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Projects approved by the AIHW Ethics Committee during 2011

Pharmacist Influence on Prescribing for Risk Factors in Peripheral Arterial Disease (EC 2011/1/1)

Applicant: Flinders Medical Centre
Approval valid until March 2012

The aim of this project is to examine the rate of prescription of risk factors reducing medications to patients with peripheral arterial disease or carotid disease. It will examine the influence that pharmacists have on prescription habits and determine whether they have an impact upon patient outcomes. A group of former Flinders Medical Centre patients will be linked with the National Death Index to obtain date and cause of death information.

Middle East Area of Operations Health Study (EC 2011/1/2)

Applicant: University of Queensland
Approval valid until June 2012

The aim of this project is to investigate mortality and cancer incidence in Australian Defence Force personnel who have been deployed to the Middle East Area of Operations since 2001. Information on the ADF personnel will be linked with the National Death Index in order to obtain date and cause of death for those who have died, and with the Australian Cancer Database.

Impact of Treatment of Obesity on Cancer Incidence and Survival (EC 2010/3/34)

Applicant: Monash University
Approval valid until March 2012

This study involves a comparison between the incidence of cancer and the survival rates of patients whom have undergone surgical weight loss with a similarly aged obese cohort. Information on a group of such patients will be linked with the National Death Index in order to obtain data and cause of death to determine rates of cancer mortality amongst the surgical weight loss cohort.

TasPed - Investigation of the relationship between pedometer measured physical activity and mortality (EC 2011/1/3)

Applicant: University of Tasmania
Approval valid until May 2011

This is a data integration study conducted by the Menzies Research Institute of the University of Tasmania and the Murdoch Institute of the Royal Children’s Hospital designed to investigate mortality and cause of death amongst the subjects of three Tasmanian studies: the Tasmanian Study of Cognition and Gait (TasCog), Tasmanian Older Adult Cohort (TasOac) and the Australian Diabetes, Obesity and Lifestyle (TasDiab). The TasCog and TasOac studies will be linked to the National Death Index, to obtain fact and cause of death and then link those results with the AusDiab study. The aim of the project is to derive information on significant risk factors contributing to mortality by contrasting the environmental and lifestyle factors contained within the Tasmanian surveys against the mortality information. 

Psychopathology following traumatic injury:  screening for high risk (EC 2011/2/9)

Applicant: Adelaide University
Approval valid until July 2012

This project aims to examine mental health impacts following traumatic injury and the role of genetics in the development of post-traumatic stress syndrome (PTSD) and other post-trauma psychopathology. Previously, participants in this project have had their data collected at 3, 6 and 24 month intervals following injury. The current research  aims to collect data at six years post injury to examine the long term outcome of injury through structured clinical interview over the telephone as well as completion of a questionnaire and a saliva sample to examine potential genetic contributors to PTSD. Their list of participants will be linked to the National Death Index to ensure that deceased participants were not contacted.

Investigating the long term psychological impact of bushfire exposure (EC 2011/2/10)

Applicant: Adelaide University
Approval valid until June 2013

This study is the fifth phase of a longitudinal study, which commenced in 1983 following the Ash Wednesday Bushfires. The study is examining the long-term psychiatric outcomes of exposure to a major Australian bushfire in the context of other lifetime trauma, by using an unexposed control sample recruited at the time of the initial disaster. The list of participants will be linked to the National Death Index to ensure that deceased participants were not contacted.

Sedation practices in intensive care in Australia and New Zealand (ANZ SPICE) (EC 2011/2/12)

Applicant: Monash University
Approval valid until June 2012

This study is a prospective observational study of sedation and analgesic practices, level of sedation achieved, adequacy of pain relief and development of delirium during the intensive care stay of patients on a breathing machine. A list of patients will be linked to the National Death Index to obtain date of death in order to establish the survival status of patients 180 days after enrolment in the study.

Determining the impact of opioid substitution therapy upon mortality and recidivism among prisoners:  a 22-year data linkage study (EC 2011/2/13)

Applicant: Burnet Institute
Approval valid until 31 December 2013

This study is to quantify the population-level impact of opioid substitution therapy on mortality (both in prison and following release) and recidivism for opioid dependent prisoners in NSW. Data on participants in this study will be linked to the National Death Index, (45,700) to obtain date and all cause of death in order to analyse survival and risk of death by a range of factors.

The Geelong Osteoporosis Study:  a population-based study (EC 2011/2/14)

Applicant: Barwon Health (University of Melbourne)
Approval valid until June 2013

This project aims to examine fractures (hip and non-hip) and other exposures as risk factors for mortality, using data from the population-based Geelong Osteoporosis Study. The project previously related only to the female members in the study.  The project has been expanded to include  all people in the Study (males and females) to 31 December 2010, and to also investigate further exposures as risk factors for mortality. All people in the study will be linked to the National Death Index to obtain fact and date of death.

The Australian and New Zealand Diabetes and Cancer Collaboration (EC 2011/2/15)

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until June 2014

The aim of this study is to determine whether diabetes is associated with an increased risk of all cause and site specific cancer in Australians. Approximately 150,000 names (collected from 19 sites) will be linked to the National Death Index to obtain fact and date of death, age of death (in 5 year age group), causes of death and postcode at death, and with the Australian Cancer Database to obtain information on cancer diagnosis.

National Diabetes Register – linkage with the National Death Index (EC 2011/2/17)

Applicant: Australian Institute of Health and Welfare
Approval is ongoing

The National Diabetes Register is an on-going population-based register of people living in Australia with insulin-treated diabetes who began using insulin to manage their diabetes on or after 1 January 1999. Ongoing linkage will be carried out with the National Death Index in order to establish fact and date of death of the registrants.

Validation of the Enhanced Indigenous Mortality Database using NSW Native Title register data (EC 2011/2/19)

Applicant: Australian Institute of Health and Welfare
Approval valid until June 2012

The aim of this project is to validate the Indigenous status in the Enhanced Indigenous Mortality Database. The researcher will be testing the validity of the Indigenous status through linkage of the Enhanced Indigenous Mortality Database with the Native Title Services Corporation research database, a register of NSW Aboriginal people, informed by evidence from a wide range of sources of the connection between Aboriginal families and their traditional lands.
The linkage of the Enhanced Indigenous Mortality Database and the Native Title Services Corporate database will take place at the Native Title Office and will be carried out by an AIHW staff member. A Project Advisory Committee has been established which will assess the integrity of the results of this research.

Health-related quality of life and long term survival of patients after cardiac surgery (EC 355)

Applicant: Dept of Cardiac and thoracic Surgery, Flinders Medical Centre
Approval valid until 1 April 2016

This project is to determine the association between health-related quality of life, clinical measures and long-term survival after heart surgery.  Pre- and post-operative data and on patients admitted for heart surgery at the Cardiac and Thoracic Surgical Unit a Flinders Medical Centre will be linked with the National Death Index.

The Australian Mesothelioma Registry (EC 2011/3/22)

Applicant: The Australian Mesothelioma Registry
Approval valid until August 2016

This study is to gain a better understanding of the exact relationship between asbestos exposure and mesothelioma.  The Australian Mesothelioma Registry collects data of all new cases of mesothelioma diagnosed from 1 July 2010.  The Registry monitors incidence and mortality, and identifies patterns of occupational and environmental asbestos exposure. 

Linkage to the National Death Index will be carried out each year to obtain fact, state/territory, date and all causes of death in order to determine survival rates in relation to demographics, diagnosis information (such as type of mesothelioma) and cause of death. 

Risk factors for premature mortality and the development of cardiovascular disease and related conditions in Indigenous Australians:  follow-up of the DRUID study cohort

Applicant: Menzies School of Health Research, Royal Darwin Hospital
Approval valid until December 2015

This project is a follow up of the Diabetes and Related conditions in Urban Indigenous people in the Darwin Region (DRUID) study population to determine cardiovascular disease (CVD) and related outcomes (e.g. heart disease, strokes, diabetes and kidney disease deaths). The aim is to improve the understanding of CVD risk in Indigenous people, and develop better clinical tools to assist in CVD prevention and management.  Linkage of the DRUID study population to the National Death Index will be undertaken to obtain date and all causes of death, and year and state/territory of registration.

Australian cohort study of cataract surgical patients:  does correction of visual impairment by cataract surgery improve survival (EC 2011/3/24)

Applicant: Centre for Vision Research, Dept of Ophthalmology, University of Sydney
Approval valid until August 2012

This project is to assess medium and long-term mortality among older persons who had cataract surgery to correct visual impairment, and compare the mortality rate of older persons of similar age who remained with visual impairment due to cataract or other ocular diseases.  Linkage  of cataract surgery patients aged 64+ years from the Westmead Hospital Eye Clinic (2004–07) to the National Death Index will be performed to obtain fact of death, and date and cause of death.

Predictors of cardiovascular mortality in rural Victoria (EC 2011/3/25)

Applicant: Heart Research Centre, Royal Melbourne Hospital
Approval valid until September 2012

This study aims to determine predictors of CVD mortality for rural Victorians, and to assess the accuracy of current tools for measuring CVD risk in a rural population.  Data from the Rural Risk Factor Prevalence Survey will be linked with the National Death Index to obtain information on mortality, including fact, date and cause of death and state/territory of death registration.

Molecular epidemiology of ovarian cancer:  The Australian Ovarian Cancer Study (AOCS)(survival sub-study) (EC 2011/3/27)

Applicant: Gynaecological Cancers Group, Queensland Institute of Medical Research
Approval valid until December 2015

The Australian Ovarian Cancer Study (AOCS) is a population-based case-control study that has generated valuable new information regarding genetic and environmental risk factors for ovarian cancer. The majority of the patients in the study were diagnosed with ovarian cancer more than 5 years ago. The aim of the AOCS survival sub-study is to conduct a longitudinal follow-up of the AOCS group (about 4,100 participants) to evaluate the role of genetic and environmental factors in determining survival. Linkage of the group with the National Death Index will be performed to obtain date and all causes of death, and state/territory of registration.

A model for a national, anonymised, retrospective population-based tumour biobank (EC 2011/1/4)

Applicant: Prince of Wales Clinical School, University of New South Wales
Approval valid until 31 July 2015

This study is to access and analyse tissue samples for three groups of people diagnosed with cancer for the purpose of examining the association between tumour factors and cancer incidence, and prognosis between groups with known immune deficiency and a control group with no known immune deficiency. 

Linkage will be performed using two groups (one of people infected with Human Immunodeficiency Virus  and the second of organ transplant recipients) and the Australian Cancer Database.

The childhood determinants of adult health (CDAH) cohort study (EC 2011/3/28)

Applicant: Menzies Research Institute of Tasmania, University of Tasmania
Approval valid until 28 February 2014
 

The Childhood Determinants of Adult Health (CDAH) Study is a follow-up to the 1985 Australian Schools Health and Fitness Survey (ASHFS), a nationally representative study of 8,498 children aged 7–15 years. Using data from repeated measures of lifestyle, physical characteristics and mental health collected since childhood, the study’s aims are to determine the contribution of childhood factors to the risk of developing cardiovascular disease (CVD), type 2 diabetes and depression in adulthood.  The second followup (CDAH-2) has recently been completed and has collected information on risk factors for disease.  Linkage of the study group to the National Death Index will be performed to obtain fact and date of death, and all causes of death.

Outcomes of surgical aortic valve replacement in octogenarians (EC 2011/3/20)

Applicant: Department of Cardiothoracic Surgery, Royal Prince Alfred Hospital
Approval valid until 15 November 2012

The aim of the study is to evaluate surgical outcomes of octogenarian patients undergoing conventional aortic valve replacement.  The results will inform future clinical decision making and selection of patients for surgery. The study includes all patients who underwent surgery during a five-year period at two hospitals.  Linkage to the National Death Index will be undertaken to obtain date and causes of death where applicable.

Linkage of the Geelong Hospital ICU database with the National Death Index (EC 2011/3/21)

Applicant: Barwon Health
Approval valid until November 2018

The Geelong Hospital ICU database contains complete clinical datasets for over 16,000 consecutive ICU admissions.  Although it contains details of hospital outcomes it has no other long-term outcome data.   Linkage of the database to the National Death Index will be undertaken to obtain date of death, all causes of death, and state and year of registration.

HCV Incidence Cohort:  10 year mortality study (EC 2011/4/33)

Applicant:  Kirby Institute, University of New South Wales
Approval valid until December 2012

This study aims to examine the 10 year mortality rates and causes of death in a NSW group of injecting drug users (IDUs) enrolled in the Hepatitis C Virus (HCV) Incidence Study. Linkage to obtain date and cause of death from the National Death Index will be undertaken.  Matching was to be done by date of birth, gender and the first two letters of first name and of surname (rather than full name).  IDUs are expected to have greater mortality than the general population.

Investigating vaccine safety via cross jurisdictional data linkage of the Australian Childhood Immunisation Register with hospital morbidity data (EC2011/4/34)

Applicant: University Department of Paediatrics, Womens and Childrens Hospital, Adelaide
Approval valid until 30 December, 2012

The object of this part of the ARC-funded VALiD study is to determine whether there are increases in the incidence of admissions to hospital and/or attendances to Accident and Emergency departments for selected adverse events within a defined risk period following childhood vaccination. The Australian Childhood Immunisation Register will be linked with hospital and emergency department data from three states for children up to 7 years for the period from 2003 to 2010.

National Diabetes Services Scheme (EC 2011/4/35)

Applicant: Diabetes Australia
Approval is ongoing

The National Diabetes Service Scheme (NDSS) is an Australia-wide program, established in 1987, which provides testing strips, syringes and needles at subsidised prices to people with diabetes. The scheme is administered by Diabetes Australia on behalf of DoHA. The NDSS database will be linked to the National Death Index to establish fact and date of death in order to maintain the database. This would ensure accurate reporting of diabetes statistics from the database, including the number of people using the scheme, and help ensure that Diabetes Australia does not send material to deceased registrants.

Diabetes Care Project (EC 2011/4/38)

Applicant: McKinsey and Company
Approval valid until June 2014

The Diabetes Care Project (DCP) is a three-year pilot of a new model of healthcare delivery designed to improve care for people with diabetes. A consortium, led by global management consultancy McKinsey and Company, has been appointed to deliver the pilot for the Department of Health and Ageing (DoHA). The pilot will involve up to 150 practices in three states, and will compare results between two intervention groups of general practices and a control group, to enable a rigorous evaluation of the outcomes. Participation will be voluntary for consumers and healthcare providers.

The project will evaluate whether new models of care can deliver better quality healthcare outcomes, enable care to be provided in more flexible ways, improve patient and practitioner experiences, and prove economically sustainable and scalable nationally. The project will test technology systems to enable better information sharing, a flexible funding model that will include improvement support payments for practices, a Care Facilitator role to manage the integrated care approach and an education and training program for consumers and healthcare professionals.

With patient consent, the project includes the linkage of data from the Medicare Benefits Scheme, Prescription Benefits Scheme, Hospital records and the National Diabetes Services Scheme.

Amended protocol for data supply and linkage of National Diabetes Services Sheme data for compilation of the National Diabetes Register (EC 2011/4/36)

Applicant: Australian Institute of Health and Welfare
Approval is ongoing

The National Diabetes Register (NDR) is a population-based registry of people living in Australia who began using insulin to manage their diabetes on or after 1 January 1999. The NDR is linked to the National Death Index to establish fact and date of death of the registrants to inform analyses and also maintain the register for use in epidemiological or clinical studies.  The linkage will now be carried out every six months.


Project extensions and variations approved by the AIHW Ethics Committee during 2011

National Diabetes Service Scheme (EC 2008/3/17)

Applicant: Baker IDI Heart and Diabetes Institute
Approval valid until March 2014

This study involves the use of  the Australian Cancer Database and using a prior cohort created through linkage with the National Death Index and Australian National Diabetes Service Scheme database in 2010 to determine whether individuals with diabetes are at an increased risk of suffering from cancer than those without diabetes. 

Suicide among Workers’ Compensation Claimants in South Australia (EC 2009/4/46)

Applicant: The Flinders University of South Australia
Approval valid until November 2011

The project aims to measure the rate of suicide amongst worker’s compensation claimants in comparison to rates in segments of the South Australian population, assess relationships between suicide and characteristics of workers making compensation claims and identify risk factors for suicide amongst claimants. The research involves linkage to the National Death Index of approximately 640,000 cases of suicide in South Australia that occurred between July 1990 and June 2006 to obtain fact of death, all causes of death and jurisdiction in which the death occurred.

Rates of Unplanned/Unexpected Readmissions Following Select Surgical Procedures and Medical Conditions (EC 2009/3/41(3))

Applicant: The Flinders University of South Australia
Approval valid until November 2011

This project involves data linkage of subsets of the National Hospital morbidity database to enable annual calculation of rates of unplanned/unexpected readmissions for schizophrenia and bipolar disorder for the OECD Health Care Quality Indicators Data Collection 2010–2011 and for future years of the same collection.

Does echocardiography predict outcome in diabetes patients? (EC404)

Applicant: Austin Health
Approval extended to December 2013

The aim of this project is to assess the predictive value of echocardiography in patients with diabetes against the current standard clinical and biochemical markers. A group of 400 patients with diabetes, who underwent echocardiography and blood sampling, were linked with the National Death Index to obtain date and cause of death. 

The scope of the study is being expanded with a further linkage of this group to the National Death Index to enable further recruitment of participants and enable a 10-year analysis of adverse cardiac outcomes in all study participants. 

Living with Diabetes Study (EC 2009/2/17)

Applicant: University of Queensland
Approval extended to June 2012

This project is a cohort study of approximately 4,000 people with diabetes conducted by the University of Queensland Medical School.  The study aims to understand the many factors that influence the health and well-being of people living with diabetes mellitus, and will identify social, health and lifestyle factors associated with quality of life for people with diabetes, and track their experience with the health care system. 

Annual linkages were undertaken between 2009 and 2011 to the National Death Index to obtain fact and date of death, death registration year, death registration state, underlying cause of death and additional causes of death. 

Health-related quality of life and long term survival of patients after cardiac surgery (EC 355(2))

Applicant: Flinders Medical Centre
Approval valid to April 2016

The researcher first sought approval on 25 May 2004 for the integration of a cohort of patients over the age of 80, who had undergone heart surgery, to be linked to the National Death Index to determine state of registration and date of death. The researcher in this application sought approval to integrate all patients who had undergone heart surgery to the National Death Index to obtain date, state of registration and all causes of death.

The Australian Paediatric Cancer Registry (EC 379(2))

Applicant: Cancer Council Queensland
Approval valid until May 2016

The Registry is a collection of information on the incidence, stage, treatment and survival of all children diagnosed with cancer, aged between 9 and 14 years, in Australia, since 1983. The researcher sought approval to continue ongoing integration with the National Death Index and also to access the Australian Cancer Database, on an ongoing basis, to obtain additional information (second and subsequent cancers in existing cases). The Committee noted that approval would be required from the States and Territory ethics committee and data custodians for access to the Australian Cancer Database.  The Committee noted that the researcher sought approval for access to the ACD on an ongoing basis and granted approval to May 2016.

Linking the Supported Accommodation Assistance Program, Child Protection and Juvenile Justice Data Collections (EC 2008/3/29)

Applicant: Australian Institute of Health and Welfare
Approval valid until April 2012

This project involves linkage of the Supported Accommodation Assistance Program and Juvenile Justice Data Collections and available jurisdictional child protection data to enable an analysis of movements between these sectors and of the characteristics of young people who are involved in more than one sector.  Approval was extended to April 2012.

Analysis of aged care service use patterns (EC 2008/3/28)

Applicant: Australian Institute of Health and Welfare
Approval valid until March 2012

This project involves an extension of the NH&MRC-funded project Care pathways for older Australians (EC 410) which links national aged care data to inform key policy developments. It builds upon the previous project to include additional data to enable analyses that cover recent program initiatives, including extended aged care at home packages for people with dementia (EACH Dementia) and transition care. The inclusion of more data also enables more powerful longitudinal analyses and the analyses of trends over a longer time period.

The project involves updating the existing linked data set created for the Care pathways project up until 2007-08. The data sets being linked include those for aged care assessment, residential aged care, community aged care and extended aged care at home packages, home and community care, and veterans’ home care. Linkage to the National Death Index will also be done for the purpose of determining those aged care clients who have died. All data linkage will be carried out within the AIHW.

Data linkage to produce non-duplicated client counts for National Healthcare Agreement Performance Indicator #21:  treatment rates for mental illness (EC 2010/3/39)

Applicant: Australian Institute of Health and Welfare
Approval valid until August 2012

This project involves the linkage of data from the Community Mental Health Care National Minimum Data Set (supplied by jurisdictions to the AIHW) and Medicare Benefits Scheme claims data (provided by Medicare Australia or the Department of Health and Ageing) by the AIHW Data Linkage Unit.  The linked dataset will be used for performance reporting under the National Healthcare Agreement.  An extension was granted until August 2012 due to delays in obtaining approvals for access to the data. 

Hospital use by people in residential aged care (EC 2009/4/55)

Applicant: Australian Institute of Health and Welfare
Approval valid until June 2012

This project involves the linkage of Residential Aged Care and National Hospital morbidity datasets 2008/09 using date of birth, sex, postcode, hospital and residential aged care episode characteristics, and dates of separation and admission in order to undertake analysis of movements between hospital and residential aged care facilities.  The Residential Aged Care data is also being linked to the National Death Index to determine date and cause of death for those people who have died.

Mothers who die: a national population study of mothers dying in pregnancy and in the first year after the end of pregnancy

Applicant: Australian Institute of Health and Welfare
Approval valid until December 2012

This project involves the linkage of state and territory perinatal data (approximately 37,000 records) for the period 1997 to 2009 with the National Death Index, to obtain date of death, place of death, pregnancy flag and cause of death and subsequent integration with the National Perinatal Data Collection for expert categorisation of deaths as direct, indirect or incidental deaths.  The project is being extended to include data for 2009 and 2010 and also the following additional items from the perinatal collections: body mass index, number of antenatal visits PSANZ cause of death of baby, socio-economic index for areas, remoteness and assisted reproductive technology.  Approval was granted.

Use of aged care programs (further extension to Pathways in Aged care (EC 2008/3/28 and EC 40)

Applicant: Australian Institute of Health and Welfare
Approval valid until December 2012

This project is a further extension of the projects Care pathways of older Australians (EC 410) and Analysis of aged care programs (EC 2008-3-28, see above) funded by the Department of Health and Ageing. This work, like those projects, involves the linkage of data for six aged care programs as well as the National Death Index, in this case for a further three years from 2008-09 to 2010-11.  The linkage will thus be updated with the most currently available data including recent program initiatives and expansions, to enable analyses of particular questions of policy interest regarding the patterns of use of aged care programs by older Australians. Particular analyses will focus on the characteristics of people who are eligible but don’t take up services or take up a different service than recommended, and whether the use of community services delay entry to permanent residential aged care.