Consumer distrust in data sharing, poor digital health literacy and system interoperability problems are major challenges to the effectiveness and sustainability of Australia’s healthcare system, according to a new CSIRO report aimed at highlighting solutions.

Released on Wednesday, the Future of Health: Shifting Australia’s focus from illness treatment to health and wellbeing management report is aimed at shaping future investments in the health system to help shift the focus on illness treatment to health and wellbeing management within the next 15 years.

“While there has been a broad social shift, purposefully and inadvertently, to sharing personal information in other sectors, consumer trust can be rapidly eroded if the confidentiality, integrity, or availability of their information is threatened,” the report’s authors stated.

“In a survey of over 300 Australian health professionals, only 3 per cent said they trust data sharing in the medical industry.”

CSIRO recommended five actions to help overcome barriers to data sharing:

  • Build on existing initiatives to develop frameworks for improved health and medical data-sharing, with a focus on privacy-preserving techniques for patient data.

  • Improve healthcare networks and infrastructure, such that all new systems and upgrades are secure by design, promoting safe and effective information exchange.

  • Develop incentives for competing healthcare providers to collaborate on building cyber resilience into their systems, such as medical indemnity incentives or education credits for health professionals.

  • Facilitate data sharing by clearly outlining to consumers why, how and when personal health data is being collected, and what the intended outcome is (i.e. the value to the consumer who owns the health data).

  • Ensure comprehensive consultation of Australian stakeholders and communities in developing laws and guidelines around the ownership, sharing, and management of health data to account for ethical and cultural diversity.

Increasingly, digital and health literacy are becoming vital for patients to be able to access the best healthcare available, the report found.

“Almost 60 per cent of Australians aged 15–74 have a health literacy level that is considered inadequate,” CSIRO found.

“This challenge is compounded by a lack of digital literacy, with approximately 40 per cent of Year 6 and 10 students failing to meet a proficient standard of ICT literacy.”

Among the solutions CSIRO has proposed is to ensure AI-backed digital health initiatives use input data that is relevant to the intended target demographic.

“Most health apps in the market are designed for the masses and their underlying algorithms can be biased by incomplete training data that does not reflect minority groups,” the report states.

“Ensuring the design of these tools considers contextual information specific to the demographic it is applied to is essential.”

While acknowledging current efforts to develop national interoperability standards, the report stresses this is not enough.

“While Australia is not large enough to significantly impact international interoperability standards, it is important that governments, researchers, and businesses participate in discussions to ensure national planning and investment is aligned with global needs,” it states.

“Ensuring new health software adheres to standards around language, terminology, openness, and data security and privacy will help facilitate the effective and safe sharing of individual health data across Australian service providers as well as with international organisations.”

As well as highlighting the rapid global uptake of the Australian-developed FHIR, the report suggested three enabling actions on interoperability:

  • Invest in digital and data infrastructure to ensure digital health data can be transferred quickly and securely between and within health organisations.

  • Ensure Australian representation in international discussions around the global harmonisation of interoperability standards.

  • Develop strategies at the healthcare organisation level for a hybrid standards environment – aggregating data from a variety of systems.

The report also explores the value that can be unlocked from digital data, most pertinently by facilitating electronic health record engagement.

“The digitisation of the Australian healthcare system will go a long way towards improving integration and efficiency, but the shift needs to be more than just data sharing,” it states.

“It requires multidisciplinary and co-located teams and networks for improved decision making, treatment, and health management services.”

Suggested actions include:

  • Ensure EHR roll-outs involve clear value communication, are easy to use, have KPIs around usage, are interconnected, and are accompanied by education and training programs.

  • Develop outcomes-based funding models that incentivise health professionals to adopt and engage with novel system changes where the primary value is captured by other stakeholders such as consumers.

  • Investigate merits of developing legislation to allow patient/legal guardian ownership of data contained in EHRs.

  • Investigate how the digital health system can integrate with other sectors and systems, for example demographic and environmental data.

  • Invest in digital storage solutions to accommodate the future explosion in personal health data.

Download the full report here.

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