On 15 July 2024, the Australian Digital Health Agency (ADHA) brought interested parties together in Canberra to outline plans for a National Health Information Exchange (HIE).
With an encompassing vision that infuses and embraces technology, the Commonwealth’s investment in an HIE could improve health outcomes, reduce costs and grow Australia’s economy.
An HIE is a collection of services, technologies and interfaces that allow health information to move securely between providers and patients, organisations and jurisdictions, and a set of capabilities that support a nationally consistent ability to exchange data wherever it resides.
States and territories already use HIEs to connect IT systems, but the planned national HIE will create a national provider directory to connect patients, GPs, hospitals and other providers, facilitating patient engagement and clinical decisions by making more information available at the point of care.
We believe the HIE should also help to address the rising cost burden of healthcare and its negative consequences by reducing demand, improving efficiency, and helping to grow Australia’s economy.
The HIE could play a major role in reducing demand
Demand for healthcare is increasing, driven by an ageing population and chronic health disease burden. In NSW, the future health strategy predicted a doubling of demand between 2022 and 2032.
Australia does not have the budget to keep building new hospitals nor hire the people to staff them, so reducing demand is critical to maintain the high quality of care and outcomes that Australians expect.
Australia has the advantage of learning how other countries’ entities have handled rising demand. Fueled by value-based funding mechanisms, integrated health systems such as Kaiser Permanente use predictive analytics across linked datasets to predict deterioration and trigger early intervention.
This enables wellness, prevention and proactive care models that reduce expensive hospital admissions. In Australia, initiatives such as Lumos in NSW link GP data with hospital data to identify opportunities for improving patient outcomes and experiences across the patient journey.
The same data can empower patients to take greater responsibility for their own care, enable better outcomes and reduce demand through emerging technologies such as AI that nudges patients to take medications or adopt preventative behaviours.
A national HIE creates an unprecedented opportunity to generate real-world evidence to drive clinical care. With access to data, clinicians and hospital administrators can evaluate different interventions for current patients based on the results of those treatments on similar patients.
The HIE could be a changemaker in driving healthcare efficiency
In 2022 the Annual Healthcare Professionals Survey identified that 84 per cent of respondents experienced stress and pressure in the workplace, and Health Workforce Australia estimates there will be a shortage of over 100,000 nurses by 2025, whilst close to 11,000 additional GPs will be needed by 2032.
In a post-Covid economy, training and hiring more staff is restrained, so improving efficiency is a critical tool to allow more patients to flow through existing services.
Efficiency improvements can be made by reducing administrative tasks and enabling data driven innovation. Health services have started to implement platforms to drive innovation, use ambient AI to automate clinical documentation, and implement virtual care models.
However, innovation that supports integrated care, precision medicine using genomics data and health services research will require data across the continuum of care. The HIE could provide the source of such data and accelerate improvements in efficiency, without compromising care delivery, quality and safety.
The HIE could boost Australia’s economy
The Australian government has a strategy to promote small to medium sized companies (SMEs) and create a Future made in Australia, and boost the economy. Yet healthcare start-ups find themselves unable to connect with traditional health systems. 60 per cent of start-ups fail in Australia, and that number is higher in healthcare.Whilst health systems are incentivised to procure SMEs, the sector is reticent to use them due to perceptions of risk.
Tech innovations in other industries utilise application programming interfaces (APIs) that make data available to be used by apps in consumer-friendly and innovative ways. Whilst the new HIE will expose FHIR-based APIs through the Sparked on FHIR program, a holistic ecosystem design enabling entrepreneurs to engage directly with HIE data for 25 million people is needed. This would enable start-ups to connect and develop useful services to Australians, potentially exporting these technology-enabled solutions across the world.
A world-class HIE with diverse data sources could be a world-first, and springboard new ventures that would take the world by storm.
What is needed to make this happen?
To maximise the value of the HIE to Australian healthcare, we need to:
- Set up a multidisciplinary taskforce to consider the full potential of an HIE and to map out an evolutionary journey covering people, process and technology.
- Revisit the authorising and legislative environment for privacy and use of data in healthcare and standardise this across the nation: the privacy measures need to facilitate sharing without compromising the confidence that consumers place in their providers and ensure that particularly sensitive information is additionally protected.
- Secure as much data as possible to minimise bias, designing in data validation, ensuring patients understand the implications of ‘opting out’ and ensuring that data is captured consistently across all care settings.
- Establish permanent data and clinical governance processes and oversight at a national level to build trust in data and ensure that safety concerns are addressed before, during and after implementation.
- Enable access to data for real-world evidence and translational research and establish a national library of tested analytics and AI algorithms that can be accessed by all health systems and built on to avoid reinventing the wheel.
- Design the HIE, API landscape and related data infrastructure to be safely and securely accessible to entrepreneurs in a consistent way. For example, in addition to controlling access through compliance and contracting, a database of representative anonymised data could be used for commercial enterprises to trial new applications safely.
- Encourage the establishment of local provider networks that can utilise image, reports and atomic data via the HIE across care settings to develop and measure innovative care models that improve outcomes in their community, then facilitate learnings that can be shared with similar communities around Australia.
A clinician’s perspective 1: using real world data to inform research, clinical care and hospital policy
At Stanford Health Care, clinicians have access to years of electronic health record data from across their facilities, via an internal research platform that enables clinicians to quickly query de-identified patient level data. To turn this data into actionable insights, Stanford Health Care partners with Atropos Health to facilitate rapid publication-grade insights for multiple use cases.
This is one example of the way that healthcare systems are using real world data for research purposes. One use case is for researchers. They test their hypotheses and formulate more impactful research questions based on the real world evidence generated. Using this service cuts out hours of manual data abstraction by junior clinicians, and time wasted waiting for data access.
Another use case for clinicians is to effectively answer the question: for a patient that looks like mine, that was treated at our hospital, what were their outcomes? It is a powerful tool that will become especially relevant as the complexity of patient care increases.
There is a future world where the HIE links hospital electronic medical record data, primary and community care data and other data sources and allows clinicians to run rapid observational studies that are specific to the Australian population.
This could inform translational research that leads to improved standards of care in specific scenarios or specialties. It could also provide outcome data on treatments to inform prescribing and medications available on the Pharmaceutical Benefits Scheme.
A clinician’s perspective 2: using data to improve efficiency and outcomes
An HIE could drive efficiency and outcomes in several ways: by measuring outcomes, reducing burnout, and empowering patients.
Extracting data for measuring outcomes from multiple records is laborious. Programs such as the American College of Surgeons National Surgical Quality Improvement Program have the necessary standardised definitions and outcome measures, however this currently requires manual entry of records to ensure adequate data accuracy. In the future the expectation is for patients to contribute outcomes data.
The information would be shared with full consent and could include videos or photographs. A national HIE could drive data standardisation leading to more accurate and timely analytics with data from community records, labs, etc. This would greatly facilitate measurement of change based on small changes made at the front line.
The issue of clinician burnout is prolific in health care, so mechanisms for reducing administrative burden are needed. The HIE should facilitate workflow solutions to improve efficiency on the move, such as alerting via mobile phones; allow clinicians to seek and provide timely advice; and tailor information and linkages to enable them to rapidly make safe decisions and implement plans for specific patients. This would reduce the “information foraging” that clinicians spend so much time doing and contributes to their burnout.
The recent explosion in personal device data has vastly increased the data clinicians are expected to review and interpret. The burden and task for clinicians to make sense of these data is near impossible. Integrating device data with traditional healthcare data (EMR, practice management system and pharmaceutical) and allowing the data to be analysed by intelligent AI and large language models, would help synthesise the information and detect anomalies.
An HIE that allows connection of diverse data sources will ensure the HIE that is set up for the future.
A clinician’s perspective 3: how the HIE could enable small businesses to succeed in Australia
ScalaMed, a health tech start-up, was created in Sydney in 2016 to empower patients to hold their prescriptions in a portable prescription wallet. At the time, the infrastructure enabling real-time access to prescriptions and patients’ data (historic and real-time) was unavailable in Australia. ScalaMed moved offshore to the US where the infrastructure of patient data, and the amount of data available, was more conducive to innovation.
Innovators and entrepreneurs looking to start new businesses should be able to be successful in Australia and drive Australia’s economy.
Emerging large language models and other forms of artificial intelligence require masses of data for analysis across numerous sources. If made available via the HIE, with appropriate consents and controls, innovators and entrepreneurs could use diverse health data (from patients, devices, hospitals, GPs, allied health, specialists, public and private), combined with non-health data to unlock immense value for Australians and the businesses that will rely on them.
A future gazing HIE that enables the connection of data, even if not be perceived useful today, will become the engine for truly personalised healthcare service in the future.
About the authors
Dr Robin Mann, BEng MBBCh FAIDH trained as an engineer before qualifying in medicine in the UK in 1998. He is currently Fujitsu’s lead for health care consulting in ANZ.
Associate Professor Bhavesh Patel, MBChB FRACS FACS CHIA works as a senior paediatric surgeon in Queensland. He is involved in state and national systems change as the Queensland clinical lead for surgical quality improvement at Clinical Excellence Queensland and digital health roles within Queensland Health.
Dr Tal Rapke is an entrepreneur, physician and bio-pharma expert. His most recent venture as CEO and sole founder, ScalaMed, saw him create a smart prescription tech platform which he launched in the US.
Dr Honor Magon, MBBS, MS, is an Australian physician currently working in San Francisco as a medical director at Atropos Health. She was the first clinical informatics resident at Metro South Health, and was awarded a Fulbright Scholarship to study a Master of Science in Clinical Informatics Management at Stanford University.
Disclaimer: The views expressed in this article are solely personal to the authors, and do not in any way represent those of the companies affiliated with the authors, nor a relationship between companies affiliated with the authors.
