FutureHealth WA – Health Database Support

WA has developed world-leading databases of health information, and data linkage capacity to connect and extract data from these.

WA Health databases and related data linkage capacity have proven to be resources of immense value to the WA health and medical research sector, and have resulted in many publications and research grants, as well as having an impact on health policy and practice.

However, better and more extensive use of the databases could make a significant contribution to improving the competitiveness of the WA health and medical research sector in obtaining national and international grant funding. Therefore, through the FutureHealth WA initiative, the Department of Health provided funding to enhance these databases and data capacity.

FutureHealth WA

The FutureHealth WA (FHWA) initiative is administered by the Department of Health Research and Innovation Office in the Division of Clinical Services and Research.

Further information about the program’s aims, current funding opportunities and past initiatives can be viewed on the FutureHealth WA landing page.

Australian Rare Disease Registry

There are 5,000 to 8,000 known rare diseases that are life-threatening or chronically debilitating diseases of such low prevalence (1 in 2,000 people) that special combined efforts are needed to address them. Collectively, rare diseases are estimated to affect approximately 6-8% of the population. This rarity means that often there are few data on specific rare diseases and hence diagnosis and treatment options for rare diseases are significantly lagging behind the community need.

WA Health is leading the nation with the development of a national plan for rare diseases and a draft WA Rare Disease Strategy (developed by the Office of Population Health Genomics). By linking existing registries into a purpose-built rare disease register, new innovative research will be made possible, driven by the needs of the rare disease community.

The purpose of this FHWA program of work is to enable access to rare disease data by clinicians and researchers to assist in the development of clear diagnostic pathways and by connecting with international registries, thus enabling patient recruitment for clinical trials.  It is expected that this register will grow in value as it accrues data over time, providing an immediate benefit to those affected by rare disease while also creating an invaluable resource for future analyses.

Find out more about the Department of Health Office of Population Health Genomics (external site).
Busselton Health Study

The Busselton Health Study (BHS) was started in 1966 with the recruitment of individuals with recurrent cross-sectional health studies of over 90% of available adults and children from the Busselton population.

Longitudinal and cross-sectional health data have been collected from nearly 30,000 participants and include a new study of healthy ageing in adults born between 1946 and 1964, providing a world-class population health data set that is amongst the longest running epidemiological studies in the world. 

Over the last decade the BHS database has been utilised by researchers to publish over 350 peer-reviewed publications and attract in excess of $6 million in National Health and Medical Research Council funding. Such research has the potential to be translated into health benefits not only within WA, but also globally.

This FHWA program of work is intended to enhance the BHS resources and capabilities, contribute new data to the study and improve its accessibility to researchers.

Find out more about the Busselton Health Study (external site).
Data linkage

The WA Data Linkage System was established in 1995 to develop and maintain a system for linking various sources of health-related information for the whole WA population. By definition, ‘data linkage’ is a process by which pieces of information that relate to the same person, family, place or event can be connected.  Every time an individual comes into contact with a service, data are created. When linked data for many individuals are combined, analyses can be done at a population level, providing many potentially valuable insights into human health. Rigorous security and privacy procedures are in place and all data are de-identified before being supplied for research purposes.

The Department of Health WA Data Linkage Branch matches health information from different datasets and facilitates the supply of extracts in response to approved applications. It also undertakes programs for the improvement of the WA Data Linkage system and data delivery. One such program is the development of the Custodian Administered Research Extraction Server (CARES), which is designed to deliver linked information from multiple sources for health services, population health and medical research.  The first prototype was developed with funding from the Department of Health and an ARC Linkage Grant led by the Telethon Kids Institute.

This FHWA program of work will further extend the utility of CARES for health and medical research by including clinical data sets.  Such datasets include pathology, pharmacy, theatre management as well as trauma and disease registers.

Find out more about the Department of Health Data Linkage Branch.
The Western Australian Pregnancy Cohort Study – the 'Raine Study'

The Raine Study commenced in 1989, prospectively recruiting 2,900 pregnant women into a cohort study examining ultrasound imaging.  The 2,868 children born to these women have been followed through childhood, adolescence and now young adulthood.  Currently, the Raine Study dataset contains 20 million pieces of genetic information and more than 70,000 phenotype measurements.  The phenotype data are broad and multidisciplinary, including physical, mental and social aspects of development.  To date, 383 publications have utilised data from the Raine Study, with over half of these being published since 2011, emphasising that the value of the Study is increasing over time.

The Raine Study cohort are now moving into early adulthood, presenting a unique opportunity to relate the onset of adult diseases to the earlier measurements available for each participant.  The increasing value of the data is reflected in the sharp rise in the number of research groups wanting to utilise the data, which outstrips what can be accommodated with existing resources.

This grant completed in 2016 and the Raine Study Scientific Directors provided the following statement:

“The generosity of the FutureHealth WA initiative resulted in lay summaries of over 200 scientific publications made accessible to participants, stakeholders, policy makers and the wider community. The framework for an integrated data management platform incorporating a system to provide participants’ with results was developed.

A detailed inventory of over 170,000 biological samples collected over the past 25 years was compiled facilitating decisions at Executive level to access a finite and irreplaceable resource. Funds were utilized for blood assays on 1,100 blood samples collected during the 22 year follow-up, to manage and analyse sleep and actigraphy data collected during the 22 year and parent follow-up and to biobank parent blood samples for later analysis. This funding directly enhanced research capacity through enabling the largest collection of sleep and actigraphy studies in this age group in the world, combined with the same information on cohort parents".

Find out more about the Raine Study (external site).

Produced by

Research and Innovation Office