Despite an abundance of digital data in Australia, health and medical researchers are spending “several months and even years” when it comes to assembling data required for research, a recent study has found. 
 
The Australian Researchers and Digital Health Australian Health Data Series: Volume 2 report identified that Australia holds high-quality, well-coded and valuable digital health data, but is not tapped to its full potential. 
 
This has led to a direct impact on advances in both health and medical science, and the development of the health and medical technology and pharmaceutical sectors, it indicated. 
 
“Australian consumers are willing to share their health data to support research,” it was stated in the report. 
 
“However, this is not reflected in the current restrictive environment where Australian health and medical researchers face myriad problems as they navigate a complex environment enmeshed in legislative, ethics and other barriers around data accessibility for research.” 
 
With the responsibilities for health research dispersed across several different entities, including government departments, hospitals, universities, independent medical research institutions, as
well as for profit and not-for-profit institutions, this fragmentation has resulted in data silos.  
 
The report further outlined that these obstacles tend to result in long delays, forcing researchers to abandon linked data studies, make do with small data sets or seek data from overseas to address their research.
 
“Delays are caused by a range of factors. The fragmentation of health services delivery across primary, secondary, hospital and allied healthcare settings produces an equally fragmented data environment,” it stated. 
 
 
“Further barriers are embedded in a health and medical research ecosystem comprised of complex funding and ethics approval processes, ad hoc policies and data governance strategies that differ across state and federal data custodians. 
 
“These processes and policies lack consistency and are often not transparent to researchers, causing inordinate delays in getting necessary approvals and access to health and medical research data.” 
 
What needs to be done? 
 
According to the report, there are a number of steps that need to be taken to build a health system based on preventative, precision medicine. 
 
Using advances in data analytics and computing power to break down large datasets is an important resource. 
 
“These are often datasets that are routinely collected for another purpose – eg for healthcare claims administration – but contain enough detail for researchers to use for valuable secondary analysis. These datasets are often large, pre-existing and longitudinal,” the report stated. 
 
As such, these datasets should be used to understand trends, patterns and correlations at a larger scale and enable healthcare researchers to investigate a range of questions more rapidly and cost effectively than using methods such as surveys and clinical trials. 
 
Ensuring transparency and clarity around data policies and processes is also vital to building a trusted environment for the sector to deliver on value.
 
“Consumer-driven transformations that have occurred in other sectors have not occurred in health. We are flying blind. Clinicians practice without knowing the full context of their patients or their outcomes,” the report stated. 
 
“Australia needs to embrace a nationally consistent, streamlined approach that embeds privacy, security and confidentiality by design. The privacy by design approach needs to encompass the use of data as well as data products such as analytical and predictive models that have the capacity to support preventive and precision healthcare.” 
 
 
The report also examined the need to address current arrangements for funding and ethics approvals for a more streamlined process that is reflective of modern research techniques. 
 
“These data, ethics and funding arrangements must also be underpinned by a legislative and policy environment that supports a culture of data confidence for all stakeholders. This would enable us to move from a protective and closed culture to one of data sharing and release to authorised researchers,” it stated. 
 
“Through an integrated approach that incorporates lessons learnt overseas with the particulars of our Australian context, we can support the ecosystem and realise the full potential of data-enabled health and medical research.” 
 

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