Australian Digital Health Agency

The Australian Digital Health Agency (The Agency) was established in 2016 but was previously known as NEHTA (National E-Health Transition Authority), and prior to that as the National Supply Chain Reform Task Force (and it's five working groups). It is the System Operator of the My Health Record. The Agency, having provided the digital health record for 9 out of 10 Australians and more than 15,000 healthcare organisations, are also tasked to provide other digital health technologies and initiatives. [1]

In May 2018 it was announced that every Australian will be offered a My Health Record unless they choose not to have one during the three month opt out period that will run from 16 July to 15 October 2018. This was then extended until 15 November 2018. In October 1,147,000 had opted out, but the agency, and Greg Hunt declined to update the figure before the deadline. Those who wish to opt out subsequently can have their record deleted. The records cannot be released to police or government agencies without a court order.[2] Hunt subsequently extended the deadline to January 31 2019 and increased penalties for those who misuse the system, doubling the level of fines to $315,000 and increasing the maximum jail sentence to five years.[3] People could opt out via telephone, the My Health Record website or via various face-to-face options.

In November 2018 John Halamka, International Healthcare Innovation Professor at Harvard Medical School said that My Health Record was nothing more than “digitised paper" because it uses such out-of-date technology - PDFs, - that information on test results and diagnoses cannot to be read electronically. The Agency refuted this, saying that more than 100 clinical information systems were accredited to connect to it using structured data such as SNOMED and Australian Medicines Terminology codes for medicines. Halamka advocates the use of the Fast Healthcare Interoperability Resources application programming interface, which he says should be made a legal requirement.[4] It was developed by Grahame Grieve, who is the national Subject Matter Expert for clinical data exchange for the Australian National Health Record Program.[5] Grieve says that most of the data is actually in Clinical Document Architecture documents, with coded data embedded in them. But patients can only get a print out of the presented part of the CDA document which is, in effect, PDF. Clinicians can download the documents directly to their own systems which could extract the data but generally don't.[6]