I also rise today to speak on the National Cancer Screening Register Bill 2016 and the related National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016. As Senator Polley has said, these bills together seek to establish a national cancer screening register which will replace the national register for the Bowel Cancer Screening Program and eight state and territory registers for the National Cervical Screening Program.
In principle, Labor supports this initiative. As someone who has been very active in raising funds and awareness for cancer prevention, I am an enthusiastic supporter of any initiative that may help to save the lives of cancer sufferers. While my fundraising and advocacy has been mainly focused on brain cancer—a cause that I think most people in this place realise I am particularly passionate about—I understand the importance of cancer screening to detect and treat cancers early, and even prevent them when possible. While this register will currently hold data relating to two forms of cancer, I recognise the potential for it to be expanded to other forms of cancer. To me, it makes sense to have a national approach to keeping cancer screening records, removing the duplication caused by having separate state and territory registers and allowing GPs to see a patient’s entire cancer screening history, even if the patient has moved states. I have read in the minister’s second reading speech that the bowel screening registry is paper based, which is clearly outdated and not suitable for the 21st century.
Not only is this a unified national approach but the new national register will enable improvements to cancer screening programs. For example, the National Cervical Screening Program will move from a two-yearly Pap test to a five-yearly cervical screening test and the Bowel Cancer Screening Program will be increased to two-yearly screening for Australians aged 50 to 74. The increased screening is expected to prevent an additional 140 cervical cancers a year, and also to prevent 300 to 500 deaths a year from bowel cancer. Essentially, this is about better access to information. It is surprising the impact that improved access to health information can have on the prevention of illness and, ultimately, saving lives.
As a general principle, investment in the early detection of disease and the secure sharing of information amongst treating professionals can lead to better outcomes in treatment and prevention. And I have argued in this place before for an expanded screening program for haemochromatosis, a disease which can be expensive and debilitating if left untreated, but which could potentially be easily detected and treated if we invested just a little bit of money. I am in no doubt that these improved cancer screening programs will save many lives and prevent a great deal of suffering. I am also hopeful that, at the same time, they will take pressure off our acute care system, as earlier detection can lead to cheaper and less invasive treatments.
But while Labor support these bills in principle, we do not support outsourcing the register to Telstra. In an election campaign where the privatisation of Medicare was front and centre as an issue—and it was no doubt an issue on which the government lost a fair bit of skin—I am surprised that those opposite still have not learnt their lesson. Prior to the election we heard the Prime Minister say at least 27 times that his government would never outsource Medicare. Yet this is exactly what these bills do—they put Australians’ Medicare numbers and Medicare records in the hands of a for-profit multinational corporation.
Members of this government complained bitterly after the 2016 federal election about Labor’s claims that they had plans to privatise Medicare. This government doth protest too much, because what they were really upset about was being found out. Despite their protestations about Labor’s campaign—despite their Federal Director Tony Nutt’s dummy spit at the National Press Club and their frontbench’s confected cries of foul play after the election—the Abbott-Turnbull government’s actions confirm time and time again what Labor has been saying about their privatisation agenda. After all, actions speak louder than words.
The government’s decision to award the contract for the National Cancer Screening Register to Telstra adds to a string of evidence that they cannot be trusted to keep Medicare in public hands. We know that this government established a 20-person $5 million Medicare privatisation task force. We also know that this government told the Productivity Commission to investigate privatising all human services, including Medicare. On Monday, in the House, we had another show of the government’s true colours when it comes to the issue of Medicare privatisation. They were called on to support Labor’s motion for a guarantee that Medicare be kept in public hands as a universal health insurance scheme. Given the opportunity to demonstrate a commitment to public health care—to keep Medicare in public hands—not a single Liberal MP supported the Labor motion. In addition to voting against the privatisation of Medicare, Liberal MPs in the House of Representatives also voted against a guarantee: to protect bulk billing; to reverse their harmful cuts to Medicare by unfreezing the indexation of the Medicare Benefits Schedule; to reverse their cuts to pathology and diagnostic imaging that will mean Australians will pay more for tests and scans; to abandon their plans to make Australians pay more for vital medicines; and to develop a long-term agreement to properly fund our public hospitals to reduce emergency department and elective surgery waiting lists. The Liberals’ failure to support our motion just goes to show that they cannot be trusted with health care, and they cannot be trusted to keep Medicare in public hands.
Our opposition to the privatisation of Medicare is based on concerns about extremely sensitive health information being handed over to a private, for-profit provider. But if the government presses ahead with its plans to award the contract to manage the national register to Telstra, this is what will happen. This is an extraordinary move. The existing registers that this new national register will replace are all managed either by government agencies, or, in the case of Victoria and South Australia, the Victorian Cytology Service—a not-for-profit organisation set up specifically to operate such registers. The information the government proposes to hand over to Telstra includes an individual’s Medicare number; their Medicare claims information; the name of their preferred GP or health provider; whether they have been vaccinated for human papillomavirus, or HPV, as we know it; their cancer screening test results; and their diagnosis for bowel or cervical cancer. The explanatory memorandum to this bill reveals that Telstra will also know whether a person has a precursor to cancer, or genetic markers that may lead to cancer. They will also know whether a woman has had a hysterectomy and whether a person who identifies as a man is a biological woman and has a cervix.
If this arrangement goes ahead, it would be the first time that a for-profit corporation has been given responsibility for managing a sensitive cancer screening register. Not only does Telstra not have prior experience in managing such sensitive information, but their record when it comes to protecting customers’ privacy with the information they do manage is, to say the least, questionable. As recently as 2013, Telstra had to issue a formal apology to customers after phone numbers, names and home addresses were found online during a Google search. While Telstra said that the privacy breach was ‘not acceptable’ they had actually been investigated by the Privacy Commissioner for two data breaches in the three years prior. In a 2011 breach, the details of almost 800,000 Telstra customers were left online for eight months, available to anyone via Google. Several stakeholders, such as the Australian Healthcare and Hospitals Association, have expressed concerns about Telstra being awarded the contract. The Australian Medical Association, in their submission to the Senate inquiry, expressed concern about ‘the risks associated with awarding a contract of this magnitude to a company that has no direct previous experience in undertaking such a task’.
Given the bills open up the possibility for other cancer screening programs to be included in the register in the future, could this provide an opening for the government to sign more contracts with Telstra and allow them to take on more data—adding to the privacy risk? To quote David Vaile, the Executive Director of the Cyberspace Law and Policy Centre at the University of New South Wales:
Telstra … is a strong proponent of big data, of open data.
They’re obviously a commercial operation—they’re often seeking to use personal information for uses beyond what it was originally collected for and to push the limits of privacy and data protection law.
I find it rather outrageous that, prior to the last election, the government would sign a $220 million contract with Telstra to operate the register, despite not having passed the necessary legislation. Now the government is scrambling to pass this legislation retrospectively, having already bound Australian taxpayers to this contract, without public scrutiny or consultation.
Having not seen the contract with Telstra, it leads the parliament and the Australian public to wonder what implications it has for the way the register will operate. A number of people and organisations in the health industry and in the medical profession have expressed concern about the lack of consultation with doctors, patients and other stakeholders about the development of the national register. The secretive manner in which the government awarded the contract to Telstra, without having the enabling legislation in place, raises serious questions about whether this government can be trusted to manage this process or protect the privacy of patients.
When Labor and the crossbenches referred these bills to a Senate inquiry, do you know what the Minister for Health and Aged Care said? She accused Labor of a ‘hysterical tirade’, but the inquiry has revealed some very real concerns about the privacy issues raised by these bills. Even the government’s own privacy and information commissioner has raised six concerns about the bills and made recommendations to fix them.
One of the most embarrassing loopholes in the legislation is that it allows the register to collect all Medicare claims information for people who are on the register, not just the claims information that is relevant to bowel and cervical cancer screening. This is one of the worst examples of the kind of rushed, sloppy drafting that has exposed the government’s failure to take proper care to protect and safeguard the privacy of patients.
Last week, Labor proposed nine amendments to improve the legislation. Consistent with the recommendations of the privacy and information commissioner, Labor’s amendments would: limit the Medicare claims information that may be collected by the register to information that is relevant to bowel and cervical cancer screening; require the register operator to report data breaches to affected individuals and the commissioner, similar to the My Health Records Act 2012; require compliance with the framework for research that is established by the Privacy Act; provide that a breach of the national cancer screening register bills is also a breach of the Privacy Act, so that individuals have recourse to the privacy commissioner; limit the purpose of the register to anything that is directly related, not incidental, to the other purposes; and use the terminology ‘opt out’ rather than ‘opt off’, for consistency with the My Health Record system.
We also proposed three amendments to strengthen the penalties for data breaches. Various stakeholders have called for a review of the fine for offences to ensure they provide an appropriate deterrent, including those who are generally supportive of these bills. For example, the former secretary of the Department of Health, Stephen Duckett, said:
The automatic consequences of release of data—inadvertent or not—must be made so great that any risk-management matrix will ensure the organisation and its managers always have patient privacy at the forefront of their mind.
Labor proposed to increase the penalty for unauthorised use or disclosure of information from 120 penalty units, or $21,600, to 600 penalty units, which is currently $108,000.
Under the Crimes Act 1914, a court can impose a penalty up to five times this amount on a corporation. As such, if Telstra are the register operator they could be fined up to $540,000 for a data breach. We are talking here, after all, about a company which—let us not forget—made a $2.1 billion profit last financial year. Another amendment would clarify that these penalties apply to the unauthorised use or disclosure of key information as well as protected information. Key information includes details such as a person’s name, address, contact details, date of birth, Medicare number and HPV vaccination statement, which are not explicitly protected by the penalties in the government’s bills as they are currently drafted. A third amendment would make it explicit that the Commonwealth is the custodian of the data in the register.
Despite accusing Labor of a hysterical tirade when we moved to address the legitimate privacy concerns, I understand that the government now proposes to move a series of amendments that meet many of our demands. However, in their rush to get this legislation through the parliament, the government still cannot get it right and their legislation is full of holes. As such, Labor will be moving three amendments that the government has refused to accept. These are: our amendment to limit the operation of the register to a government agency or not-for-profit organisation, an amendment to require individuals to be notified when their sensitive health data is breached and an amendment to increase the penalty for unauthorised use or disclosure of information on the register.
With regard to the second of these amendments, we understand that the government has at least accepted Labor’s amendment to ensure that the privacy commissioner is notified of breaches. The way the bills are currently drafted, Telstra is only required to tell the Department of Health if there is a breach of their private health data. But that is not good enough. Individuals deserve to be notified if their sensitive personal information is breached. It should not be up to the Department of Health or the privacy commissioner to have to tell them.
Once again, I reiterate that Labor supports the principle of these bills. It makes sense to have a national cancer screening register, and I am looking forward to the improvements that this will bring to cancer screening—particularly as it will result in saving lives. But, once again, this process has been rushed, and it has fallen to Labor to clean up the mess that has been left by the government’s shoddy drafting of these bills.
Despite the government insisting that the legislation had to be passed in the last sitting week without scrutiny, Labor and a Senate inquiry have exposed serious flaws in the way the bills were drafted. This has been the consequence of the government’s desperate rush to get this legislation through the parliament. Labor understands that the contract with Telstra is for five years, with an option for a 10-year extension, so if parliament gets it wrong, we may not be able to revisit our decision until 2031. The government would not be in such a rush to pass this legislation if they had not—in their arrogance—stitched up a deal with Telstra behind closed doors four days before calling an election. An exposure of serious flaws in these bills shows that the referral of the bills to a Senate inquiry was indeed necessary to make sure it had proper scrutiny. If it was not for that inquiry, the government would not be scrambling to fix their drafting errors.
In addition to their amendments, we call on the government to also accept the opposition’s amendments. Through our proposed amendments Labor are standing up for Australians and the protection of their sensitive personal health information, and we are standing up to this government’s move to privatise Medicare. On Monday the Turnbull government had an opportunity to demonstrate their commitment to keep Medicare in public hands. We know they have failed that dismally. Today, they have another opportunity: they can abandon their contract with Telstra; they can support Labor’s amendments to these bills; and they can ensure that the sensitive personal information of patients listed on the national cancer screening register is not handed over to a multinational for-profit corporation. If they fail to do any of that, they will be thumbing their noses at another opportunity to oppose the further privatisation of Medicare for the second time in as many days.