Health research starved of data

Denham Sadler
National Affairs Editor

The government needs to provide Australian medical and health researchers with better access to valuable data in order to improve the health of the population and cash in on $3 billion in potential savings, according to a new report.

In its report Flying Blind, the Digital Health CRC has called on the federal government to improve the availability of anonymised data to medical researchers in a secure and ethical way.

If done correctly, this could provide savings of at least $3 billion in the next 15 years, the report found.

“Only through embracing the expanded role of data in the health and medical research landscape and the support of a national mandate at the highest level can we achieve our shared goals of supporting the health system, delivering world-class healthcare and ensuring economic sustainability and success,” it said.

This is a “real and urgent’ issue, the report found.

“Consumer-driven transformations that have occurred in other sectors have not occured in health. We are flying blind. Clinicians practice without knowing the full context of their patients or their outcomes,” the report said.

“Care is generic rather than personalised. Funders pay for interventions of unproven or negative value. Consumers lack access to solutions and information that are commonplace in other aspects of their lives,” it said.

“Expediting access to health and medical research data is a real and urgent issue.”

The report makes a number of recommendations to improve the situation, including a harmonised process of data governance, data holding organisations, accredited release agencies, publicly-accessible protocols, a single national data rich access point and privacy, security and confidentiality placed at the forefront.

Current impediments to accessing data include the fragmentation of service delivery and data environment, complex funding and ethics approval processes, ad hoc policies and governance strategies and a lack of consistency overall.

“In spite of the abundance of digital data, Australian health and medical researchers spend several months and even years to assemble data required for their research. This has direct impact on advances in both health and medical science and the development of the health and medical technology and pharmaceutical sectors,” the report said.

“Current restrictive environment where Australian health and medical researchers face a myriad of problems as they navigate a complex environment enmeshed in legislative, ethics, and other barriers around data accessibility for research.

“Very often these obstacles result in long delays where research funding almost runs out, forcing many researchers to abandon linked data studies and make do with small data sets or seek overseas data banks to address their research questions.”

Ensuring there is privacy and security by design in the release of data to researchers will help avoid a similar breakdown of trust as seen with the recent rollout of My Health Record, the report said.

“The recent public response to the implementation of MHR is an indication of a lack of consumer trust with the way the authorities plan to implement the MHR. This lack of trust should not be confused with an actual breakdown in technologies that deal with privacy and security of data, access controls and safeguards around data protection,” it said.

“Ensuring transparency and clarity around data policies and processes is vital to building a trusted environment for the health and medical research sector to deliver real value to Australian healthcare consumers.”

The government has attempted to broaden access to public data with its Data Sharing and Release Act, which is currently before Parliament, but this does not benefit the health sector, the Digital Health CRC report said.

“While data from several sectors will be released, sadly the health sector is once again left out due to the unpreparedness of governments to establish trust and adopt a tech-savvy approach to tackle privacy concerns that are not necessarily shared by the Australian public, as evidenced by several consumer surveys,” it said.

Do you know more? Contact James Riley via Email.

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