Connected care is the theme of the Strengthening Medicare report that was released in February 2023, outlining a vision for Australia’s primary care system of the future. As we know, the way healthcare is delivered depends largely on how its delivery is funded, and to my surprise upon moving to Australia, it’s every bit as fragmented (if not more) for patients here as it is in the US. The Australian Digital Health Agency launched the Council for Connected Care (CCC) to “promote digital health initiatives that drive connected healthcare and identify barriers to achieving interoperability and ways to overcome them”. I serve on the CCC and lead the Standards Advisory Group that reports to them. The first in-person meeting of the CCC was held last week--I learned a lot about what the peak bodies (an Australian term for professional or trade groups) and healthcare leaders in Australia are thinking about standards. Under the Chatham House Rule, I share some of what I heard without attribution to any specific person.
The overwhelming message was this: standards don’t matter if there isn’t a way to securely send information to the care team (clinicians, patients, and carers). To improve continuity of care, three items from the ADHA Digital Health Strategy were prioritized in my breakout group:
Enhance consent management and flexible health information exchange to empower patients
Support access to healthcare so that everyone (regardless of their situation) can find the care they need and the information needed to be partners in their care
Monitor and evaluate outcomes and progress
The CCC should try to solve a real problem with standards and demonstrate an early win, such as making information available and understandable to the entire care team (again, including patients and carers) when a patient is transferred from hospital to home.
These are messages the ADHA seems to be hearing loud and clear from stakeholders, and I suspect these messages are driving initiatives that will roll out in the near future. With CSIRO, they have set up Sparked--a community comprising government, technology vendors, provider organisations, peak bodies, practitioners, and domain experts to accelerate the creation and use of national FHIR standards in health care information exchange. It is the first accelerator program outside of the US and the first one focused on non-hospital settings. Volunteers of all types welcome.
A few questions are being debated in my small circles:
How can patients control the exchange of their health information? Even if most patients will be happy about things like “sharing by default” upload of radiology and pathology exams into a patient’s My Health Record, there will be some people who do not want the information available to their care team. Patients won’t be the only ones to make noise if the government doesn’t get this right up front--providers from all corners will grab this as an excuse to defeat the worthy initiative. (For people outside of Australia, My Health Record is meant to be a patient repository for each Australian, but it differs from the patient portals we are accustomed to, because a major purpose is making information available to providers at the point of care -- that makes it much messier in my mind)
The government is doing extensive stakeholder outreach (such as the consultation on sharing by default). But like all other digital health initiatives, success or failure often depends on the details of the implementation. Setting up simulated testbeds is a good way to involve stakeholders early to surface unintended consequences, refine and validate before implementing, and gather early data and metrics. Which of the upcoming government digital health initiatives will benefit most from prototyping in a testbed?
As the government rolls out their interoperability plan, how will they monitor outcomes and progress towards connected care?
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