I’ve known health minister Greg Hunt for over twenty years. When he is convinced about something he doesn’t hold back and jumps in, boots and all. It’s no surprise Hunt passionately defends the government’s personal healthcare data-sharing programme, My Health Record, becoming an opt-out scheme, with opting out only through a cumbersome, inconvenient and intrusive online process. This time he’s wrong.
Hunt inherited the opt-out legislation, but personally put it into effect after few people opted in since the costly scheme started in 2012. Even so, since July over a million Australians having defied the government and opted out through a process deliberately made cumbersome and intrusive, and a Senate inquiry raised further questions about My Health Record’s operation. In response, the minister this month announced new legislation better to protect the most intimate personal data we have – what we see the doctor about, our diagnoses and our treatments.
Even newborns are caught up. If you happened to have a baby on 15 November, the day the government’s opt-out amnesty period was due to end, the bub will be presumed to be getting a My Health Record even if you’ve already opted out; the authorities don’t encourage you to find out how you can opt the baby out too. Hunt’s proposed legislation doesn’t give one comfort for two big reasons: compulsory sharing of personal data is itself a fundamental invasion of privacy; and who can access My Health Record, and the conditions under which they do, still favour Big Brother’s interests over yours.
Hunt states, rightly, that My Health Record’s 2015 opt-out legislation had ‘unanimous’ support in Parliament. The recent Senate inquiry questioned aspects of its operation, but didn’t challenge the basic opt-out principle. But there is something fundamentally wrong about a supposedly Liberal government so enthusiastically promoting illiberal measures. A truly liberal party always should err on the side of upholding individuals’ privacy rather than attack it even if, as here, a government has honourable intentions in doing so. The forced opt-out approach to My Health Record is firmly in the Big Brother camp.
The aim of My Health Record is enabling doctors to see at a glance everything they need to know for your treatment, including medical history and the drugs you’ve been prescribed. It is supposed to promote greater healthcare efficiency and reduce risks of medical error. Unfortunately, Hunt’s legislative fixes don’t do enough to safeguard personal health details from improper access and abuse. Admittedly, it is good that specific abuse penalties and data protections for the most vulnerable, particularly for children traumatised by domestic violence, are being bolstered by the government. But if there must be a compulsory My Health Record by default, it should be only for access by genuine health professionals on a need to know basis, related specifically to your immediate healthcare. The proposed legislation doesn’t ensure that. You might only be having your ingrowing toenail fixed but your treating doctor, and his practice, has access to your full record even though it has absolutely nothing to do with what he’s doing for you. If he wants to have an improper gander at, say, your history of sexually transmitted diseases, he can.
Far worse, it is disgraceful that both major parties have no problem with My Health Record access for non-healthcare purposes by law enforcement agencies, security services and the Australian Taxation Office. Yes, Hunt is requiring court orders (but can judges be relied on to resist the likes of Asio urgently claiming a national security interest?), but it is still a gross intrusion, by the state, on the most intimate of your personal secrets. There is no reason whatsoever for the taxman to have the statutory right to pry into actual health records for data matching or any other purposes. He, and law enforcement agencies, already can access Medicare item records for publicly-funded healthcare services: they don’t need access to intimate clinical notes of conditions, diagnoses or treatments as well.
Questions also remain about protecting personal privacy when access is sought for research. University and government-funded researchers salivate at databases as rich as My Health Record. Saying they can only access de-identified data without your personal permission ignores the fundamental point that this is still your data, not a public swimming pool for researchers to dive into for up to an astonishing 130 years from your date of birth.
And are senior bureaucrats overseeing such access gamekeepers or poachers? Having been one myself, I simply don’t trust the bureaucratic mindset when it comes to justifying government and third-party access to personal information, and neither should you. Public servants are conditioned by their Yes, Minister culture to want as much information as they can get to help them do their jobs in whatever they define as the public interest: it’s simply the collectivist mentality of public administration to know all about you. This Big Brother mentality, which also contaminates ministers and MPs working in government, protects their interests, not yours.
The internet has connected mankind as never before, but the trade-off is our private lives have become far less private. Our personal healthcare records are about as intimate as we possibly can get: however well-intentioned Hunt and the medical fraternity are in spruiking a de facto mandatory My Health Record, we mustn’t take their word for it. We mustn’t surrender our own control of this most personal of our personal data to government agencies and bureaucrats.
The Senate this week moved to further extend the opt-out amnesty to 31 January next year, and Greg Hunt has agreed.
He and the medicos having so poorly sold the need to force Australians into its web, the minister has an obligation to keep the opt-out period open at the very least until his amendments become law and we all know where we stand.
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