Mike Freelander (Macarthur, Australian Labor Party) Share this | Link to this | Hansard source

I rise today to speak on the National Cancer Screening Register Bill 2016 and the National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016.

As someone new to parliament but a long time in the medical profession I have to admit that delving into these bills has been a bit of an eye-opener. Like any fair minded or perhaps slightly naive person, I was willing to give even this government the benefit of the doubt on setting up a single national cancer screening registry for bowel and cervical cancer. Although proposals for separate national registers for these two and other forms of cancer—principally breast cancer—have been around for a long time, I was not much fussed that the government seemed keen to claim the lion's share of the credit for advancing the single-register concept.

Clearly, there are not unsubstantial benefits to be had in improving how we monitor government programs that have a major impact on national health and wellbeing. No-one disputes that. It is also very important epidemiologically and having got across the legislative history—principally the delay caused by the government's decision to call a double dissolution just three days after these bills were first introduced into parliament—I could see why the health minister might be inclined to cut a few corners off the parliamentary process to get these bills passed, so that the proposed national register can be up and running by the target date of 20 March 2017.

I was also prepared to set aside my concern that this House was being asked to consider these bills before members had had a chance to consider fully the findings and recommendations of the parliamentary committees that are or soon will be examining them—for example, the Senate Committee on Community Affairs, the Parliamentary Joint Committee on Human Rights and the Senate Standing Committee for the Scrutiny of Bills. It has not escaped my attention either that the constitutional footing on which these bills rest seems a little unsure. That too appears to concern the government, when you turn up the multiplicity of savings provisions that make up clause 15 of the principle bill.

The government's position on that potential pitfall and others might also have been better or more fully explained that that was not a deal-breaker either. Perhaps the minister was not able to access advice from the Solicitor-General. One never knows.

It was troubling that the government had not seen fit to even outline the detailed rules that will govern the operation of the proposed registry. Yes, I know that many of those rules will ultimately turn up in delegated legislation, which either house can disallow; I would just prefer that it did not come to that. Likewise, I did not see the package, in and of itself, as fatally compromised by the limited stakeholder consultation. Consultation is still extremely important.

I did think too that now might also be a good time to move to a national register for breast cancer screening—though here, to be fair, I was reassured by clause 12 of the main bill, which seems to be drafted to allow the scope of the proposed register to be broadened in the future. Such future expansion may well, though, need a specific amendment to the definition of a designated cancer in clause 4 of the bill as presently drafted.

The Australian Privacy Commissioner, who is also the acting Information Commissioner, has joined in criticism of the bills, remarking on the thinness of some of the bills' privacy protections and the lack of clear and unambiguous information-handling requirements. Again, I would still, all things being equal, have seen those possible failings as more of a case of 'do in haste and repent at leisure' than anything sinister.

More troubling, though, was and is the somewhat imperfect compromise struck by the principal bill in balancing privacy protections and any cost imperatives with allowing ready access to data sets for legitimate medical, social and academic research. On that point, I agree with the Australian Healthcare and Hospitals Association's submission to the Senate Community Affairs Committee inquiry on the bills, where it says:

It is important that the data to be housed in the National Cancer Screening Register are made appropriately available for clinical research and also to understand the incidence of cancer in our society, the way we fund the care of people with cancer, what it means in terms of the funding and organisation of our health system. This will allow researchers, clinicians and policymakers to ensure health policy is evidence-informed.

… … …

Without the clinical perspectives and the opportunity to conduct data linkage with other health data sets made possible through collaborative efforts such as this, the value of the National Cancer Register will not be fully realised. It is not yet clear if Telstra Health will be required to provide the cancer data they will hold to agencies such as Cancer Australia and the AIHW, in particular, who have important national roles in the collection, management and reporting of cancer statistics. It is important the Commonwealth clearly outlines who will be responsible for analysing these data, how often will this be done, whether the reports be made public and who will ensure the validity of the results.

The new regulatory regime must promote, and not inhibit, genuine efforts to improve the understanding and treatment of bowel and cervical cancer. In short, on the above criteria I would have given the bills a bare pass mark. The minister had some explaining to do, but you felt that ultimately you could live with what was being proposed, given the probable benefits, which are huge. I think that that is the point that most fair-minded people would have got to. Everyone was trying desperately to love these bills, even if our love was qualified.

But then, regrettably, the minister has invited us all to go one step beyond. The minister, on top of the foregoing litany of missteps and loose ends, now also asks us to accept—again, with very little explanation—that the National Cancer Screening Register ought to be run by a private, for-profit company with limited—virtually no—experience in the health field, Telstra Health. In fact, rather than asking the parliament for its view, she simply went ahead and did the deal. To ice that particular cake, it transpires that Telstra Health, the successful tenderer, was awarded the prize less than a week before the by then much-anticipated double dissolution election was called by the Prime Minister, with the tender outcome announced only after the pre-election caretaker period had commenced. This is not a good look.

Details of the contract between the government and Telstra health remain incredibly sketchy. As the Parliamentary Library's excellent Bills Digest says, the explanatory memorandum is unclear on the value of the contract to Telstra Health. It necessarily follows that the ultimate net cost of this latest outsourcing exercise to the taxpayer is also presently a complete mystery. Telstra Health's substantial submission to the Senate Community Affairs Committee is likewise completely unenlightening on the terms of the contract.

Personally, I am not one who believes that public services must always be provided by the public sector, but I am always wary of the monetary and other costs of outsourcing. There is truth, I suspect, in the old saying that a consultant is someone who borrows your watch to tell you the time. Some things do not add value; they just cost a lot more. The profit motive is not always corrosive. It can in some instances, particularly in health care, undermine or reduce the quality of public services. There are services, too, that even delusional conservative governments have come to understand cannot be left to the market without incurring a moral hazard. Private prisons, however badged, are a case in point.

In this case the tender process which locks this and future governments in for five years is not so much poorly explained as barely mentioned at all. As the AMA said:

There has been a lack of transparency around the process for awarding this contract ...

It then added:

The AMA would be more comfortable with it being operated by Government, a tertiary institution, or not-for-profit entity that has little interest in how the data in the register might otherwise be used.

I agree. Why—one cannot help but ask—was no part of the federal bureaucracy considered up to running the register? Has the federal Public Service been reduced to such a level of institutional anaemia that it cannot do its core work anymore? Was the APS even allowed to tender? It would be a perfect fit for Medicare, to enhance its ability to provide data. I have noted, too, the Community and Public Sector Union's submission, which sensibly points to the employment consequences of centralising the proposed register in Melbourne and denying jobs to other states such as Tasmania and South Australia—two states that traditionally struggle to provide enough work for their residents.

It is simply unacceptable—and this is the bottom line for me—to contemplate researchers, Commonwealth and state instrumentalities, charitable bodies and other agencies paying for or having to beg for access to information and data that they need in their daily work of protecting and improving the health and welfare of all Australians. That really would be one step beyond.

As I was preparing this speech I was confident that I would not be the first member to remind the government of Prime Minister's post-election conversion to the idea that his party had much to do to establish public trust in it on matters of health policy. To quote the Prime Minister from a 5 July joint media conference with Nationals leader Barnaby Joyce:

That is a very clear lesson. We have to do more to reaffirm the faith of the Australian people in our commitment to health and to Medicare. [We] have to work harder to rebuild or strengthen the trust of the Australian people in our side of politics when it comes to health. There is no question about that.

Well, 101 days after the election none of the government's Medicare cuts have been reversed. This would have been a perfect opportunity for the health minister or the Prime Minister to affirm their commitment to Medicare. And now we have these bills.

When the British Prime Minister says she does not want her party to be tagged with the label 'the nasty party', at least you get the impression that she may know what she is talking about. With this government, the reflex to be 'the nasty party' on health is so deeply ingrained that they do not even know when they have gone that one step beyond. Those 5 July words of contrition are already sounding pretty hollow.

This bill is deeply flawed. The legislation for a national cancer registry is vitally important. In my own work and in the work people will be doing in the future this is really important. I am sorry that this bill this so flawed.

Steve Georganas (Hindmarsh, Australian Labor Party) Share this | Link to this | Hansard source

I rise to speak on the National Cancer Screening Register Bill 2016 and to support the amendments put forward by the member for Ballarat. I think Australians have a right to be a little bit concerned and a little bit worried about the way this particular bill was brought about. The National Cancer Screening Register Bill is a real example of why we should be concerned about Medicare and health and the way that this government goes about its business in this area. But let me be clear that we support the establishment of a national cancer screening register. It is really important that we have good register, a national register, and I make it clear that we support a national cancer register and also support the improvements to the cancer screening programs that the new register will support.

We know that cancer touches the lives of many Australians, not only those affected directly by cancer, but their families, their carers their loved ones and everyone who is connected to them. It is a major health problem in Australia today. According to the Cancer Council, at current rates it is expected that one in two Australian men and one in three Australian women will be diagnosed with cancer by the age of 85. An estimated 130,500 new cases of cancer will be diagnosed in Australia this year. We know that cancer is the leading cause of death in Australia. More than 44,000 people died from cancer in 2013. It is a good thing that we live longer but one of the problems is that more people develop cancer in older ages. Around 19,000 more people die each year from cancer compared with 30 years ago.

So we clearly have a responsibility to do everything in our power to ensure that Australians have the best possible care, the best possible services and the best possible systems in place. That is why Labor supports steps that increase the efficiencies. The proposed register is meant to replace nine existing registers. It is good thing that we are coming up with one national register to replace nine different registers, including, for example, the national register for the National Bowel Cancer Screening Program, and as many as eight state and territory registers for the National Cervical Screening Program.

The proposal has merit because it will reduce duplication and improve the prevention, identification and treatment of cancer in Australia. It is an excellent thing that a doctor or GP will have access to a patient's entire cancer screening history, regardless of whether they live in my electorate in South Australia or they have moved from one state to another or have been away for a while. It is an excellent thing that they will have this history.

A further reason for supporting this national register is the improvements that will flow to our 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. Not only does this implement one of the recommendations made by the independent Medical Services Advisory Committee, but it is also estimated that it will prevent an additional 140 cervical cancers per year. That is 140 lives that it will touch and benefit.

In addition, as a result of the national register, the National Bowel Cancer Screening Program will transition to screening people every two years at a much faster rate than previously proposed. This means that Australians aged between 50 and 74 years will be screened every two years by 2020 instead of 2034, as previously proposed. The research and clinical trials tell us that this change could prevent an estimated 300 to 500 deaths per year, and that is a good thing.

All of these proposals make sense. They clearly improve screening and diagnosis and they make it easier for practitioners, GPs and those involved in the health system to do their job. But what we do not support is the outsourcing of this new register to a massive multinational for-profit corporation. That is what we do not like. Certainly, when I speak to people and tell them that the information in this register will be held by a multinational, they do not like it either.

So let's cast our minds back to the election campaign of 2016. On 26 May Fairfax Media broke a story that the government had awarded Telstra the contract to operate the national register. It was then revealed by AusTender that Telstra and the government had in fact signed the contract on 4 May. That is four days before the Prime Minister, Malcolm Turnbull, called the election. The government signed the contract for the operation of a national register despite the obvious fact that the necessary legislation to establish that national register—the legislation we are debating here today—had not yet passed.

What does that tell us? It is further proof that Australians have every right to be worried about such sneaky measures. Following the Fairfax story that broke regarding this contract, the Department of Health then issued a press release defending the contract. Was this a breach of the caretaker conventions? Who knows. If Australians have nothing to worry about, why the need to defend the contract? Why keep it a secret? So it is imperative that this parliament does its job and carefully scrutinises both the concept of a national register and also whether it should be operated by Telstra, a big, multinational, for-profit company. And there is a very long list of justified concerns. These have been echoed by many of my constituents and others in this place, as well as the shadow minister, the member for Ballarat, and they are clearly reflected in the damaging losses suffered by the coalition government at the last election when it came to health and Medicare.

For example, the new register is designed to hold extremely sensitive information about every Australian who is eligible for the cancer screening programs. This information will be held by a multinational, for-profit corporation. There have been many speeches made in this place and many inquiries into some of the practices and errors that are made by Telstra on a regular basis. This information will include people's personal details, names, addresses, contact details, dates of birth and gender. The information will also include the private health data, including an individual's Medicare number, Medicare claims information, preferred GP or other healthcare provider, HPV vaccination status, screening test results and cancer diagnosis. I have to tell you, I would not feel comfortable with Telstra or any multinational, private company holding that information about me, and I am sure many Australians would not feel comfortable about that either. We accept that this information is necessary for the operation of a register, but not with a massive multinational.

According to the government's own explanatory memorandum, Telstra will also be provided with very sensitive information, including whether a person has genetic markers that may lead to cancer, whether a woman has had a hysterectomy or partial hysterectomy or whether a person is transgender. But what are the implications of taking the step, unprecedented in Australia, of handing over such sensitive information to a for-profit, multinational company? Will Telstra be given access to even more information down the track that we will not be aware of or do not know about? As I said earlier, Telstra has a questionable record of privacy breaches. How will they protect, how will they safeguard, Australians' most private and most sensitive health information? Surely our voters, the Australian public, deserve to ask such questions and have them answered honestly.

What are the bigger implications of a contract of this size on our public healthcare system—a system that Australians are so rightly proud of? We have one of the best healthcare systems in the world. And what are Australians to make of this constant backtracking and denials by the government that are proven wrong? Let us not forget that at least 27 times during the election campaign the Prime Minister, Malcolm Turnbull, said that he would never outsource Medicare. But isn't that exactly what these bills do—outsourcing to a for-profit multinational company? They put Australians' Medicare numbers and Medicare claims information in the hands of a multinational telecommunications corporation. If that is not outsourcing, I do not know what is.

So let us be clear: if we are not careful, this can open the floodgates to privatising our entire health system, and the government appears determined to do just that. For example, We know that the government spent $5 million trying to privatise the Medicare payments system. Now they want to pay Telstra to store Australians' most sensitive health data. The government's cuts to health care are an attack on our health system and continue to shift costs from Medicare to patients. This is privatisation by stealth.

For all these reasons, Labor proposed nine amendments to improve the government's legislation. After accusing Labor of a hysterical tirade, the government is now amending its own legislation. But there are three amendments that the government refuses to accept and that we will not give up on. Firstly—and I am sure the shadow minister will speak on these in detail—we are going to proceed with our amendment to limit the operation of the register to a not-for-profit organisation or government agency. This will address those risks of giving Australians' most sensitive health data to a telco corporation that has never managed a register like this. The existing cancer screening registers are managed by governments and not-for-profit organisations that have expertise in managing the registers. But Telstra has never operated a register like this. Is it sensible to be trialling something that has never been done with such sensitive data? That is the question. It is a worry, quite frankly, especially when we consider the types of data and information that they will be holding on the Australian public.

Today during question time we heard the government side talking about text messages about Medicare. Well, here is proof. This is absolute proof that we are privatising parts of our health system. When I look back over the past three years at the government's track record on health, all I can see is that on a number of occasions they tried to bring in a copayment and when that failed, because of the Senate, they then tried to bring it in through the back door through a freeze on doctors' payments. All these things play on the minds of the Australian public. No wonder they have absolutely no confidence in this government when it comes to health, when it comes to Medicare.

Again, seeing some of the most sensitive data that we have being given to a multinational telco company to run and to hold, is another example of the way we are heading with health.

All of us on this side want to support a national register for cancer, because we know it is a good thing. But we want that information to be secure. We want to ensure that the Australian public has confidence in whoever holds that information and we want to ensure that there will be no accidental release of information, as we have already seen with previous data that Telstra has held. I support this legislation, and certainly with the amendment the opposition has brought to this House.

David Gillespie (Lyne, National Party, Assistant Minister for Rural Health) Share this | Link to this | Hansard source

The National Cancer Screening Register Bill 2016 creates a new legislative framework for the establishment and ongoing management of cancer screening registers. This bill will establish the National Cancer Screening Register, which will support changes to the National Cervical Screening Program to be rolled out from 1 May 2016. The national register will also support the expansion of the National Bowel Cancer Screening Program, which is critical in the fight against bowel cancer. A number of amendments to other legislation are required once the National Cancer Screening Register Bill 2016 receives royal assent to enable certain information to be provided to the register. These are described in the National Screening Register (Consequential and Transitional Provisions) Bill 2016. Not only will the national register provide an efficient approach for these two key national screening programs but it will also future proof Australia's approach to population based screening, as it will have the ability to be expanded to other cancer screening programs in the future.

The bill provides a principle based legislative framework to support the government's policy objectives of supporting Australia's health system to meet current and future challenges. The bill will lay the foundation for future work to move towards a national integrated system that captures and reports on individual screening tests and results of relevant follow-up procedures up to and including the diagnosis with cancer or precursor to cancer.

I thank members for their contributions to the debate on this bill. This bill will serve to benefit the health of Australians through more efficient cervical and bowel cancer screening pathways made possible by the establishment of a national register that will facilitate the monitoring of the effectiveness, quality and safety of screening and diagnoses associated with bowel cancer and cervical cancer. The register will also assist general practitioners and healthcare providers in their clinical decision-making, contributing to cancer detection and treatment and cancer prevention in Australia.

Debate interrupted.