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Tuesday, 19 June 2012
Page: 3669

Senator MASON (Queensland) (16:57): The coalition opposition supports the Personally Controlled Electronic Health Records Bill 2011 and the Personally Controlled Electronic Health Records (Consequential Amendments) Bill 2011. A personally controlled electronic health record system is, let us face it, a very good idea. Any improvement to mankind's armoury against the empire of disease is a very good thing as well. Senators in this debate this afternoon have spoken about the advantages of such a system, and indeed it does have advantages. I accept that this system will assist in effective, efficient and timely patient care. I accept that this system will save time and allow medical practitioners to rely on information noted by other doctors rather than forcing patients to relay their medical history. I accept that the system could dramatically reduce the number of hospital visits each year. I accept that the system could also help prevent thousands of deaths annually when the system is fully operational, another significant advantage provided by e-health.

We also should not forget about the dollars. It is very important in these times of fiscal stringency to save taxpayer dollars. This system may well save billions of dollars over the next 10 to 15 years, by reducing duplication and errors, improving productivity and encouraging stricter adherence to world's best practice. These are all good things. I know that coalition senators and members such as Senator Fierravanti-Wells, Dr Southcott in the other place and Senator Sue Boyce have done a lot of work on this particular issue, and I want to congratulate all of them.

But the opposition does have some reservations. Once again we encounter the standard problem with this government. They come up with some very good ideas now and then, but that is often marred by lack of attention to detail and poor implementation. You will recall that it was the coalition that initiated the focus on shared electronic health records. But again this is a program that the Labor government has not fully developed. I listened before to Senator Di Natale and I loved his use of the words 'soft launch'. We now know that even though the system is being launched on 1 July this year, it is being 'soft launched', which I think means it will be quite some time before the system is ubiquitous. I think that is probably right. But I liked the language—slightly Orwellian, but it never gets by the opposition. We are not quite sure about the costs. The government has not been too forthcoming about the long-term costs of this technology. We know it is expensive, but that does not mean it is not worth it. Already it has been raised in debate that the United Kingdom spent about $12 billion on e-health records and that money has now largely been scrapped. It would not be a good thing for this government to go the same way. I am hoping the Australian Labor Party is not like the British Labour Party in this context—I am in a generous mood and so I will not assume it is.

An opposition senator: You always are.

Senator MASON: Yes, I always am! Some of my colleagues have raised the issue of stakeholder use and how some will see it as a make-work scheme for medical practitioners with little incentive to create the shared health summaries. That is a potential problem and of course there is a reliance on general practitioners to drive the uptake. Some have already asked this afternoon why would they bother doing that. It will take time, and they will see little or no reward for their efforts. Over time, perhaps, that will change, but, initially, I think it is fair to say, it will be an issue. My colleagues have raised—Senator Fierravanti-Wells raised it well and eloquently—the lack of stakeholder consultation. Reports from a number of key stakeholders indicate there was not thorough consultation and they had difficulty communicating with the National E-Health Transition Authority.

They are all important points, and I know that the Senate has discussed them well this afternoon. I congratulate all my colleagues for their contributions in this debate. But I want to concentrate on one particular issue, if I might. As Senator Polley just recognised—and I agree with her—health records are among the most sensitive records citizens give to a doctor, but governments potentially have access too. They hold potentially the most personal, sensitive information. So, of course, there are significant privacy concerns about these e-health records—about access, about their security, about their veracity, about the control over contents, the use and the potential use of these e-health records. All those issues are legitimate and they are all live in this debate.

This is one of those absolutely classic Senate debates because this debate reflects that most fundamental tension in regulating a liberal democracy—that is, the quest for individual autonomy and individual privacy on the part of every citizen versus the impulse of a community and social responsibility. That tension between the two—it is not a dichotomy; it is a tension—is being played out in this debate. While the government does have a moral responsibility to look after their citizens—and e-health is a very good example of that—citizens do not want the state to intrude excessively upon their autonomy in extracting that information. Somewhere in that tension lies the answer and lies the balance. Exactly where those boundaries should be drawn will always be widely contested and hence the privacy concerns raised by citizens about these bills.

The government is quite right to suggest, as they have this afternoon, that the government's decision to have an opt-in scheme—I remember discussing an opt-in or opt-out scheme a long time ago, Acting Deputy President Boyce, with you and others. But the government having chosen that—that is, people have to choose to register to have a personally-controlled electronic health record—it does raise the question of privacy protections. Privacy remains a concern, but with an opt-in scheme they are strengthened, and I acknowledge that. In my view the government should be congratulated for that.

Last week I happened to watch the 7.30 on the ABC—even though I am in the opposition, I do watch the ABC—with Professor Chris Puplick, the former New South Wales Privacy Commissioner, and he was asked about this legislation.

Senator Feeney: And former Liberal Party senator.

Senator MASON: Yes, and former Liberal Party senator and former President of the New South Wales Anti-Discrimination Board as well—appointed by a state Labor government. What he said was very interesting. He said that just like the internet, once the information is out there it will always be available to someone somewhere, regardless of restrictions and limitations. That, of course, is the problem. There is an oft-quoted saying among IT people that goes along these lines: information wants to be set free, but that does not mean that people necessarily want information to be free. Sometimes that is for good reasons—like patients wanting to protect their data—or sometimes for the wrong reasons, like authoritarian governments wanting to maintain their grip on power. It simply expresses the significant reality that once a genie is out of the bottle it is impossible to put it back in. When information is out, when it is set free, you cannot put it back in, because—guess what?—it is everywhere, particularly today with the promiscuous exchange of information, garnered by the internet, social media and other media enterprises. The fact is that these days information when leaked or when out is out forever. The information to be contained within this system is of an intensely personal and private nature, much of which may never leave the inner sanctum of a doctor's surgery. Given that the personal electronic health records system will, by its nature, exponentially increase the number of people with access to these details, it is not unreasonable for patients to fear that the risk of information being obtained by someone other than their doctor will also increase—and that is the concern. People are entitled to be concerned that their medical history could fall into hands in which it does not necessarily belong. Let us face it: in the profession many of us work in, the profession of politics, health records could devastate or potentially even destroy a political career. As examples take evidence of mental illness or evidence that someone is suffering from cancer or evidence that perhaps a woman at one stage even had an abortion or evidence that someone has contracted a sexually transmitted disease at some stage. All of these could be very embarrassing and would certainly be compromising and potentially they could destroy a political or a corporate or a legal or other career. That is why these records are so important and why their protection is absolutely and utterly vital. If they are released, even if they are released inadvertently, people would become subject to prejudice or subject potentially to blackmail. It could have detrimental impacts on their relationships, their work or their insurance and so on. There must be no unauthorised access.

It was not long ago, as you would recall, Madam Acting Deputy President, that we had the example of the stolen laptop in the United Kingdom, and this is not the only story of its kind. In about the middle of last year a laptop containing health information on over 8½ million patients and 18 million hospital visits, operations and procedures was stolen from a National Health Service building in London. The data did not contain names but it did include postcode, gender and age details. There were concerns at the time that the information could be used against the subjects by, for example, blackmail over sensitive medical issues and so forth. That is the sort of problem that is possible, hence the enormous concern as to privacy.

I note Senator Polley, when speaking before, mentioned the United States health system. The United States electronic health record system has been described as 'Wikileaks on steroids'. But while Australia's privacy laws generally do offer greater protection than do those in the United States, it is an interesting and concerning analogy for this kind of system. It is certainly a concerning analogy at least. Even with access to information by authorised users, so by those authorised to look at the information, there are still privacy concerns. Who owns the information? Can I change information that I deem to be wrong or inaccurate? Can I do that? Can I do that unilaterally? Can I restrict access by others to certain types of information? For example, I might not want my GP to know about my mental illness—

Senator Scullion: Or your drug addiction.

Senator MASON: Indeed, my drug addiction or some disease that I have contracted or whatever else. It could be embarrassing. Again, where do we draw the line? How does the regime in this bill interact with, in particular, the provisions of the Privacy Act, which, of course, is the ultimate protector of privacy in this country? All these issues are on the table. I accept what the government has said, that there will be at least a review of these issues in two years time, and again I say I think that is a very good thing because within that time of the next two years the true utility of this law can be addressed. I simply conclude by saying that for the good health of our nation I hope the government—for that matter any government of whatever political complexion—will address these privacy issues with very great discretion. Not to do so could lead to compromising of privacy and a shocking infringement of individual rights.