National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016

10 November 2016

Mister Speaker

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. 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 but 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 the 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.