According to its website, the “My Health Record is a secure online summary of your health information. You can control what goes into it, and who is allowed to access it. You can choose to share your health information with your doctors, hospitals and other healthcare provider.”
Although the Federal Government has spent a great deal of money on developing the My Health Record system, the outcomes have been somewhat disappointing. The Department of Health regularly publishes statistics that show a continuous increase in use but these don’t include more meaningful metrics such as documents accessed. Health providers are sending documents to the system but is anybody actually reading them?
None of the information about usage reflects the kind of outcomes that were intended when the system was designed. The government continues to invest and is moving rapidly towards national opt-out but clinical views of the system have remained generally negative. (See, for example, comments by the AMA, Jeremy Knibbs at the Medical Republic, or David More’s blog).
Many of the current issues are due to the inherent design of the system. Consider the architecture:
In this architecture, healthcare providers push CDA documents into a single document repository. Patients can ‘control’ the record only by changing the visibility of documents to “hidden”. Healthcare providers can browse through the history of CDA documents for the patient.
What’s missing from this picture is any idea of a coherent system. Enterprises don’t automate their systems by collecting a huge pile of PDF documents. They do collect documents but they are not what automation is built from. Healthcare providers can’t leverage this collection of documents to build coordinated care solutions and patients can’t use them to manage their care.
These limitations have been designed into the system, based on the standards that were available at the time. Hard decisions had to be made in order to meet the government’s original, politically imposed deadline.
However, scaling up this system (including to national opt-out) won’t resolve these problems. In fact, it will only increase them.
And the government’s fixation on the My Health Record is holding back the general progress of digital health in Australia, sucking up all the oxygen from the innovation ecosystem and leaving little air for solutions that improve care coordination, drive patient safety or increase the efficiency of healthcare delivery.
So what can the government do address these problems?
Fortunately, there is a way forward. The US government has taken quite a different course, requiring EHR system vendors to provide open APIs, and ensuring that patients and providers can access their health information directly.
These open APIs in healthcare are known as the ‘Argonaut Interface’, named after the project under which US vendors collaborated to design the interface. These APIs allow patients and providers to create managed and coordinated care processes.
One such use is for the Precision Medicine Initiative (AllOfUs). The outcome of these policies is a system that can do lots of things, although the solutions don’t scale very well. Yet.
Australia can have the best of both worlds. A centrally funded and properly governed national EHR that fosters scalability, along with a flexible architecture that can allow providers and patients the ability to control their information, and where vendors can build the solutions their customers actually want.
Making this change happen is straightforward in concept: change from the current design, where the provider systems create documents and push them to the central repository to one where the provider systems make information available through an Argonaut Interface, and then, with patient consent (whether opt-in or opt-out), information is replicated up to the central repository, as shown:
The key change is that the infrastructure on which the My Health Record depends — health identifiers, exchange standards, the patient consent framework, and the policies that support the system — enable an infrastructure that can be used for multiple solutions, instead of serving a single government-imposed and limited system.
For Australian vendors, this would be a welcome opportunity to invest in infrastructure that serves their customers and helps compete in the international market, rather than investing in interfaces to a solution with no wider benefit. Now is a particularly good time for that given US vendors are preparing to make their Argonaut interfaces available in Australia.
Beyond that, a system based on this architecture is one that can grow beyond the limitations of the current CDA-based system and support, for example, a curated medication list. Most of all, however, the real beneficiaries of this system redesign would be Australian health consumers, who could start interacting with a system that serves their needs based on future international standards for healthcare data.
Grahame Grieve is the Principal of Health Intersections, and a healthcare Interoperability consultant and developer