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.

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.