"My [electronic] health record"-cui bono (for whose benefit)?

We examine the operation of Australia’s national electronic health records system, known as the “My Health Record system”. Pursuant to the My Health Records Act 2012 (Cth), every 38 seconds new information about Australians is uploaded onto the My Health Record system servers. This information includes diagnostic tests, general practitioners’ clinical notes, referrals to specialists and letters from specialists. Our examination demonstrates that the intentions of successive Australian Governments in enabling the collection of clinical data through the national electronic health records system, go well beyond statutorily articulated reasons (overcoming “the fragmentation of health information”; improving “the availability and quality of health information”; reducing “the occurrence of adverse medical events and the duplication of treatment”; and improving “the coordination and quality of healthcare provided to healthcare recipients by different healthcare providers”). Not only has the system failed to fulfil its statutory objectives, but it permits the wide dissemination of information that historically has been confined to the therapeutic relationship between patient and health practitioner. After considering several other purposes for which the system is apparently designed, and who stands to benefit from it, we conclude that the government risks losing the trust of Australians in its electronic health care policies unless it reveals all of its objectives and obtains patients’ consent to the use and disclosure of their information.