection was linked to NSW Admitted Patient Data Collection, ACT Admitted Patient Data Collection, NSW Registrar of Births Deaths and Marriages death registration, and ABS mortality data collection.  

Linkage of the Australian Childhood Immunisation Register (ACIR) and State-Based Registers to Evaluate and Inform Australia’s Immunisation Program

Dr Heather Gidding, University of New South Wales, in collaboration with researchers from the Telethon Kids Institute led by Dr Hannah Moore

To optimise the health and cost benefits of Australia’s immunisation program, accurate data are required about how well the program is performing. Currently, this information is derived from stand-alone databases such as the Australian Childhood Immunisation Register (ACIR) and compared to separate databases about the occurrence of vaccine preventable diseases. While analysing these datasets in isolation is useful, their linkage would allow more accurate and detailed studies on the relationship between vaccination uptake, timeliness of vaccination, and development of disease, particularly in specific risk populations who may experience a higher burden of infection.

This project aims to:

1) Measure vaccine uptake and timeliness of childhood vaccinations at a population-level, particularly in at-risk populations (such as Aboriginal children and other groups targeted by special vaccination programs), and identify factors associated with vaccine uptake and timeliness.

2) Calculate the direct and indirect effectiveness of currently available childhood vaccinations at a population level and in at-risk populations, identify factors associated with vaccine effectiveness, and compare estimates over time and between NSW and WA.

3) Inform the development of Australia’s data linkage infrastructure through a Proof of Concept Collaboration with the Population Health Research Network (PHRN).

This is a retrospective population-based cohort study of live births from 1996 to 2012, recorded on the Registry of Births in either WA or NSW. In NSW this cohort was linked by the CHeReL to the NSW Perinatal Data Collection, NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection and NSW Notifiable Conditions Information Management System. AIHW linked the cohort to the Australian Childhood Immunisation Register and the National Death Index.

Injury-related hospitalisations in people with dementia - causes, consequences and costs

Dr Lara Harvey, Neuroscience Research Australia

People with dementia have been shown to have much higher hospitalisation rates than those without dementia.  However, no in-depth examination has been conducted that has examined all injuries by injury mechanism and whether dementia sufferers experience a different injury profile compared to individuals without dementia, nor whether health outcomes of individuals with dementia are worse for all types of injuries. This study aims to examine hospitalisations for patients with dementia who were admitted to a NSW hospital for an injury or poisoning during the ten year period 2002 to 2012. The investigators aim to examine the injury and poisoning profile of people with dementia in NSW hospitals and determine if the health outcomes for elderly people admitted to hospital for an injury and poisoning differ between those with and those without dementia. This is a population-based retrospective cohort study of all people aged 50 years and older, resident in NSW, with an admission to hospital between 1 January 2002 to 31 December 2012, and a principal diagnosis of injury. The CHeReL linked records of the NSW Admitted Patients Data Collection with NSW RBDM death registrations and ABS mortality data collection.

This research will provide much needed data on the impact of injury on the person with dementia by providing an in-depth profile of injury related hospitalisation in people with dementia and by exploring the impact of increasing incidence and prevalence of dementia on patterns of injury over time. This information will be used to identify priority areas for research as well as inform and influence policy and planning in this area in NSW and beyond.

A contemporary population study on venous thromboembolism and its short and long-term impact on morbidity and mortality-collected data?

Professor Leonard Kritharides and Dr Austin Ng, Concord Hospital, The University of Sydney

Venous thromboembolic (VTE) disease is a worldwide problem, with acute pulmonary embolism (PE) it’s most severe manifestation. Studies have emerged showing that the increased mortality from an acute PE episode is not confined to the short-term. Long-term outcome studies showed increased 1-year mortality rate after PE may be as high as 25%. Increased long-term risks of recurrent PE, cancer and cardiovascular events have also been reported in patients presenting with acute PE. The investigators of this project believe there is a potentially greater unrecognised community risk associated with increasing use of percutaneous transvenous cardiac procedures and devices implantation.

The aims of the project are to:

  • Investigate the morbidity and mortality outcomes for the study’s single-centre cohort of patients following their confirmed acute PE.
  • Investigate the prevalence of VTE (PE and/or DVT) in the state of NSW and its relationship to specific potential risk factors of interest.
  • Investigate the incidence of non-fatal and fatal index and recurrent VTE according to baseline demographics and a history of: VTE (PE and/or DVT), coronary disease, heart failure, stroke, atrial flutter/fibrillation and malignancy.
  • Investigate the incidence of fatal cardiovascular disease, and hospitalisation for non-fatal coronary disease.

This population linkage study used records from the Concord Hospital Pulmonary Embolism data collection, NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Registry of Births, Deaths and Marriages death registrations and ABS mortality datasets. This study will provide contemporary insights into the outcome of patients with VTE, identify those that are at high risk of death during follow-up, and define the VTE risk of commonly performed invasive cardiac procedures. 

Is an impact of the Stepping On program on falls evident in routinely-collected data?

Dr Serene Paul, The George Institute for Global Health and The University of Sydney

Currently, fall-related injuries in older people are a significant source of morbidity and health expenditure. The Stepping On program has demonstrated effectiveness in reducing falls in community-dwelling older people. The NSW Ministry of Health has committed significant resources to implementing this fall prevention program across the state. Routinely collected data may be able to detect an effect of the Stepping On program rollout on fall-related hospitalisations, including injuries. This study will explore the impact of the Stepping On program on fall rates in NSW using routinely collected data.

This study utilises a stepped wedge study design involving assessment of fall-related hospitalisations (including injuries) at multiple time points to compare fall rates in NSW prior to the introduction of the Stepping On program and following its implementation in each Local Health District. Routinely collected data from the NSW Admitted Patient Data Collection (APDC) from 1 July 2005 to 31 December 2013 has been utilised, with data for 1 January 2014 to 30 June 2015 (to be updated in 2016) allowing comparison for a minimum of three years prior to and following the introduction of the Stepping On program in each Local Health District.

Interval Colorectal Cancer after Colonoscopy in the ACT

Dr Kavitha Subramaniam, The Canberra Hospital

Colorectal cancer (CRC) is a major public concern in Australia. Recent literature suggest that a proportion of patients may develop interval cancer; colorectal cancer after a colonoscopy that is negative for cancer. Based on a recent meta-analysis, approximately 1 in 27 CRCs are interval CRCs (Singh et al, 2014).  There have been a number of clinical, procedural (including quality indicators) and biologic factors that have been identified with risk of developing interval CRC.

This retrospective population-based cohort study aims to determine the rate and the predictors and pathology of interval colorectal cancers in the ACT. Colorectal cancers detected in the ACT from 2001 – 2009 will be determined from the ACT Cancer Registry. All patients with a diagnosis of colorectal cancer from the ACT Registry was linked to the Gastroenterology Endoscopy Database and records corresponding to a colonoscopy have been examined and classified as ‘diagnosis of colorectal cancer made’ or ‘diagnosis of colorectal cancer not made’.     

Reference:

Singh S, Singh PP, Murad MH, Singh H, Samadder NJ. Prevalence, risk factors, and outcomes of interval colorectal cancers: a systematic review and meta-analysis. Am J Gastroenterol 2014; 109(9): 1375-89.

The finance and economics of primary health care

Professor Jane Hall, CHERE, University of Technology Sydney

There has long been interest in how primary care is financed, and how the incentives of different payment mechanisms influence the delivery of services. The effects of single payment mechanisms are reasonably well understood, and health systems around the world are exploring how to use blended payment systems to achieve better outcomes. There is a need to build the sort of evidence that can help develop effective policy in this important sector. This program of research will be conducted by the Centre for Research Excellence in the Finance and Economics of Primary Care.

There are three overarching aims of the program:

1) To evaluate the impact of existing financial incentives and changes in policy settings in Australia’s primary health care system, on access, the subsequent utilisation and cost of health services.

2) To examine how health status, socio-economic resources and other factors such as rural and remote area of residence affect the use of primary health care.

3) To investigate the contribution of primary care to the overall performance of the health care system and the extent to which changes in funding arrangements in primary care impact on the utilisation of services in other sectors of the health system.

The project will consist of prospective and retrospective cohort studies that will link 45 and Up baseline survey data to administrative heath data sets. 45 and Up Study data was linked to the NSW Admitted Patients Data Collection, NSW Emergency Department Data Collection and NSW Registrar of Births Deaths and Marriages - death registrations; and to Medicare data (PBS and MBS). This research will better inform the design of primary care funding mechanisms in the future. Ultimately this could lead to better provision of primary care services, improved patient outcomes, and a more efficient use of health care resources for primary care.

Ongoing data linkage of Health datasets to CrashLink  

Mr Andrew Graham, NSW Centre for Road Safety

This is a population based record linkage study which proposes to link routinely collected state based health data collections (NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW RDBM Death registrations, ABS Death NSW Deaths, ACT Admitted Patient Data Collection and ACT Emergency Department Information System) to the NSW Centre for Road Safety CrashLink system data (NSW crash reports from NSW Police Force). The cohort for this research project is from the NSW CrashLink system and includes all persons injured or killed due to road crashes that occur on NSW classified and local roads from 1 January 2012 for NSW datasets or from July 2004 for ACT datasets.

The findings will enable identification and monitoring of the incidence of crash related serious injuries and augment CRS data to provide a more detailed picture of the outcomes of road traffic crashes. The collective data will enable planning and measurement of key strategic initiatives and road safety campaigns and provide evidence for both current and future policy and funding programs.

Intellectual Disability Mental Health Data Linkage Project

A/Prof Julian Trollor, University of New South Wales

Currently in NSW, there is limited data about people with an intellectual disability (ID) and the health and mental health services used by this population. Data on people with ID is not collected in a structured way that informs service and policy development and delivery. 

This project aims to build an epidemiological profile of the health and mental health of people with ID in NSW by linking the Ageing, Disability & Home Care (ADHC) NSW Department of Family & Community Services Disability Services Minimum Dataset (DS-MDS) with datasets from the NSW Ministry of Health. These are the Admitted Patient Data Collection (APDC) and the Emergency Department Data Collection (EDDC). The project will also link the DS-MDS to the Mortality Data from the ABS and the Register of Births Deaths and Marriages (RBDM). The project will link retrospective data for the period 2005 – 2013. This project intends to incorporate MH-AMB data collection in a future linkage update. The findings will establish an epidemiological profile of people with ID and mental illness, enabling identification and quantification of patterns of service delivery. This will lead to a better understanding of the service pathways engaged by this population between disability and health services. Numerous publications are currently underway.

Changing Patterns in End of Life Care

Mr Christopher McGowan, Silver Chain Group

Health care costs, and particularly, hospital costs are escalating across Australia at a rate disproportionately higher than that explained by the ageing of the population.

The aim of this project is to identify whether patterns in end of life care are changing; that is, is the proportion of costs used in the last years of life increasing as a percentage of whole health care consumption? To do this, the investigators will use linked hospital utilisation and mortality data from various states to better understand changes in end of life care.

It is hoped that this research will assist policy makers and planners to adequately plan for the future.

Mothers and gestation in custody (MAGIC): Data linkage study of birth and neonatal outcomes of women in prison during pregnancy 

Prof Elizabeth Sullivan, University of Technology Sydney and The University of New South Wales

This study aims to assess the effect of incarceration during pregnancy on mothers and their newborn babies. A literature review of studies of pregnancy outcomes in prisoners, mostly from the USA where there is no universal health care, concluded that imprisoned women were less likely to experience poor perinatal outcomes than other disadvantaged women. However in Australia, women's pregnancies may be more adversely affected by incarceration as disparities between health care in and outside prison may not be as great.  

Data linkage was used to investigate this question by comparing imprisonment pregnancy outcomes with four other groups:

  • pregnancies in the same women when not in prison;
  • pregnancies in other women who have spent time in prison when not pregnant
  • pregnancies in ‘high risk’ women who have not spent time in prison (women with a history either of mental illness or substance use during or prior to the pregnancy);
  • a randomly selected 10% sample of non−prisoner pregnancies.

This study used linked records from the NSW Perinatal Data Collection, NSW Register of Congenital Conditions, NSW Admitted Patient Data Collection, Pharmaceutical Drugs of Addiction System and Offender Information Management System.

Chronic Disease Management Program (CDMP)(formerly 'State-wide Evaluation of the NSW Health Connecting Care Program')

Dr Anne-Marie Feyer, The George Institute for Global Health

The NSW Health Connecting Care Program aims to deliver more effective care and support to people over the age of 16 years who are at high risk of being admitted to hospital due to their chronic conditions which are frequently exacerbated by social and economic circumstances. Using routinely collected health service data at NSW Health (NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Registry of Births, Deaths and Marriages), health service use will be examined among patients enrolled in the Connecting Care Program and compared to those not in the Connecting Care Program. Findings of this study will contribute to decisions about the future of the Connecting Care Program and public funding decisions around chronic disease management in general.

Analysing the trends of bladder cancer in Australia using CHeReL record linkage

Dr Weranja Ranasinghe, University of Newcastle

Carcinoma in situ (CIS) of the Bladder, benign bladder neoplasms (BBN) and neoplasms of uncertain or unknown behaviour of the bladder are not notifiable diseases in Australia and therefore there are no data on incidence available for these three groups. An analysis of yearly hospitalisation data held by the Australian Institute of Health and Welfare (AIHW) indicated that the rates of BBN mirrored those of carcinoma of the bladder, and stayed stable over the period of analysis (1993-2006). However, the CIS rates unexpectedly doubled annually from 2001 onwards. This study aims to investigate this further by examining data from the NSW Admitted Patient Data Collection to determine whether the observed increases in rates in CIS in AIHW data represent a true increase, an artefact due to multiple hospital admissions of the same patients, or a diagnostic bias secondary to increasing cystoscopy rates.

The utilisation of medications during pregnancy and the associated health outcomes

Dr Alys Havard, The University of Western Sydney

This study aims to measure the extent to which medications are used prior to and during pregnancy and the associated health outcomes for both the mother and child. We will also examine the extent to which utilisation has changed in response to policy reforms, and whether differences in utilisation exist between sub-populations.

This is a large population-based cohort study, comprising all women who gave birth in NSW in the period 2003-2010, later updated to include births in 2011-2014. It uses Pharmaceutical Benefits Scheme data linked to state-based perinatal, hospitalisation, emergency department, death and birth defect records. The Australian Institute of Health and Welfare will perform the linkage of PBS records, while other records relating to NSW-based participants will be linked by the Centre for Health Record Linkage.

Our findings regarding the safety of medications will be important for informing guidelines regarding the prescription of these agents during pregnancy. Our findings regarding the utilisation of medications prior to and during pregnancy, as well as our evaluation of policy reforms occurring over the last decade, will guide policy decisions regarding the extent to which medication use prior to and during pregnancy should be encouraged or discouraged, and how this might be achieved, particularly for Indigenous and other disadvantaged mothers.

Mailed feedback for at−risk drinkers presenting to rural emergency departments

Dr Alys Havard, The University of Western Sydney

There is a substantial burden of harm and cost associated with alcohol misuse, and a considerable proportion of this burden is borne by the health system. The health consequences, and associated costs, of alcohol consumption are disproportionately high in rural areas of Australia for two reasons: alcohol−related harm is higher on a per capita basis; and the resources with which to address these harms are limited in rural areas.

This project aims to assess the feasibility and cost-effectiveness of a personalised feedback intervention, compared with screening only, for at-risk drinkers presenting to emergency departments in rural NSW. A randomised control trial evaluating this intervention will be conducted in the EDs of 5 hospitals in rural NSW. Six weeks and six months following their initial ED presentation, participants in both the intervention group and the control group will be contacted for a follow−up survey to assess their alcohol use and experience of alcohol−related harms. These self-report data will be used to assess the impact of the intervention on participants' alcohol consumption. 

Participant data will also be linked to health records data (presentations to EDs in NSW, admissions to NSW hospitals and death records). These health records will be used to measure the impact of the intervention on repeat presentations to the emergency department and alcohol-related hospital admissions.

Regional level modelling of patient catchment areas - defining and analysing variation in primary health care need, utilisation and cost

Dr Federico Girosi, The University of Western Sydney

The study aims to investigate geographic variation of health status, healthcare need, utilisation and cost in New South Wales in order to provide a more effective means of resource allocation for improving health equity and health outcomes. The first step toward this goal is the definition of appropriate geographic areas that constitute the basis for the spatial analysis. The investigators will create geographical areas which reflect primary healthcare utilisation called "catchment areas". The complex relation between healthcare need, utilisation and cost will be disentangled using 45 and Up Study data, linked to routinely collected health services and outcomes data (hospital admissions, cancer registrations, and cause of death). The investigators will model policy interventions that alter important determinants of outcomes such as funds distribution or access to care in order to understand how better allocation of resources can lead to improved health for all.

Study of inpatient and outpatient care following a suicide attempt

Dr Matthew Spittal, The University of Melbourne

Internationally, relatively little is known about health care contacts following attempted suicide. What evidence there is suggests that the majority of those who presenting at emergency departments for self-harm are discharged to the community without referrals for follow-up care or have poor compliance with referrals for outpatient care. 

This study will investigate patterns in the use of inpatient and outpatient mental health services among individuals who have been admitted to hospital for deliberate self-harm. Using linked hospital admission, mortality and mental health ambulatory data, the investigators will construct a cohort of individuals admitted to hospital for self-harm. They will then examine the occurrence of four key outcomes among this cohort: all-cause mortality; suicide mortality; re-admission to hospital for deliberate self-harm within 30 days of the index episode; and use of mental health outpatient services within 30 days of the index episode. They will examine demographic and clinical factors that predict each of these outcomes.

Results from the study will inform strategies for the treatment of individuals who attempt suicide.

Investigating the variables surrounding adverse events in NSW hospitals

Dr Blanca Gallego Luxan, The University of New South Wales

When patients go to hospital, they expect to receive high levels of safety and care at all times. However, it is well known that hospital stay is sometimes associated with harm. Analyses of routinely collected clinical and administrative data have revealed the existence of non-clinical temporal patterns related to hospital workflow. In this research project, we use hospital data linked to death registry data to identify which groups of patients are at high risk of harm. The outcomes of this research will be used to understand the current state of patient safety in Australian hospitals and to guide research and policy about the safety and quality remedies most likely to succeed in given contexts. The outcomes of this study will also benefit future research and data collection strategies in patient safety.

Evaluating appropriate use of blood products in mothers and babies
Associate Professor Jane Ford, The University of Sydney

As a limited and costly resource, it is important that blood products are used judiciously. Blood transfusions associated with childbirth are increasing, while there is concern regarding potential adverse outcomes post-transfusion. There is likely variation in practice in the use of blood products, amount transfused and haemoglobin thresholds for transfusion at childbirth. Current monitoring of blood product use does not track patient outcomes post-transfusion.

This project aims to improve the safety and appropriate use of blood and blood products during pregnancy, childbirth and the newborn period. Record linkage of existing patient level population data (NSW Perinatal Data Collection, NSW Admitted Patient Data Collection, NSW Registry of Births Deaths and Marriages death registrations, NSW Perinatal Death Review, ABS Mortality Data, ABS Perinatal Mortality and Neonatal Intensive Care Unit Study) to CEC Red Cell Utilisation data (Blood bank & Pathology) and Australian Red Cross Blood Services will be used to address these aims. Researchers will investigate adverse outcomes of maternal and infant transfusion with particular focus on timing, type of product, amount transfused, age of blood and morbidity following transfusion. Variation in practice will be compared across hospitals and inform a separate audit.

Common Conditions, Health Outcomes and Health Services Use in 45 and Up study participants

Prof Emily Banks, Australian National University

Australia is currently facing a rapidly ageing population. There is a need for evidence to inform policy to address the associated public health issues. In particular, questions relating to access to, use of and costs of health services and the health outcomes of service use, for people in mid to later life.

This program of work uses linked data (The 45 and Up Study, NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Central Cancer Registry, NSW RBDM death registrations and ABS mortality data) and aims to investigate common health issues among 45 and Up Study participants including obesity, diabetes mellitus, joint replacement, chronic pain, fracture and prostate health, in relation to preventative factors, health outcomes and health care.

Benefits for the wider community will be related to improved understanding of a range of issues relating to access to, use of and costs of health services, and the health outcomes of service use. The program of research will have a focus on policy uptake, as such, it is also anticipated that the wider community will benefit from the implementation of evidence based policy.

Medication use and health outcomes in the 45 and Up Study

Prof Emily Banks, Australian National University

Medications are the mainstay of much clinical medicine, in terms of both individual and large-scale primary and secondary prevention of disease. However, it is widely acknowledged that use of medicines is far from optimal; significant illness, disability and loss of life could be prevented by appropriate use of medicines.

This project uses linked data (The 45 and Up Study, NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Central Cancer Registry, NSW RBDM death registrations and ABS mortality data) to investigate the relationship between medication use and personal characteristics, health services use, health outcomes and costs, and to examine how these relationships vary according to a range of socio-demographic, lifestyle and health-related characteristics.

Benefits for the wider community will be related to improved understanding of a range of issues relating to access to, use of and costs of health services, and the health outcomes of service use.

Family Mental Health and Pregnancy Outcomes: a program of population research

Dr Fenglian Xu, The University of New South Wales

Mother's mental health is known to affect pregnancy outcomes. Research also shows that selected obstetric and perinatal events increase the risk of mother's admission to hospital with mental illness in the six months following a birth. This project will investigate the relationships between mental health and pregnancy outcomes using linked data from NSW Admitted Patient Data Collection, NSW Emergency Data Collection, NSW Perinatal Data Collection, NSW Registry of Births, Deaths and Marriages, Pharmaceutical Drugs of Addiction System and NSW Register of Congenital Conditions. The results of the study will be used to identify areas where a review of services and policies relevant to pregnant women with mental health and substance use problems would be most cost effective. It will also inform policy and planning of mental health in the prenatal, pregnancy and postnatal care of all women.

Hospitalisations By Oldest Old People And Those Who Have Had Stroke In The 45 And Up Study

Prof Julie Byles, The University of Newcastle

Older people are admitted to acute hospitals more commonly and have longer lengths of stay than younger persons. This project will use linked data from the 45 and Up Study, NSW Admitted Patient Data Collection and NSW Registry of Births, Deaths and Marriages to develop understanding of patterns and pathways of hospital services as people age. By linking longitudinal survey data with health services data it is possible to determine individual factors associated with use of these services as people age. Findings will indicate which inpatient hospital services are most used by an increasingly older population, what types of services are associated with increased health and decreased need. We will also particularly focus on hospital services and health outcomes for those who have experienced a stroke. This project will allow better health care and service planning for the health needs of the older residents in the NSW community.

Health outcomes in gay men: HIM and pH data linkage study

Dr Janaki Amin, The University of New South Wales

Gay men comprise a significant minority of the Australian male population and the vast majority of the Australian HIV positive population. Very little data has been systematically collected about the determinants and long term health of gay men in comparison to the general population and no comparisons have been made in this regard between HIV positive and negative gay men. This project will use data linkage to routinely collected health databases to identify health outcomes in the Health in Men (HIM HIV negative) and Positive Health (pH HIV positive) cohorts. Data sets that will be linked include accident and emergency attendance, hospital admissions, notifiable diseases, cancer and death registers. This project will help identify the specific health needs of gay men. Further, the project will aim to examine determinants of health outcomes, particularly mental health outcomes. These findings will be fed back to community organisations to provide an evidence base on which to build policy responses.

The evaluation of a state-wide innovative patient safety improvement system on reducing hospital mortality and other adverse events - a population-based mixed-method study

A/Prof Jack Chen, University of New South Wales

In Australia, over 16% of hospital admissions are found to be associated with adverse events, including 5% resulting in patient death. After a major health review in 2008, NSW Health implemented a patient safety improvement program called Between the Flags initiated by the Clinical Excellence Commission to improve the way hospital staff recognise and respond to patients when their clinical condition starts to deteriorate. This study aims to examine the effectiveness of Between the Flags across NSW hospitals, using linked data from the NSW Admitted Patient Data Collection and the NSW Registry of Births, Deaths and Marriages.

Novel and established risk factors for cardiovascular and metabolic disease: 45 and up Study data linkage project

Prof Emily Banks, Australian National University

Cardiovascular disease remains the biggest killer of adult Australians and a leading cause of morbidity and mortality worldwide. There is a lack of large scale Australian data about cardiovascular disease and the 45 and Up Study provides a unique opportunity to expand what is known about risk factors, health outcomes and health services use in relation to cardiovascular disease. The aim of this project is to investigate the relationship between a range of novel and established demographic, lifestyle and health-related risk factors and cardiovascular disease outcomes by linking baseline questionnaire data from the 45 and Up Study to data from the NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, NSW Central Cancer Registry, NSW Registry of Births, Deaths and Marriages and Australian Bureau of Statistics.

Economic analysis of the social costs of skin cancer in NSW

Ms Melanie Crane, Cancer Institute NSW

Few economic evaluations have been conducted in Australia to measure the magnitude of the impact of skin cancer. There are large gaps in understanding the wider costs of skin cancer, particularly the impact of non melanoma skin cancer. This project aims to quantify the direct and indirect costs to society associated with skin cancer in NSW and to analyse the cost effectiveness of the Cancer Institute NSW skin prevention activities in NSW, using linked health records from the NSW Central Cancer Registry, NSW Admitted Patient Data Collection, NSW Emergency Department Data Collection, 45 and Up Study, NSW Registry of Births, Deaths and Marriages and Australian Bureau of Statistics. With a clearer understanding of the cost of skin cancer, the level of investment required for prevention can be better defined.

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.