Health Records and Information Privacy Act: Disallowance of Health Records and Information Privacy Regulation 2006
HEALTH RECORDS AND INFORMATION PRIVACY ACT: DISALLOWANCE OF HEALTH RECORDS AND INFORMATION PRIVACY REGULATION 2006
Debate resumed from an earlier hour.
Ms LEE RHIANNON [4.36 p.m.]: This is terrible public policy and, in all likelihood, will be so offputting to the general public that the course of electronic health records will be set back many years. I have no doubt that when the general public catches on to what the Government is up to there will be widespread anger and fear. I do not base my views just on my own opinion or the many conversations I have had with worried constituents; I base my views also on research undertaken by AC Nielsen for NSW Health in 2001. The final report provided to NSW Health stated that those polled raised the following issues: the potential for discrimination, patients' lack of control, the potential for misuse of data and the adequacy of security. Honourable members should remember that this poll was conducted before the requirement for consent was deleted. Even with consent explicitly required, people identified those issues as serious concerns. Yet the Government dismissed those concerns as out of hand and blundered ahead. It is poor policy from a Government that is losing the plot. The Carr-Iemma Government should abide by its own regulations. On this issue the Health Records and Information Privacy Act 2000 clearly states:
An organisation must not:
include health information about an individual in a health records linkage system unless the individual has expressly consented to the information being so included
In a letter dated June 2002 Mr Chris Puplick, the then Privacy Commissioner, stated:
However I am of course concerned that the introduction of both legislation and policy in this area must ensure the most stringent protection of the privacy of health information possible.
The importance of those comments is underlined by the fact that the misuse of medical records is at the top of the list of complaints to the New South Wales Privacy Commissioner. When the Minister for Health claimed in a press release on 21 February that the Healthelink trials would be "in accordance with health privacy laws" he was not accurate. If the trials were in accordance with health privacy laws, there would not be any need to seek an exemption or for the regulation we are debating today. Hence, we have had this furtive gazettal of the regulation, which must be disallowed. The present format of electronic health records is not in the public interest and the Government should redesign the pilot program and produce a consent form. It should also attend to who can access the records, apart from the person concerned, and how. It should look at the latest security software. The Greens are not opposed to an electronic health records system, but we are opposed to this badly designed system, its misuse and the fact that people cannot make an active choice for their personal medical records to be included.
We must also consider what might be driving NSW Health's desire to run the system as a compulsory environment. It appears that the information and technology vendor-supplier consortium the department contracted to develop Healthelink has a big role to play. I have received this information only recently, and I believe it is extremely serious. It throws into further question the way in which the Government is conducting this so-called trial, which really is the first stage of the implementation of the system. The Greens have found out that NSW Health is dealing with Health Communications Network, a company that supplies software to general practitioners. That company was the subject of a privacy scandal last year. It was discovered to be extracting patient data from general practitioners' computers and selling it to pharmaceutical companies without the patients' knowledge, and in some cases without the general practitioners knowing.
The Hon. John Hatzistergos: What has this got to do with anything?
Ms LEE RHIANNON: I acknowledge the Minister's interjection. Again, we have a Minister for Health stumbling in the handling of his portfolio. Surely he can see the link that the company the Government is engaging to work with Healthelink has acted in a most improper way and compromised privacy. If that does not worry the Minister, we have more problems than we thought we had at the beginning of the debate.
The Hon. John Hatzistergos: Who told you this?
Ms LEE RHIANNON: I am about to provide a bit more information. According to an Orion report, the controversial switch by NSW Health to the opt-out patient consent model was based on the consortium's recommendation. That information was revealed in the information technology section of the Australian yesterday. This is a most serious addition to the debate. I urge honourable members to consider it very carefully. The Government is engaging in a full-on race to get this up and running. I remind honourable members that it is not a trial; it is a roll out of the first stage; it is another Government con job. The Government is claiming that it is consulting and conducting a trial. That is not true; it is well down the track towards implementing this system.
I urge honourable members to support this motion, not to prevent the establishment of electronic health records—far from it—but to send a message to the Government that it must do better. It should go back to the drawing board. Privacy is an important right that should not be trifled with and confidence in the public health system is essential. This regulation imperils both. I look forward to hearing the Minister's comments and finding out how serious he is about privacy, let alone these records.
The Hon. JOHN HATZISTERGOS (Minister for Health) [4.44 p.m.]: I will start my contribution by quoting Tony Abbott, the Federal Minister for Health, who in 2003 made a significant speech on e-medicine. I do so to ensure that honourable members are aware of what he said. Tony Abbott said:
One of the most significant causes of preventable death is inappropriate treatment based on ignorance of patients' previous medical history. Analysis of the 1994 study suggests that 9 per cent of preventable deaths result from communications problems and 11 per cent result from poor record keeping. In other words, accurate information about patients' medication, allergies, previous treatments, past illnesses and health characteristics could be a decisive factor in saving up to 3600 lives every year.
He further said:
The challenge is connecting systems and linking information in ways which enhance patients' control over their own health records and facilitate the best possible medical treatment.
The Healthelink electronic health record will create a lifetime electronic record of all care provided in public and private health settings. It is an integrated record that translates into improved safety, quality and efficiency of health care. That can be achieved by giving the right information to the right people at the right time. Honourable members should distinguish the need from the basis of much of this debate. A number of honourable members have questioned the need for this system. Ms Lee Rhiannon has attempted to camouflage her opposition by appearing to support an electronic health record, but not the model the Government has proposed. This is not a compulsory system.
Patients can choose to participate in the system. The Government's proposed model has been carefully considered, not over the past 12 months, but some time before that. I will refer in a moment to how the opt-out model was developed. The decision to trial an opt-out model was made during the early stages of the project when research on international experience in the United Kingdom and Canada identified significant problems with the use of an opt-in model and when community consultation identified high levels of support for this initiative. Honourable members should be made aware that the Alberta Government in Canada was forced to repeal legislation requiring an opt-in approach to electronic health record because it was found to be unworkable. Indeed, its Office of the Information and Privacy Commissioner supported the repeal of section 59 of the Alberta legislation which, until that point, contained an opt-in model. The decision to trial an opt-out model—
Ms Sylvia Hale: You should repeal your Act; you should not hide behind a regulation.
The Hon. JOHN HATZISTERGOS: Hold on a moment! The Act sets out principles and allows for exemptions from those principles. A regulation has been drafted in an open manner providing for an exemption from a principle. That is what we are debating today.
Ms Sylvia Hale: How can you have a principle from which there are exemptions?
The Hon. JOHN HATZISTERGOS: The legislation which the honourable member supported and which was passed by this Parliament provided for principles and a process of exemptions. It allowed those exemptions to be subject to parliamentary scrutiny. The decision to trial an opt-out model was endorsed by the peak New South Wales information management and technology body and the national Health Connect Board in 2004. A public consultation forum was held on 13 April 2005 with the Council of Social Service NSW [NCOSS] to provide information on the opt-out model to peak community bodies and to get feedback. Consumer consultation was held with 50 community organisations, two public forums were held in conjunction with NCOSS, and consumer survey research and focus groups were organised with members of the general population. All of these showed a very high level of support and a strong view that this type of initiative was overdue. The proposed model has been discussed with both New South Wales and Federal Privacy Commissioners. The pilot has the support of a range of clinicians, such as John Hunter Hospital's director of cardiology, Peter Fletcher, who told the Newcastle Herald:
You can't have too much information in a difficult clinical situation.
At the recent Council of Australian Governments meeting, the Prime Minister and State Premiers agreed to accelerate work on a national electronic health records system to enable health providers to communicate quickly and securely across the hospital, community and primary medical settings. These pilots will be fully evaluated and will make a valuable contribution to the progress on the national electronic health record. They are specifically time limited under the regulations to expire in 2009. Those who oppose this initiative are out of step with international experience and evidence, out of step with community opinions and expectations, out of step with clinicians, and out of step with the Federal Government.
Indeed, Healthelink will enhance patients' control over their own health record. People who are to access the record require specific identifying numbers. The patient whose record it relates to will be able to access his or her own record and determine from that access who has access to the record. There are very strong security provisions in place, and they are outlined in the pamphlet that is provided to patients so they can determine whether they want to opt out. I quote from the pamphlet:
Healthelink knows that protecting the privacy and security of health information is essential. There are several ways Healthelink looks after the security of the record. The computer your health information is stored on is kept in a secure room. All information sent to Healthelink computer is sent in a special way that meets with international clinical messaging standards. What this means is that information is scrambled into a special code that no-one can read while it is being sent, until it safely arrives at the Healthelink computer.
Healthelink is also protected by tools to keep it safe from viruses and from other people getting access if they are not authorised. Anyone who uses Healthelink will need their own personal username and password.
To make sure the Healthelink computer is secure, we run checks that can tell whether any authorised person is trying to access Healthelink. Our security systems are based on national and international standards and are similar to what banks use to keep online banking safe and secure.
Even personal log in details can be an important part of online security. That's why Healthelink makes it possible to see who has accessed your Healthelink electronic health record and what information they have looked at. This will help you to keep track of online access to your record.
I again emphasise that this is not a system that does not provide options. Patients who are given that information can make a decision that they do not want to participate. A comprehensive information campaign is already under way to ensure consumers in the pilot groups are aware of the Healthelink electronic health record. This information makes it clear that participation is voluntary, and provides information on how to opt out. There are four mechanisms by which patients can opt out. They can call the 1800 phone number that has been set up as part of the pilot, they can submit an opt-out form by mail, they can opt out over the Internet, or they can advise their general practitioner [GP] that they do not wish to participate.
Patients can opt out before they have any contact with the health system, or at their first visit to a participating GP surgery, and no clinical data will be collected. All patients who do not opt out at this point will be sent a comprehensive information pack about the pilot and will have a 30-day cooling-off period in which to opt out. During the cooling-off period no information will be accessible. Patients can also opt out at any time after this, and no clinical information will be stored after this date. Information collected before they opted out will be inaccessible.
Privacy and security will be paramount, in the way I have outlined. I am advised that the pilot has been enthusiastically embraced by older patients visiting the emergency department at Maitland hospital. Indeed, I am further advised that the help line established for the Hunter pilot has received a number of calls from people who are disappointed that they are not part of the target group for the pilot. If certain members of the Opposition and crossbenches who are over 65 years of age and who live in one of the pilot postcodes in the Hunter did not want to participate, they could opt out. It is that simple.
The Hon. Robyn Parker: Why don't you send them a letter?
The Hon. JOHN HATZISTERGOS: Obviously the Hon. Robyn Parker has not been listening, because I outlined the fact that there has been a letterbox drop. But the rest of the community's right to access better health care should not be allowed to be hijacked by a handful of privacy zealots in this place. If this motion succeeds, the pilot in the upper Hunter will have to be terminated and the children's hospital pilot in western Sydney will not commence. This will deprive older people, children and parents of the opportunity to access the very best health care that is currently available.
Of all the comments that have been made in this debate, a comment made by Ms Sylvia Hale, as usual, gets the prize for being the most offensive. Her characterisation of older people and those living in regional New South Wales and Western Sydney as being especially incapable of understanding and giving informed consent was most offensive. But then, what would one expect from someone who largely does not venture outside the inner city except to visit Byron Bay for holidays. It could be argued that regional New South Wales and Western Sydney are the most deserving of this investment, knowing, as we do, that socioeconomic disadvantage is a major predictor of poor health. This is not a theoretical argument. Older people have been selected because they are more likely to experience complex health problems requiring multiple interactions with the health system, and therefore they are one of the major beneficiaries.
An integrated, comprehensive health record for children lays the foundation for a lifetime of enhanced health care. Indeed, this system will enable important information such as the "blue book" to be incorporated in children's health records. Any parent who has forgotten to take his or her child's blue book along to a GP visit will understand how useful this feature can be. Do honourable members really want to deny those in the pilot studies the benefits that integrated health information can offer them, or to deny the rest of the community the benefits that electronic health records offer in the future? I urge all honourable members to oppose the disallowance of the regulation.
The Hon. PETER BREEN [4.55 p.m.]: The Health Records and Information Privacy Regulation establishes a pilot program conducted by the Department of Health to trial the electronic recording and exchange of health information of two groups of people: the first, people over the age of 65 who live in five identifiable postcode areas; the second, people aged 15 or under who reside in eight identifiable postcode areas. Importantly, the regulation permits any of the people so identified to opt out of the pilot program.
I was interested to hear the Minister say that all people in those postcode areas who fit into the two identifiable groups will be, or have been, notified of the trial and have 30 days in which to opt out. That information was not available to members on the crossbenches when they were briefed on this issue. In fact, I asked a question about it and was told that people would not have the opportunity to opt out. The regulation is made pursuant to the Health Records and Information Privacy Act, schedule 1, clause 15, which clearly provides that people who are the subject of any health records collecting are to give their express consent.
On the face of it, this aspect of the regulation is inconsistent with the legislation. However, clause 4 of schedule 1 provides that an organisation that collects health information is not required to comply with the provision if the organisation is lawfully authorised or required not to comply with it. It is what I call a two-bob-each-way provision. It allows the Government to publish a regulation that, on the face of it, does not appear to comply with the enabling legislation. However, on closer examination, the Health Records and Information Privacy Act does, in my opinion, allow for the regulation.
This is all a little legalistic. The important point is that the pilot program is already under way. It is a good program. I do not think there is any argument about the importance of there being a database for people's health records, particularly when they find themselves in an emergency situation. It is simply a question of whether this opting out and opting in is the appropriate way to allow people to be part of the pilot program. I believe that the regulation is a reasonable outcome. In the circumstances, I do not think it would be practical to ask people to opt in. People's apathy is such that in most cases they would simply ignore anything that arrived in their letterbox, particularly if they were healthy. Young people, for example, probably would not be too anxious to fill out a form and send it back. So it would be impractical, I believe, to have a pilot program asking people to opt in. On that basis I suggest to members that the regulation is appropriate in the circumstances and should not be disallowed.
The Hon. JENNIFER GARDINER [4.59 p.m.], in reply: Firstly I thank all members who contributed to the debate. If it is true, as the Minister said, that the practice that was the basis for the legislation under which this regulation was made is out of step with overseas practice, I believe that the Government should have introduced an amendment to the Act so the Parliament would have the opportunity to redebate the principles under which bipartisan support for the bill was given in 2002.
In 2002 the shadow Minister for Health at that time, Mrs Jillian Skinner, particularly referred to health privacy principle No. 15, which requires express consent—that is opting in—before a patient's record is placed on a shared electronic health records system. The Opposition gave its support to the legislation at that time on that basis. This regulation is a sleight-of-hand way of turning the impact of the legislation on its head. There are many instances of the Iemma Government trying to do this sort of thing—going behind people's backs, and in this case behind the back of the Parliament, to tie people down to regulations they were not consulted about and which they oppose.
A number of members who have spoken in this debate have acknowledged this turnabout. For example, the Hon. John Tingle acknowledged that what is in this regulation represents a change from the original bill. If honourable members read the contributions to the second reading debate on the original bill, including that of the Leader of the Government in this House at the time, the Hon. Michael Egan, they will see why so many people interested in privacy issues, professional organisations and representatives of professional practitioners, such as the Australian Medical Association, are opposed to this regulation. As the Hon. Dr Wong pointed out, it was the wish of the Parliament that patients opt in, and now with this trial it is the Government's wish that patients opt out. Ms Sylvia Hale asked: Why change the regulation around to conduct a trial? Surely a trial should replicate the system that it is intended to implement. That is a very good question.
Ms Lee Rhiannon made the point that the Government cannot be trusted on privacy matters, and she referred to debate in this place on the lack of a privacy commissioner and the like. I endorse those comments. A matter of concern with regard to privacy arose in this House just a couple of weeks ago when a Minister of the Crown—indeed, the Deputy Leader of the Government in this House—read out the contents of a personal note written by a member of the House, the Hon. Melinda Pavey. That is the culture of the Labor Government: it is undermining its own legislation with this regulation. The best possible safeguards have to be in place with such material. Yet in the case I have just referred to the Deputy Leader of the Government, Mr Costa, abused another member's privacy inside the Parliament. What hope have patients got outside the Parliament if health service workers are given access to electronic records and it is made possible for them to use them in an abusive way? The Government has certainly not consulted extensively on this regulation
The Hon. John Hatzistergos: Yes, we have.
The Hon. JENNIFER GARDINER: It is not what people are telling me.
The Hon. Don Harwin: The trouble is they don't listen to them.
The Hon. JENNIFER GARDINER: That is right, they were not listened to. There is a great deal of concern in the community about the ham-fisted way this electronics records system is being put in place and trialled. I urge the House to support the disallowance of this regulation.
Question—That the motion be agreed to—put.
The House divided.
Mr Della Bosca
Reverend Dr Moyes
Question resolved in the negative.