Australia’s New Health Information Exchange: Challenges and Opportunities

By
Aurabox
October 14, 2024
#
min read
Photo of Chris

The Australian Digital Health Agency (ADHA) recently released a draft architecture and roadmap for a new Health Information Exchange (HIE). While the document outlines a broad vision for connecting healthcare providers through data sharing, it raises more questions than it answers. The lack of concrete details, especially around critical aspects of implementation, creates uncertainty across the healthcare industry. 

Four major challenges stand out: consent, readiness to share, industry implementation timelines, and the approach to medical imaging. Addressing these issues is vital to ensuring that the vision of seamless healthcare data exchange can become a reality.

Consent, Readiness and Clarity

A key challenge is the absence of a formalised, computable consent mechanism in Australian legislation, and a mechanism to enforce it. Without this, organisations are forced to err on the side of caution, often opting not to share data due to the high penalties for non-compliance. The result is an ecosystem where data sharing, when it happens, is done manually, and organisations fiercely guard their information.

Moreover, there is a significant gap in baseline knowledge across the industry regarding the requirements of data sharing under the Australian Privacy Act. Without clear guidelines and trust in a computable consent mechanism, organisations are simply not ready to engage in automated data sharing. Dropping a Federal Exchange into this environment won’t solve the problem—if anything, it may exacerbate the resistance. The introduction of computable consent is a crucial step that’s currently missing from the roadmap.

Another significant issue is the lack of clarity surrounding the core mechanism of the HIE itself. How exactly will this exchange function? The roadmap leaves fundamental questions unanswered. Is the HIE going to be a central exchange, a super-repository, a patient master index (PMI), a trust system, or a combination of these? Each model has vastly different implications for how hospitals and healthcare providers discover and access information.

For instance, discovery from a central exchange may be straightforward, but if the exchange relies on a patient master index and requires hospitals to query external sources, the process becomes more complex. The lack of clarity on such a foundational question is concerning and leaves the health tech industry in the dark about how to prepare for and engage with this system, which will lead to inaction.

This feeds into the issue of support and engagement with the ecosystem. Everyone who runs a data system in health will be affected. Even if the ADHA manages to implement the necessary systems within their optimistic timeframes, the ecosystem itself won’t begin work until after the ADHA has completed its part. Phases 2 and beyond of the roadmap rely heavily on organisations having actually implemented a significant number of complex and challenging system and data projects using technology largely unknown in Australia and standards mostly untested, which means that real readiness for data sharing may be delayed far beyond what the ADHA anticipates. To put it into context, the ADHA is proposing to deliver more in six years than what the US has achieved in 25, with significantly stronger legislative backing and time for industry to adapt. 

For example, the plan aims for discoverability by 2029, but only targets the delivery of eRequesting by 2027. It’s hard to see how full discoverability will be achieved in just two years, given the industry’s current state of unreadiness. A more detailed phased approach, outlining how the ADHA will support industry implementation, is crucial but conspicuously absent from the current roadmap. 

The Role of Standards and Working Groups

The relationship between the roadmap and the role of data standards working groups is equally vague. The plan mentions delivering “Baseline” eRequesting, but it’s unclear whether this refers to endorsing the SPARKED FHIR implementation guide—a document without direct operational impact—or something broader, such as developing repositories, policy, and guidance that organisations can actually use.

The ADHA has been almost completely missing-in-action on the SPARKED program, which should worry anyone interested in moving interoperability forward. With key parts of the ADHAs program dependent on that project, and components like the eRequesting "tokens" (meant to enable consumers to port their requests between providers) unlikely to be delivered without strong engagement, it’s difficult to see how consumer-mediated access to health information will be delivered in a meaningful way. As a co-chair of SPARKED, I’ve observed firsthand that the lack of progress in this area could severely hinder the success of the ADHA’s broader goals. Standards are a critical part of the process, but on their own largely useless.

This speaks to a broader issue the ADHA has with consultation. That they only advertised this consultation via a LinkedIn Post, and restricted "technical" feedback to 1000 characters on a webform, is indicative of the level of engagement the ADHA is currently managing. It really needs to step up its game here.

The Challenge of Medical Imaging

Finally, let’s get to medical imaging —a critical aspect of healthcare data that requires a completely different technical approach compared to other health data types, such as FHIR or CDAs. The roadmap glosses over this by seeming to infer - incorrectly - that being able to transact data about imaging by FHIR is somehow going to make that imaging available more broadly (if this is not how the ADHA is thinking, then you will have to forgive me for making the assumption, since there is no other information available).

This is an error I've seen people in the Government make on several occasions. There's talk of "wrapping medical imaging in FHIR" as a way to solve the problem, but this misunderstands both DICOM and FHIR. It's a clear sign that the person proposing the idea doesn't understand the technology, and it's bleeding through into the HIE strategy, which includes transacting FHIR ImagingStudy resources in Phase 3, closely followed by a "National DICOM viewer". FHIR and DICOM live in parallel but fundamentally incompatible technical worlds, and the HIE seems to get this wrong both technically and clinically.

While there are use cases where it’s fine to view imaging online, when it’s really needed for treatment it needs to be transferred to the treating organisation so that it can be accessed on specific software and equipment. This is clearly more than a viewer. This requires some kind of agreed sharing protocol, and there are only two possible options, DICOM and DICOMWeb. DICOMWeb is vastly superior for a number of technical reasons, but it's not a viable solution at a national scale, because while it is technically possible to provide endpoints for imaging using DICOMWeb, the entire industry uses the older DICOM protocol for sharing.

The DICOM protocol has several limitations that make it complex and difficult to integrate, including that generally it can only run over private networks, that it lacks any real authorisation and access controls, and that the metadata is limited and of low quality. It was essentially designed to allow imaging modalities to connect to PACS systems inside a network, and this makes it unsuited to the kind of open-world sharing required by a HIE. Any network to allow organisations to exchange imaging must support the DICOM protocol, however router-based DICOM networks do not support the level of consent, security, discoverability, or real-time access that are required by the HIE, without exposing the entire network to any user, which is plainly unacceptable. Nor do they provide any support for FHIR without extensive customisation.

In addition, a significant proportion of imaging in Australia is performed by specialists (over 1000 of the 1400 approximate providers), and these organisations usually lack the capability to integrate even at that level. They will require simplified, often manual ways to interact with the network. 

Moving Forward

The ADHA’s vision for an interconnected healthcare system is ambitious and necessary, but the current roadmap leaves too many critical questions unanswered. Until the issues of consent, readiness, industry timelines, and technical implementation are addressed in more detail, realising this vision will remain a challenge. The biggest gap is their vision for medical imaging, however, which is fundamentally flawed.

Aurabox, our solution for medical imaging exchange, actually solves these problems. Our platform supports DICOM and DICOMWeb, and even manual processes like direct uploads, connecting healthcare and imaging providers in a secure and scalable way. We are already on track to enable discovery for participating institutions within our network in 2025, without compromising the security of PACS systems, nor requiring providers to install additional software or modify their technical stacks. We can do this because we've built a platform for imaging exchange and discovery, not just a traditional DICOM network.

Aurabox is ready to be part of the solution, especially in the field of medical imaging. Our platform offers a technically advanced approach to imaging exchange that aligns with the needs of healthcare providers. We would welcome the opportunity to work with the ADHA and contribute to overcoming the hurdles in this challenging but essential journey toward true healthcare interoperability.

Christopher Skene is the Co-Founder and CTO of Aurabox, and a Co-Chair of the SPARKED eRequesting project.

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