There is no social licence for My Health Record. Australians should reject it

A three-month countdown clock alerted many Australians this week to the government’s progress on a massive, mandatory health data centralisation scheme. Known as My Health Record, the scheme compulsorily enlists all Australians into sharing their health information, unless they opt out before the deadline of 15 October 2018.

Swiftly, a vehement public debate has erupted, pitting reasonable arguments in favour of digitisation and linked-up medical care, and equally reasonable arguments about hazards to reliability, privacy and security when records are taken from the physical offices of one provider and made accessible and vulnerable over digital networks to hundreds of thousands of others.

One of the most devastating and under-discussed flaws in the scheme is that it opens access to health data to a slew of parties beyond primary care providers. To understand this, it is important to know something about the scheme’s principal proponent, Tim Kelsey, who led a remarkably similar initiative in England, care.data, which collapsed spectacularly for failing to bring along the public, destroyed institutional trust, and was subject to a series of damning independent reviews.

A former journalist, entrepreneur, and government adviser, Kelsey left England in September 2015 at the height of the care.data controversy. He moved to Australia and initially joined Telstra Health, which had just acquired Dr Foster, a health data analytics firm that he cofounded in 1999. Then in July 2016, he took over the helm of the newly created Australian Digital Health Agency, the ADHA, which was to promote the historically-underperforming Personally Controlled Electronic Health Record under its rebadged name, My Health Record.

While current messaging about My Health Record has emphasised the undoubted merits of healthcare providers having up-to-date patient information, Kelsey has repeatedly characterised the scheme in very different terms. The government’s intention is “to harness the power of the modern information revolution to empower and enable clinicians to offer industry and entrepreneurs and innovators a new platform for delivery of new services”, he said in an interview last October.

“It’s about creating new industrial entrepreneurial opportunities for great apps developers over here; existing large vendors over there – to engage with the public estate, to transform the experience for citizens in England [sic],” was his message to the Committee for Economic Development of Australia.

Industrial entrepreneurship over health data is a world away from the understanding of GPs who have created records for several million Australians to date under quota-based incentive arrangements that, along with two large trials, account for those who already have a My Health Record (and which puts paid, incidentally, to the notion that those who have opted-in have done so of their own volition).

This difference of mission, between a tool for seamless information flow between patients and their healthcare providers, and a platform for industrial entrepreneurship, isn’t a mere detail – it is absolutely fundamental. And it demonstrates a grave and irresponsible miscalculation by the ADHA: one that becomes inexcusable given what should have been learned from the catastrophic English experience.

In their eagerness to increase uptake of My Health Record, Kelsey’s team secured legal authority last December to flip the scheme from opt-in to opt-out. But in doing so they ignored a core lesson from care.data, namely, the “enduring truism” that “legal authority does not necessarily command social legitimacy,” as explained in a superb analysis in the Journal of Medical Ethics. “A parliamentary majority may allow legislation to be passed,” the authors state, “but that does not equate to a societal seal of approval or to securing the trust and confidence of patients, citizens, healthcare professionals and researchers.”

The ADHA’s bullish approach jeopardises the legitimacy of the entire scheme, and it also accentuates the staggering disconnect between the move to commit all Australians to a system that will hold their data for their lives plus 30 years, and the degree of uncertainty about how that data will be used, by whom, and for what.

The framework for secondary use of health data under My Health Record has only just been made public. Its details are vague, but what is clear is that it exposes Australians’ health information to a potentially staggering array of interested parties, either in de-identified form (a hugely problematic notion, given the intrinsically personal nature of medical information) after linkage with other datasets (say, from Facebook or Google), or in identified form in ways that can be buried deep in the terms of service of third-party apps.

An example of one of the apps already accessing information from My Health Record was revealed by an ABC investigation last month. Health Engine, a booking service part-owned by Telstra Health, has been passing sensitive health information to personal injury lawyers – precisely the kind of opportunistic “entrepreneurship” that would be anathema to patient expectations.

It is staggering that an Australian public service has moved to centralise its citizens’ most intimate and sensitive information without first securing a social licence. We should signal disapproval by opting out (if proven, there is always a possibility of re-joining), but we should also advocate that it is entirely unacceptable to cede the collective interest through reliance on individual action.

In the meantime, the default settings on existing My Health Records has caused serious security concerns in that it allows for secondary use of information and must be changed to avert catastrophe. It was fatal to care.data that it could not prove that it was only about patients and their immediate care. The same conclusion manifestly applies to My Health Record – Australia should refuse it.

• Julia Powles is currently visiting UWA Law School and is a former contributing editor and policy fellow at the Guardian