Flying Blind: Australian Consumers and Digital Health

Volume 1 of the Australian Health Data Series, produced by the Health Market Quality Research Program of the Capital Markets Cooperative Research Centre (CMCRC), examines how health data created at the point of service flows, or fails to flow, as Australian consumers move through the health system. The authors map the consumer journey across primary, secondary, public and private hospital, allied, community and aged care services, review the transactional data each provider creates, and identify gaps that inhibit continuity of care. The report finds acute fragmentation of consumer health data, driven by the mix of public, private and non-government providers, multiple funding and payment channels, a proliferation of consumer identifiers and coding schemes, and inconsistent state and federal laws governing health data. As a result, consumers, clinicians, policy makers, funders and researchers lack a complete picture, a situation the authors characterise as market failure. Citing Research Australia’s 2016 polling, in which 91% of Australians were willing for their data to be used for research, the report argues that consumer attitudes are ahead of current policy. It calls for an urgent national initiative that treats point-of-service data as the core resource, positions consumers as owners of their health data, takes an iterative and lightly engineered approach, and gives a national body, possibly the Australian Digital Health Agency, the mandate to lead implementation.