The My Health Record debacle and the need for trust in communications

The rush by the public to opt out of the Australia government's digital health record program is a reminder for crisis managers and PR professionals that effective communication demands a framework of trust, writes Issue Outcomes' Tony Jacques.

It’s no secret that citizens don’t trust governments. Yet that lack of trust has seldom been so manifestly evident as when the Australian Government solemnly promised to safeguard the nation’s most intimate and personal health data.

The public rarely get the chance to exercise their distrust of government – except in the political framework of an election. But that opportunity arose recently with the start of a three-month period for people to opt out of My Health Record, a centralised registry of personal healthcare information designed to improve healthcare through better access to data by primary providers and researchers.

It was also an opportunity for issue and crisis managers to be reminded that effective communication demands a framework of trust, especially when dealing with real or perceived risk.

That was the challenge facing the Australian Digital Health Agency. The privacy and security threats were blindingly obvious from the start, not helped by a worrying catalogue of government data breaches, like when hackers offered Medicare Card details for sale on the dark web last year. As Ellen Broad of the Open Data Institute wrote at the time: “It just got a whole lot harder to trust government with our data.”

More recently, health data was hacked in Singapore, and the Australian Information Commissioner has just reported 59 data breaches in the healthcare sector in the last five months.

Little wonder that on the very first day of the opt-out window, more than 20,000 people got online to register their distrust in the system, despite the platform crashing under the unexpected demand. Moreover, distrust turned into shock when some people attempting to tell the government they did not want a My Health Record found they were among almost six million Australians who already have such a centralised file, most of them completely unaware.

Of course a high level of distrust is not new, is not just a problem for governments, and is not confined to Australia. The 2018 Edelman Trust Barometer – a global survey of 33,000 participants across 28 countries – showed that in Australia the four major institutions – government, business, the media and Not-For-Profits – are all now officially classified as distrusted for the first time since 2013, with some of the lowest numbers in the world. The survey showed that trust in government at 37% is the lowest of the four categories. Edelman Australia CEO Steve Spurr concluded: “It is deeply worrying that a majority (56%) of Australians believe their government is broken.”

Criticism of the My Health Record project has been widespread – including from legal academics concerned about reliability and security, mental health bodies fearing potential discrimination if patient data leaks, and doctors worried data might be handed to police without a warrant. Soon the Government was forced to announce new protections.

This case is a good demonstration of how community and professional distrust can have a real impact on major public issues. And it also reinforces that trust is an essential prerequisite for effective issue management.

In 2016 the UK Government was forced to scrap a similar scheme to centralise records of all NHS patients because of inadequate safeguards. Dame Fiona Caldicott, Chair of the official inquiry into the failure, reported: “Building public trust for the use of health and care data means giving people confidence that their private information is kept secure and used in their interests. Citizens have a right to know how their data is safeguarded.”

The government then responded that it was vital full consultation and dialogue with the public and professionals takes place to establish that trust before implementation. As the Australian experience shows, the word ‘before’ may represent the difference between success and failure.

Tony Jaques, Director of Issue Outcomes Pty Ltd, originally published this opinion piece on his Managing Outcomes site. It is republished with permission.



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