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Thursday, 24 June 2010
Page: 4414

Senator SIEWERT (5:56 PM) —This is just another example of the farce in this chamber this afternoon. We got a phone call asking if we would consider bringing the Healthcare Identifiers Bill 2010 and the Healthcare Identifiers (Consequential Amendments) Bill 2010 on and, in trying to facilitate the debate, I said: ‘Yes, I have amendments. I am happy to decide them on the voices and I won’t call a division. We will try and facilitate this getting through the chamber.’ About five minutes later we got another phone call saying, ‘No, it’s not coming on.’ I sent my staff home. Nobody had the courtesy to phone my office to tell me this bill was coming back on. In fact, I would not have known if I had not been in the chamber for the previous bill. Since when is that good government process? I could call a division right now on my amendment and you would not be able to finish this. It is only my good grace that prevents me from doing that.

Now I have that off my chest, I will address the bill. This is an important piece of legislation and it deserves to be treated better than this. This is setting up a system that is very important for the future of the health system in our country. It is quite controversial. This is the first bit of that legislation and e-health is very controversial. I realise that this is only an initial phase, but a lot of people see this as the thin end of the wedge, which is why we have been paying such close attention to this legislation. This bill sets up a national system for identifying healthcare consumers and sets out the purposes for which healthcare identifiers can be used. It establishes a national healthcare identifiers service to allow electronic communication between healthcare providers.

I know there remains a great deal of confusion as to whether this legislation is about electronic health records or creating the building blocks for the e-health system which is why people are anxious. This is why it is important for us to have a proper debate so that people actually understand the sequence, what the identifiers mean and what the electronic records mean. This deals with establishing the foundation of a future electronic health record. The Greens believe that universal data will contribute to reducing the incidence of misadventure, save costs and inform performance across our health system. In order to get to that point, we have to start somewhere. As such and with a number of caveats for the future development of electronic health records, the Greens will support this legislation.

However, it seems disingenuous to discuss the issue of healthcare identifiers without consideration of the wider issues of electronic health records, because this is the initial building block. The minister commented in her second reading speech:

The development of a national e-health system will improve safety and quality and patient convenience by ensuring that the right people have access to the right information at the right time.

               …              …              …

The implementation of a healthcare identifiers system for patients and healthcare providers is an important step towards building an effective national e-health system.

The first time many Australians will be aware that they have been assigned the identification number is when they visit a doctor’s office or a Medicare office and a staff member asks them for their identifying information.

In the UK, University College London has just released a report that evaluates the early stages in the development and implementation of electronic health records in the UK national health system. The report, titled The devil’s in the detail, highlights the differences between both sides in this debate. On the one hand, there is the view that centrally stored electronic summaries, accessible by patients and authorised staff, are a part of a broader common good. Advocates speak of choice, empowerment, quality, safety, efficiency and personalised care. The opposite view portrays policymakers as being seduced by a vision of technological utopia, professional leaders as being obsessed with standardisation, the public as being largely disengaged and the government as extending electronic surveillance into intimate parts of citizens’ lives. The problem is that both versions can, unfortunately, be backed up by evidence to some extent.

A unique electronic patient identifier, in conjunction with an electronic health card, was first advocated by the House of Representatives Standing Committee on Family and Community Affairs in 1997. The National Electronic Health Records Taskforce recommended in its report in 2000 that a national health information network be developed. The report cited the benefits of national health identifiers and talked about increased community safety, informed consumers being able to make better choices, better healthcare providers providing better health care, provider access to healthcare information, fewer diagnostic tests, improved warning systems, better planning and coordinated healthcare provision.

The National E-Health Transition Authority was endorsed by health ministers and set to work on e-health priorities. One of these priorities was the development of the patient identifier system, which, when combined with a product and medical database and national healthcare provider index, was to form part of the shared e-health record. In June 2009 the government’s National Health and Hospitals Reform Commission endorsed the directions proposed in the e-health strategy on the understanding that personalised health records remain at all times owned and controlled by individuals, who must approve access to these records.

The Senate committee inquiry into healthcare identifiers found that, while most who submitted evidence were supportive of identifiers, concerns were expressed around three themes: protecting the privacy of healthcare consumers from unauthorised access to their medical records; function creep, whereby healthcare identifiers start to be used for purposes other than that for which they were originally intended; and the implementation of the legislation by 1 July this year. It was widely acknowledged by witnesses and submissions to the inquiry that there was a need for a single healthcare identifier as proposed in the bills. In the words of one witness:

This is a fundamental building block that we know has direct payback, immediate payback, in terms of patient safety and cost reduction.

The Consumers Health Forum provided in their testimony a sense of the efficiency gains that a single healthcare identifier can bring for health consumers. The Nursing Federation also expressed support for healthcare identifiers.

Few witnesses or submissions disputed the concepts of healthcare identifiers and e-health. They did not dispute that they were likely to improve delivery and administration of health care in Australia. So it is not that people do not support identifiers; what they have concerns about are privacy and other concerns that I have listed. However, there remains confusion about what this initial piece of legislation does. The issue was identified by the Consumers Health Forum, which noted:

Many privacy concerns that were raised with us are valid … but they relate mostly to e-health records as opposed to individual health identifiers …

This debate is important so that people understand that we are just talking about the identifiers at the moment. This legislation does not allow access to patients’ records. All that further information comes through the e-health process. These bills cover only the creation of a national system to accurately identify healthcare consumers and healthcare providers. They do not allow medical and clinical information to be attached to an individual healthcare identifier—although it is not correct to say that these are unrelated concepts; of course they are.

The Privacy Commissioner emphasised:

Different privacy issues will arise if healthcare identifiers are to be used for expanded purposes within the national health system and if clinical information is to be associated, or held, with a healthcare identifier. In particular we would be concerned if healthcare identifiers could be used for expanded purposes without further consultation and Parliamentary scrutiny being required.

The Privacy Foundation was strongly opposed to the bills and claimed that the benefits to patients that were likely to come from the introduction of healthcare identifiers were outweighed by risks to individual privacy. The foundation asserted that the security of electronic information is difficult to guarantee and suggested that clinical staff may share secure information. These issues are all really felt by people and need to be addressed. If you talk to doctors, nurses and allied health workers, they are quite frank about the fact that they share logon details, passwords and patient records. I am not convinced that electronic health records are somehow less safe than what already exists. As was also pointed out during the Senate inquiry, there are currently privacy breaches in the clinical environment.

Some have argued that the risk to the privacy and security of information lies in the fact that health identifiers are being considered in isolation from future legislation. However, I am not convinced by that argument, which is why we are supporting the bills. We understand very clearly that separate legislation will be needed for e-health records. That is why, as I said, we are keen to make sure that we articulate that we have some concerns about e-health. I am not saying we oppose it; I am saying that there are issues that need to be fixed. We have spoken with the government about our concerns about privacy, which is one of the reasons I am putting up an amendment about opting out. This came up at the Senate inquiry, and the government said that it had looked into it and that it is too hard to opt out. However, they do it in the UK, which is why I will move an amendment. We understand that people do not have to use their identifier number, but people are concerned that there is a number against their name on the record. That still remains a concern for us—it is not the same as opting out—and that is why I will move the amendment. As people will be aware, I also have a second reading amendment, and if people read it they will see exactly the recommendations of the Senate committee report around the involvement of stakeholder groups as the system develops and as the implementation plan develops. It talks about publication of this plan before it is finalised and the development of a targeted education communication strategy.

We think this provides good safeguards around the identifier process and recommend it to the House. We will be watching the development of both this and the e-health process very carefully. We believe there are very strong reasons why we want to go to an e-health process, but there are concerns that need to be addressed. In supporting this we are saying that, yes, we support this first step but we have some concerns. We want to work through the e-health process very carefully and understand people’s particular concerns about privacy. If people are concerned about the privacy of their electronic records, they may actually be deterred—for specific illnesses—from seeking health care, and that is a very strong concern for us. We need to make sure those provisos are there. I move:

At the end of the motion, add:

   but the Senate calls on the Government to ensure:

(a)   the involvement of key healthcare stakeholder groups, including state and territory governments, private and community health providers, and healthcare consumer groups, in the development of a Healthcare Identifiers Service implementation plan which covers the period from now to 30 June 2012;

(b)   the publication of this plan for public comment prior to its finalisation; and

(c)   the development and implementation of a targeted education and communication strategy which targets both healthcare providers and healthcare consumers, and which clearly lays out the facts behind healthcare identifiers and provides contacts for people to access further detailed information. This strategy should be implemented prior to the Healthcare Identifiers Service coming into effect and no later than 30 June 2012.