My Health Record: A Tale of Two Halves

Is My Health Record worth the risk?

 

It’s no secret that the Australian government’s foray into My Health Record hasn’t exactly gone according to plan. Media coverage around the topic has painted a picture of mistrust and political instability, which is precisely the opposite of what Australians need to hear when tossing up whether they should let their personal – and often very private – health data be left in the hands of the Australian government.

Further compounding this is an apparent lack of clarity around the topic (the top question Australians asked Google last year was “how to opt out of My Health Record”), forcing the government to push out opt-out dates and pass bills for stricter regulations and punishments for misuse. There’s plenty of information available on the My Health Record website about why this is a positive initiative (reducing admin load for doctors/hospitals, saving lives in emergency situations etc) and yet the media and experts are fixated on why (in its current form) it isn’t what Australia should be doing.

The question is: if we look past the bumps in the road, and focus purely on how such a system can benefit individuals and the wider community, do Australians think it’s worth the risk?

How are they really feeling about My Health Record, and what lies beneath this? Are people against it in principle, or is this a broader reflection of mistrust?

We know that it’s failed in other countries, so why are we ignoring the warning signs?

To answer some of these questions, in December 2018 we invited 1,300 Australians to share with us what they thought.

The truth is that when presented with the information, most (61%) agree that the benefits of My Health Record outweigh the concerns. This isn’t entirely surprising when you put it in simple terms: most (2 in 3) can latch onto the fact that not giving doctors the ability to access their health data in an emergency is likely more of a risk than the prospect of their data not being secure.

Yet at the same time, most (2 in 3) agree that the risk of cybersecurity breaches, third party access/misuse of data and uncontrolled data sharing is extremely concerning. You can see the quandary Australians are faced with here.

In theory, Australians think it’s a good initiative, but in reality, the overarching view is that the Australian government is too poorly equipped to be taking on such a responsibility. Our research shows that just 1 in 3 feel confident in the Australian government’s ability to protect their data, and just 1 in 3 have faith that the government will actually do so. Whilst it’s impossible to say for sure, this may be in part due to how events have played out during the My Health Record roll out, combined with broader doubts about the Australian government’s ability to make the right decision (a latent effect of the 2017 Census debacle perhaps). On top of this, the Facebook Cambridge Analytica scandal and other key events meant that 2018 was already a big year for data privacy concerns. Mistrust is an at all-time high, and Australians are understandably on the defence. Tighter rules and regulations for MHR may be a nice band-aid solution for now, but the Australian government’s reactive slant isn’t instilling a great deal of public confidence long term.

As the January 31 opt out deadline looms (at least until further notice), where does this leave Australians? Our research shows that as at December 2018 a third had either opted out or intended to opt out, a third hadn’t nor intended to opt out, and perhaps most interestingly, after all this time, a third were still undecided.

This isn’t entirely surprising given the Australian government has played its cards pretty close to its chest. Whilst there’s been plenty of talk about My Health Record in the media, as at December 2018 half of Australians had either never heard of it or knew very little about it. For something that is “opt out” in nature, thus placing the onus on individuals, a 1 in 2 strike rate isn’t a great result.

The good news is that most are turning to the official My Health Record website for information, but reliance on other “unofficial” sources is also high.  The reality is that for Australians to gain an informed opinion and make the decision that’s right for them, it’s up to the individual to seek out both sides of the story. This is where things have gotten murky. Misconceptions around who has access to data are worrying (25% think insurers have access), and we can thank the media for that, but by this point, who really knows the truth?