Sources of epidemiological data for use in generating utilisation estimates

A number of sources for epidemiological data are available to be used when preparing utilisation estimates for submissions to the Pharmaceutical Benefits Advisory Committee (PBAC).

Australian Government Sources

Australian Bureau of Statistics

• National Health Survey
• Survey of Disability, Ageing and Carers
• Survey of Mental Health and Wellbeing of Adults
• National Aboriginal and Torres Strait Islander Health Survey

Australian Institute of Health and Welfare

• National Mortality Database
• National Cancer Statistics Clearing House
• National Diabetes Register

Department of Health and Ageing

• Service Activity Reporting (conducted jointly by the National Aboriginal Community Controlled Health Organisation and the Office for Aboriginal and Torres Strait Islander Health)

Pharmaceutical Benefits Scheme

• Medicine statistics including the Australian Statistics on Medicines (ASM) annual publication produced by the Drug Utilisation Sub-Committee of the Pharmaceutical Benefits Advisory Committee. The data available in the ASM represent estimates of the aggregate community use of prescription medicines in Australia.

Medicare Australia

• Statistics (Reimbursement data)
• Pharmaceutical Benefits Scheme
• Repatriation Pharmaceutical Benefits Scheme
• Practice Incentives Program and Service Incentive Payments
• Medicare Benefits Scheme

National Prescribing Service

State and Territory Government Sources

State, Territory and local Governments collect information about the health, wellbeing and demographics of residents in their jurisdiction.  Examples include:

• Victorian Population Health Survey
• The Victorian Population Health Survey program was established in 1998 and collects quality information at the State, regional and local government area levels about the health, lifestyle and wellbeing of adult Victorians aged 18 years and over. Published annually, the VPHS report contains data on health and lifestyle, including physical activity levels, smoking prevalence, alcohol consumption, intake of fruit and vegetables, selected health and screening checks, body weight, asthma and diabetes prevalence, psychological distress and social networks.
• Western Australia Health and Wellbeing Surveillance System
• Continuous data collection developed to monitor the health and wellbeing of Western Australians to provide information about state or national indicators of health and wellbeing, or to provide information about areas of health, lifestyle and demography that are not available elsewhere and are necessary to understand the dynamics of healthy behavior and outcomes.

National Linked Data Sources

Medicine utilisation data can be linked with multiple data sources on a state level which provide results that can be generalised nationally. Such linkages will enable individual level studies of medicine use and associated health outcomes.

• Population Health Research Network
• The Population Health Research Network (PHRN) is a program aimed at creating Australia's first national data linkage network.  Established with the backing of the Australian Government (as part of the National Collaborative Research Infrastructure Strategy) and supported by every Australian state and territory, the PHRN is building a network that will enable existing health data from around the nation to be brought together and made available for vital health and health related research purposes.  This research enables health care planners, providers and policy makers to respond more effectively to the changing needs of the Australian population.
• Centre for Data Linkage (CDL)
• The Centre for Data Linkage was established in 2009 and is hosted by the Curtin Health Innovation Research Institute (CHIRI) at Curtin University in Western Australia.  The CDL is responsible for enabling linkage between jurisdictional datasets, and between these datasets and research datasets for the purpose of health and health related research projects.  The CDL does not hold any data collection, its role is that of linkage.  The Centre for Data Linkage (CDL) is an integral part of the PHRN and is the main data linkage facility for national projects run under the PHRN collaboration.

State Level Linked Data Sources

(state based nodes of the Population Health Research Network)

• Centre for Health Record Linkage (CHeReL)
• The Centre for Health Record Linkage (CHeReL) was established in 2006 to create and maintain a record linkage system for health and human services in NSW and the ACT. This infrastructure provides access to resources for researchers, health planners and policy makers who conduct research that is in the public interest and in accordance with the aims of the CHeReL.
• Data Linkage Western Australia
• The WA Data Linkage System was established in 1995 to connect all available health and related information for the WA population. This information is used for ethically approved research, planning and evaluation projects which aim to improve the health of Western Australians.
• Health LinQ
• Health LinQ was established in 2009 to facilitate access to linked administrative data and to provide consultation services to researchers who will be using this data in Queensland.
• SA-NT DataLink
• Linkage of administrative and clinical datasets providing an evidence base for researchers and policy makers to better understand and monitor the population health and wellbeing impacts of policy and investment decisions for South Australians and Northern Territorians.
• Victorian Data Linkages
• Victorian Data Linkages (VDL) provides a mechanism for administrative, research and other datasets to be used for projects that are of benefit to the public. It undertakes linkages of health-related datasets and provides a means for researchers and policy makers to gain access to this valuable population-wide data for approved research projects.  VDL is not a central repository of data or a data warehouse and it does not hold the source datasets.  Instead, it functions as a trusted intermediary that, with the approval and collaboration of data custodians, enables linkages and allows researchers to gain access to data in a secure and privacy-sensitive way.
• Tasmanian Data Linkage Unit (TDLU)
• The Tasmanian Data Linkage Unit (TDLU) is a collaborative project of the Department of Health and Human Services (DHHS) and the Menzies Research Institute Tasmania (MRI).  DHHS is the lead agency, outsourcing the operation of the unit to the MRI.  Initial funding is being supplied by the Australian Government, administered through the Population Health Research Network (PHRN).  The TDLU is not a research project in itself, but will provide valuable infrastructure to be utilised by many research projects not only within the MRI but also throughout the state and eventually the rest of Australia.  The TDLU will not be used to access information about any particular person, and will not be used for administrative purposes.  The value of the linked data is in the broad view it provides of populations rather than individuals.  The protection of personal privacy is paramount in the design of the processes and protocols to be utilised by the unit.

Commercial Sources

• AsteRx
• Prescribing statistics data and clinical market research.
• BEACH—Bettering the Evaluation and Care of Health program—Family Medicine Research Centre, University of Sydney
• Established 1998, BEACH continually collects cross-sectional clinical encounter data in general practice in Australia. Data collected include: GP and patient characteristics; patient reasons for encounter; problems managed; and (linked) the treatments (including pharmaceuticals prescribed, advised for over-the-counter purchase, and those provided direct by the GP) for each problem managed.
• Cegedim Strategic Data
• Cegedim Strategic Data is a late phase Clinical Research and full service Market Research company providing longitudinal patient data from General Practitioners and patient database studies with specialists and General Practitioners.
•  General Practice Research Network (GPRN) – Health Communication Network (HCN)
• National network of Australian clinicians using Medical Director that provides pharmaceutical companies and health care researchers with information about GP patient encounters: medications, conditions, history and reasons for visit.
• Hi Connections Pty Ltd
• Hi Connections has provided services to the pharmaceutical industry since October 2004. This includes longitudinal patient tracking back to June 2002 to identify therapeutic pathways pre and post initiation; persistence and compliance; co-medication, dosing and titration; time to event and authority indication analyses. Analyses are based on a 10% PBS patient sample pioneered by Hi Connections and supplied by the Department of Human Services (formerly Medicare Australia). Contact: Gordon Calcino 0414 628 436 or 02 6231 2211; Lisa Calcino 0414 628 946; PO Box 1332 Woden ACT 2606.
• IMS Health
• Provider of market intelligence and strategic solutions to the pharmaceutical and life sciences fields. Among other data, IMS supplies prescription data which includes information relating to therapy, dose, repeats, diagnosis, age and sex of patients seen in general practice. The data is illustrative of GPs who are representative of the varying sizes and geographic distribution of general practices through Australia.

Disease state or gender based sources

Information on specific medical conditions is available from a number sources such as disease state specific organisations, associations, foundations and research institutes.  More general information is available from the Australian Bureau of Statistics and Australian Institute of Health and Welfare.

• Australian Longitudinal Study on Women’s Health (ALSWH)
• This study has been examining the health and wellbeing of Australian women since 1996.
• Australian Diabetes, Obesity and Lifestyle Study (AusDiab)
• The largest Australian longitudinal population-based study examining the natural history of diabetes, pre-diabetes (in which glucose metabolism is impaired but not to the level to cause diabetes), heart disease and kidney disease.
• Australian and New Zealand Dialysis and Transplant Registry (ANZDATA)
• The Registry records the incidence, prevalence and outcome of dialysis and transplant treatment for patients with end stage renal failure.
• Australian Rheumatology Association Database (ARAD)
• The Australian Rheumatology Association Database (ARAD) has been established as a national arthritis database to provide valid and reliable longitudinal clinical data of arthritis patients in Australia. ARAD collects health information from Australian patients with arthritis to monitor the benefits and safety of new treatments. All patients being treated with the new biologic agents and other patients taking conventional drugs are invited to take part in the follow up program. ARAD measures the impact of arthritis on quality of life and physical function and the long-term effects of all arthritis drugs.
• National Joint Replacement Registry
• The purpose of the Registry is to define, improve and maintain the quality of care of individuals receiving joint replacement surgery. The registry monitors all joint replacements that take place in Australian hospitals (both private and public) and is maintained by Australian Orthopaedic Association. The registry collects a defined minimum data set that enables outcomes to be determined on the basis of patient characteristics, prosthesis type and features, method of prosthesis fixation and surgical technique used. The Registry also monitors mortality rates.

Further Information

Review and evaluation of Australian information about primary health care – A focus on general practice
(This document published by the Australian Institute of Health and Welfare provides an in depth overview of a number of the Australian data sources available).

Feedback, including suggestions for additional sources or organisations who wish to be added, is welcome and should be forwarded to:

Maxine Robinson
Drug Utilisation Sub Committee Secretary
Department of Health and Ageing
GPO Box 9848
MDP 952
Canberra ACT 2601
Australia

Ph: (02) 6289 7293

Email: dusc@health.gov.au