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- 4 September 2002
Health Records and Information Privacy Bill
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Page: 4534
Second Reading
Debate resumed from 11 June.
The Hon. Dr BRIAN PEZZUTTI [8.07 p.m.]: This important bill is part of a suite of legislation that is the result of the commitment of the Federal Government, in combination with a number of Ministers, to ensure appropriate privacy of health records and appropriate access by people to their records. The bill has two major functions. It protects the privacy of individuals and their health information, which is held both in the public and private sectors, and enables individuals to gain access to their health information. Further, it provides an accessible framework for the resolution of complaints about the handling of health information. That is a summary of the aims of the bill. The Minister's second reading speech was extraordinarily extensive. I was amused to hear the Leader of the Government read the entire second reading speech in this House. The usual practice is to incorporate second reading speeches. However, because the bill was introduced in this place, the Treasurer had to read the entire second reading speech.
The Hon. Richard Jones: It's not the first time it has happened.
The Hon. Dr BRIAN PEZZUTTI: It is the first time that it has happened to the Hon. Michael Egan. The bill contains a good definition of health information. The Treasurer listed the various privacy principles in their entirety, and I think even he was amazed at the nature of those principles. I believe this bill will go a long way towards achieving the aims that have been set. In drafting the legislation it was important to ensure that it established a process that protected people's privacy but did not get in the way of patient care. We could prevent all access to a patient's private health records but that could create dangerous problems if that person were hospitalised again in the future.
The best privacy principle for health records would be to burn them to prevent all access. However, that would not to be a very useful strategy if we needed to rely on those records some time in the future. For example, 20 years hence a health professional might need to know whether a patient was immunised at age four or at 20 or whether evidence of Crohn's disease was detected following an appendicitis operation. This is important information: A patient's medical history is useful if that patient gets sick again. This legislation addresses the need to keep health records private while allowing access to those records when necessary. This legislation ensures that patients can access their health records at any time. That was not necessarily the case in the past.
Patients will now be able to access information stored in medical records that was previously unavailable to them. Patients can now correct their records. For example, a patient can say, "No, they made a mistake: I'm not allergic to penicillin, I'm allergic to erythromycin." It is important that patients are able to check that information. It is also in patients' interests to ensure that their health records are retained for a certain period and to nominate how their records should be disposed of. In that regard the bill is very specific, well drafted and practical. Of course there are some costs involved. Electronic health records have been created in order to make records accessible within a reasonable period while maintaining barriers to public access.
People move around these days: They do not reside in the same place their whole lives or see the same doctor. The Commonwealth is fostering the creation of electronic health records in all Australian States. The major difficulty confronting the New South Wales Privacy Commissioner, the very learned Chris Puplick, was how to compile those records while retaining privacy. With the assistance of the Privacy Commissioner, the Ministerial Advisory Committee on Privacy and Health Information was established. The Privacy Commissioner and the committee have signed off on this legislation as being effective both in protecting privacy and in providing information. That is a very big ask. Of course the process will not be perfect, but this is about as good as man can do.
Electronic records are being created now. In public evidence to the Select Committee on Mental Health the Director of the New South Wales Centre for Mental Health, Professor Beverley Raphael, indicated that the Commonwealth Government has funded the compilation of electronic health records for people with mental health problems in this State in compliance with the provisions of this legislation. Commonwealth funding has been used to get that process started. Because Professor Raphael and her team were so advanced in their thinking and because this legislation had been drafted, they were able to tender for contracts to establish a process that complied with the bill. As a consequence, we are streets ahead of the other States because the Commonwealth is now able to fund Professor Raphael.
The other States have not introduced the relevant legislation and protections that allow medical information to be collected, collated and kept. It is also important to have a mechanism for checking who accesses health records. Professor Raphael is leading the Commonwealth in producing electronic health records for people with mental illness that comply completely with the 15 Federal privacy principles and with State legislation. I have no idea what this scheme will cost. The Department of Health has embarked upon a tender process for replacing handwritten health records with electronic records-at least in the public sector. I understand that that program will cost about $450 million over a number of years.
Huge savings will be achieved through this process and there will be huge advantages for patients, not just because health records will be available electronically and can be transmitted and accessed rapidly but because we will be able to track who accesses those records. We can then identify whether that person is allowed to do so. That is an important protection. The benefits of this scheme include rapid access to health records, the ability to make corrections to those records and, more importantly, the ability to identify who has accessed health records. I will not go through the principles of the bill as the Minister's second reading speech does not need repeating. However, I have several concerns about this legislation.
I am worried about limitations to access by relatives and friends. Those who would appear to have one's interest at heart will be prevented from accessing one's health records. A husband will not necessarily be able to access his wife's records without her explicit consent. Children aged 18 or even younger must consent to their parents accessing their records. The privacy principle does not allow others to access a patient's health records even if it is in that patient's best interests. Written consent must be obtained to enable access, which is a little clumsy. There will be difficulties when a person is not in a position to give written consent and a guardian's consent must be obtained. There are some access problems but this bill is about as good as it gets in striking a balance.
The other important point is that the Minister may by regulation introduce health privacy codes that may modify the application of the agreed privacy principles covering the collection, retention, disclosure, use or transfer of electronic or computer linkages and procedures to deal with information held by organisations. Changes may be made by way of regulation when this legislation is enacted. Honourable members in this place must watch carefully what the Minister does by way of regulation. He will not be able to do anything that is prohibited by the Act but via regulation he will be able to change the way in which we do things. It is imperative that the process be subjected to the same level of scrutiny as that applied to the introduction of the bill. The bill contains additional reasons for non-compliance relating to private sector providers where other Acts apply, such as regulations under the Medical Practice Act to deal with retention and disposal of records held by individual practitioners, and special provisions relating to the retention of and access to records and amendments to other health information. I believe these practical arrangements will be workable.
The provisions do not apply to small businesses that employ less than five people. Originally the Opposition foreshadowed moving amendments to exclude small businesses or agencies within the meaning of the Privacy Act. The Opposition was concerned with the operation of HealthQuest, a government agency that provides advice to the Government on government employees. However, the Opposition has been assured by the Minister and his advisers that HealthQuest is not an independent agency and that all agencies of the State are covered by the bill. More important, HealthQuest is an agency within the Central Sydney Area Health Service and those who are part of that area health service are covered by the bill.
The Opposition is of the view that the bill should not contain a definition of "compliance" that is different from the definition in Commonwealth legislation. It would be nonsense if people in New South Wales who run a practice with three or four employees with a turnover of less than $3 million were subjected to different rules and reporting mechanisms. In light of the Government's assurances, the Opposition will not move the foreshadowed amendments to clause 4 of the bill. My colleague in the other place the honourable member for North Shore has had wide consultation with the Privacy Commissioner, the Council of Social Service of New South Wales [NCOSS], the New South Wales branch of the Australian Medical Association [AMA], the Mental Health Association, the Mental Health Co-ordinating Council and the Private Hospitals Association.
The last three associations did not provide her with a response. NCOSS welcomes the bill but has concerns about unauthorised access and auditing compliance. The AMA is of the view that the intent of the bill, as disclosed by the second reading speech, appears reasonable, but expressed concern about the practical aspects and seeks early review of its ramifications on the health sector after six to 12 months. The regulations provide a practical way in which to implement the bill. They do not conflict with the bill but expand on it, dealing with the requisite forms, records and so on. This House will have the opportunity to amend the regulations if necessary. The AMA, NCOSS and the Privacy Commissioner can decide whether the regulations are fair and reasonable or otherwise.
I believe adequate protections are contained in the bill provided that this House keeps its mind on the job, because the other place is far too busy with other matters. The bill is binding on the Crown. This means that no-one in this State-no Minister of the Crown or government agency-is beyond prosecution or being held to account for privacy records. I note that the Anti-Discrimination Act does not include a definition of small business, but I understand that the definition contained in the Commonwealth legislation will apply. I understand also that the Government will move amendments to the bill with regard to the use of health records by the media. The Opposition will consider those amendments when they are moved, but from my briefing I believe they will be acceptable to the Opposition. I have not seen a copy, but I have been briefed on their intent. The shadow Minister and I are confident that the identified problem will be solved by the amendments.
The Minister gave his second reading speech on 11 June. The bill has been the subject of major consultation and forensic review by the Privacy Commissioner. It has been discussed widely with major organisations, and my colleague in the lower House and I have carefully read the bill. I believe that the bill deserves the support of the Opposition. However, the Opposition will not move the foreshadowed amendments because they are in conflict with Commonwealth legislation. I look forward to the Minister moving amendments in Committee. I have now received a copy of those amendments and indicate that the Opposition can see its way clear to support them. I wish the Government well in the implementation of the bill. We look forward to the regulations and the production of the electronic records, because the absence of e-records could put people's health at risk. The Opposition supports the bill.
Ms LEE RHIANNON [8.28 p.m.]: The Greens welcome the Health Records and Information Privacy Bill, which sets out a regime to protect the privacy of the people of New South Wales with respect to their health records. We recognise that it represents a genuine attempt to put in place an appropriate privacy regime, particularly for electronic records. However, we have significant concerns that the bill as it stands lacks important privacy safeguards. The issue of privacy is, of course, a matter of some importance for the Greens. All too often both government and the private sector act with reckless abandon with respect to the privacy of individuals. Personal information, financial data, consumer history and political opinions are all details that can be put to inappropriate and invasive ends.
Health records are particularly personal in nature, and their inappropriate release could result in considerable embarrassment and discomfort for individuals. In some cases it could have more serious consequences, such as the loss of employment, the suffering of discrimination or a strain on personal and family relationships. In this vein, we are concerned that the bill does not make it an offence to access health records without authorisation. An offence only arises if it can be proven that a health record was used inappropriately. This, we believe, does not offer sufficient protection to the public.
Similarly, we are concerned that the bill does not prevent health providers from forcing patients to allow their files to be placed on electronic files or used for research purposes. This is particularly an issue for people in isolated areas, who may not have the option of going to another doctor or hospital if their first choice will only accept them on the condition that they sign over their files. The Greens acknowledge that this bill is the result of recommendations from an independent committee chaired by the Privacy Commissioner, and that the process which produced it was thorough. The bill articulates 15 health privacy principles governing the management of health records and information, as well as procedures for the handling and management of complaints about breaches of those principles.
The Greens welcome the role in the bill for the New South Wales Privacy Commission as the complaints-handling body for the private sector, but we are concerned that the current budget of the commission is inadequate for its current functions, let alone this added responsibility. It is imperative that the Government provides the Privacy Commission with the added funding necessary to handle health-related complaints. It is easy for government to delegate responsibility, but apparently much harder for government to allocate the requisite funds, a phenomenon which we see frequently with respect to local government.
The Greens are also concerned that the bill does not include a scheme for compulsory compliance audits. It is clear that such audits are necessary to provide both cultural change and community confidence that the privacy of health records is secure. We are disappointed that the Government has taken this conservative path, citing the financial burden that compliance audits would place on both the public and private sectors. Clearly this situation may change in the future, and we certainly hope that down the track this Minister or a future one will utilise the regulation-making power in the bill to introduce compulsory compliance audits. We acknowledge, however, that on the whole the bill is a step forward for privacy in New South Wales, and we call on the Government to make this step only the first of many. We will be supporting the amendment that I understand the Democrats will move. I urge all honourable members to do so as that will indeed strengthen the bill.
The Hon. Dr ARTHUR CHESTERFIELD-EVANS [8.33 p.m.]: The Democrats support the Government's aim: of giving a framework to health records and information privacy in the bill. This is a very difficult endeavour, and we believe the Government has made a very sincere and genuine effort to address the difficult balancing act between the needs of privacy and the need for access to information. This bill will establish an Act that will regulate the use of, and access to, health records held by public and private sector organisations operating in New South Wales. It is intended to establish a regulatory framework for the management of electronic personal health information by public and private sector organisations.
Those who have not worked in the health sector may not realise the immense difficulties that lack of health information causes the doctor seeing a patient. The doctor basically starts from square one. To take a reasonable record of someone's health history requires at least half an hour, and that assumes that the patient is coherent and remembers everything. However, often patients do not remember the sequence or timing of occurrences in their health history, important aspects may be omitted, drug treatments and dosages may be unclear, and many other matters of interest may well require the new doctor to ask the pertinent questions again. That takes, and sometimes wastes, an immense amount of medical time. Make no mistake about that. It is worse in complex cases.
Of course, patients may not be able to communicate, in the simplest case because they cannot remember, do not understand, have language problems, or have had a stroke and have difficulties with speaking, or may be none too bright or unconscious. In each case, a great deal of information has been lost, or great difficulty is involved in obtaining that information. All too often patients suffer because the medical practitioner does not have that information. The fact that a patient is diabetic and in a coma is highly significant on occasions. If the doctor does not know that a patient is a diabetic, by the time the practitioner establishes that fact the patient could have suffered irreversible brain damage. This is extremely important information.
So, although we are very conscious of privacy, we must also be conscious of the fact that ignorance is not an absolute safety factor and something to be protected at all costs. There is a considerable advantage in having information. Of course, there are some disadvantages, such as inability to obtain insurance, or incidents of discrimination occurring where the wrong people get hold of health information. Indeed, such information may cause severe embarrassment in family relationships. This is a matter that was referred to by my colleague the Hon. Dr Brian Pezzutti. So information about individuals must be handled delicately in an effort to manage their health and interpersonal relations.
At another level, I was one of the highly unusual Democrats who supported the Australia Card. Not many people supported the Australia Card. I was a supporter of it because questions of whether pesticides increase the incidence of lymphoma, or whether electric fields cause leukaemia among electricians, are difficult to research and require studying a large number of people for a long time. The cost of building and maintaining those databases is horrendous. Much of that type of research simply is not done because of the difficulties in collecting data. The good research comes out of Scandinavia, where cards enable the tracing of individuals, and the cross-referencing of their health and mortality to their occupations.
While it may be threatening to know that this sort of information is in the hands of the State, access to such information has its advantages in the maintenance of public health, the identification of public risks and the formulation of preventive health policies, which are dear to my heart. So it is a question of ensuring that the use to which information is put is in the interests of the individual and hopefully of the population, and not to their detriment. It is not the information that is harmful; it is how it is used. The bill establishes codes of practice, mechanisms for complaints and dispute resolutions, and criminal penalties for offences committed against the Act. The Act will implement the recommendations of the Ministerial Advisory Committee on Privacy and Health Information. The proposed Act establishes 15 health privacy principles regarding the use of health records. Those are defined in schedule 1 to the bill. I will not go through all the other provisions of the bill one by one as they are available for people to read. Under part 5 of the bill the application of information technology to the management of health and the transfer of data from New South Wales to other States or Commonwealth agencies may be subject to a code of practice.
People rejected the Australia Card but we all got a tax file number, which was a unique identifier. Under this system we will have a unique health record. And we are all identified by the Credit Reference Association. So databases have been built up about us that are under less scrutiny than the Australia Card records would have been. Indeed, the worry is that we will have all the disadvantages of not having a universal scheme together with all the disadvantages of having people build databases that are less supervised than a universal scheme would have been-in other words, the worst of both worlds.
In the early 1980s, I think-it was certainly quite some years ago-I spoke to a committee chaired by Barry Jones about the management of information. I talked about the use of pooled information for the public good, particularly with relation to health research but also so that bills could be staggered and would not arrive all at once. I also spoke about the cost of many different organisations having to maintain separate databases. Costs could be cut if they could all plug into a common database. That has not yet been agreed to but perhaps if the licensing agencies, the electricity agencies, councils and all the other groups that have records plugged into an agreed system it would be far more convenient for people moving house, paying their bills and so on. Fear of the misuse of information has caused the loss of available benefits yet information on the database is still quite vulnerable to misuse. That is the case with this proposal.
My philosophy that it is not the information that is the problem but the way in which it is used has led me to look at situations in which the information is misused. Some private hospitals require a patient entering the hospital to sign an agreement that any information about the patient's health may be used by the hospital in assessing the treatment required. So a large private hospital chain could gather magnificent comparative data on the performance of surgeons, the success of one operation against another, or the efficacy of one drug against another. That may then have an economic value. Indeed, research may even be privatised as part of the process in that the only people able to do this type of research would be private sector organisations with the data management setup and the permission in place to gather the data.
The implications of that are significant. The technology for gathering this type of information already exists in computerised private hospital chains and indeed in public hospitals. It could be done relatively easily. So we should look at what is done with the information. For example, if an insurance company had information on a father with a hereditary problem and his son applied for insurance the son could be discriminated against on the basis of the father's record. If the son had not revealed the information and was knocked back for insurance should the insurance company be forced to offer the same sort of deal as it would to someone it had no information about? If information about health leaks is traded illegally, which is clearly a possibility given the huge financial incentive to find out whether patients are high risk, should the onus of proof be on people to prove that the insurance company that is not offering them the normal deal on insurance has information and has achieved access to their health records, or should the onus of proof be on the insurance company to prove that it had a valid reason for not offering the same deal as everybody else and did not have access to the information?
The Government has indicated that it is not willing to support the amendments I prepared to reverse the onus of proof, on the grounds that it is difficult for insurance companies to prove a negative. Given that information can be traded quite untraceably in many cases, which approach is better? The information is neutral; it is how it is used that is the problem. That is the same point I make when we talk about drug policy: it is not the drug; it is how is used. The Government has made a good step in trying to protect privacy while making records more available. It has supported the Privacy Commissioner's powers under the Act. I fear that the Government has been slightly unrealistic in the sense that people complaining about the misuse of their health information breaching their privacy have a difficult task in proving it. People whose information has been illegally obtained and misused often will not be able to prove that, and thus the bill will not protect their privacy. At least the Government has addressed this area.
The Council of Social Service of New South Wales [NCOSS] had concerns in relation to unauthorised access to health information. Sanctions are provided against corrupt disclosure, use or supply of health information, but there are no sanctions against unauthorised access to information. NCOSS asked that that be prohibited. It also said that consent to link health records must not be a condition of treatment and asked that the legislation make it unlawful to refuse to provide health care on the grounds that a person had not consented to participate with electronic health records. Unfortunately, the Government would not support either concept. It will be difficult to predict how it will work in practice. It worries me that there may have to be a tightening up, because there will be a period in which information has been accessed in a certain way. Information about a number of individuals may have been transferred. This is a genuine and reasonable attempt to address this difficult issue. The Australian Democrats support the bill.
The Hon. RICHARD JONES [8.50 p.m.]: The Council of Social Service of New South Wales [NCOSS] released a report in May that offered support for the bill. However, it outlined some concerns that organisations and individuals had and it proposed amendments to rectify them. First, it proposed that the legislation be amended to prohibit unauthorised access to health information and include penalties for obtaining such access. Currently the bill contains sanctions for corrupt disclosure, use or supply of health information, but there are no sanctions for unauthorised access. Several New South Wales Acts already prohibit access without lawful authority, including the Crimes Act 1900 and the Births, Deaths and Marriages Registrations Act 1995. The Minister's office has advised me that amendments to the Crimes Act in June 2001 created a range of offences relating to unlawful access, modification and impairment of data. It included penalties involving between two and 10 years imprisonment. It was developed in conjunction with other States and Territories to ensure a nationally uniform approach to such offences.
Second, NCOSS argued that the legislation should provide that it is unlawful for a health facility to refuse treatment on the grounds that a person has not consented to participate in electronic health records [EHR]. The bill currently does not forbid discrimination on the basis of whether a person has consented to have his or her health information linked in EHR. Clause 70 (2) of the bill addresses this issue by making it an offence to obtain any consent required under the Act including, but not limited to, consents required under Health Privacy Principle [HPP] 15 by use of threat, intimidation or false representation. While EHR will encourage consistency of practice throughout the health system, there is certainly concern in the community that information recorded by prior practitioners could prejudice or unduly influence the opinions and diagnosis of future practitioners. The security of EHR is also of concern. The workshops run by NCOSS revealed that consumers feared that hackers could obtain sensitive information and they wanted a high level of control over who could access their records. Fear was also expressed that in years to come the integrity of the information could be compromised should a future government outsource the administration of EHR.
The AIDS Council of New South Wales notes that EHR raise particular concerns for people with a chronic illness. This issue needs to be addressed in the implementation process. Generally the concerns relate to the potential for prejudicial treatment by private health organisations and insurance companies if an individual's health information were to be disclosed. This highlights the need for the implementation process to include training across all disciplines to ensure that all health service providers have an equal capacity to competently participate in the system. The Privacy Commissioner released a statement in relation to the bill on 14 June. He said:
The Bill has arisen from the Recommendations contained in the December 2000 report of the Ministerial Advisory Committee on Privacy and Health Information, titled 'Panacea or Placebo' (the MAC Report).
The Ministerial Advisory Committee had as its Terms of Reference the need to provide:
'effective strategies to ensure NSW Health and its partners in health services delivery ensure personal health information is collected, stored and used in accordance with NSW and Commonwealth privacy principles'.
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 commissioner noted that his office has been extensively consulted with respect to the development of this bill. However, he outlined a number of concerns about the legislation, in particular the lack of adequate protection afforded employees in both the public and private sectors; the lack of adequate protection afforded employees and customers of businesses with less than a $3 million turnover; the adequacy of HPP 10 and HPP 11 with respect to the direct relationship test; the need for some retrospective application of HPP 15 to bring existing systems into compliance with the requirement for express consent; and the need to include DNA data used for identification purposes within the provisions of the legislation. I have been advised that amendments pursuant to the commissioner's request were not actioned due to constitutional consistency with the Commonwealth legislation or because of a need to minimise compliance costs. While I can appreciate both reasons I argue that, first, sometimes New South Wales should take and implement improved legislation even if it is not 100 per cent compliant and perhaps the Commonwealth would see fit to follow. Second, whilst compliance is necessary, we should ensure that what people are complying with is as proficient as possible.
The Hon. CARMEL TEBBUTT (Minister for Community Services, Minister for Ageing, Minister for Disability Services, Minister for Juvenile Justice, and Minister Assisting the Premier on Youth) [8.55 p.m.], in reply: I thank honourable members for their contributions to the debate. When amendments are moved during the Committee stage further issues will be canvassed. In response to comments made by the Hon. Dr Brian Pezzutti in relation to HealthQuest, I assure him that it will be required to comply with the terms of the Health Records and Information Privacy Bill, which specifically covers public sector agencies. Clause 4 contains an extensive definition of the term which was designed to ensure coverage of area health services established under the Health Services Act. I am advised that HealthQuest forms part of the Central Sydney Area Health Service, which is serviced and administered under that Act. As such, HealthQuest is already covered by the Privacy and Personal Information Protection Act and will also be covered by the provisions of the Health Records and Information Privacy Bill. I commend the bill to the House.
Motion agreed to.
Bill read a second time.
In Committee
Part 1
The Hon. Dr ARTHUR CHESTERFIELD-EVANS [8.57 p.m.]: I move Australian Democrats amendment No. 1:
No. 1 Page 2, clause 3, line 16. Omit "information." Insert instead:
information, and
(d) providing a framework for population research in the public interest using pooled, and anonymous, data.
As I said in my contribution to the second reading debate, health information relates to individuals but it needs to be used in a collective manner to discover public health trends. In the public interest, pooled data can help one to come to conclusions. I referred to the linkage in Sweden of data about one's occupation with one's life expectancy. For example, data is available that compares the amount of fish in the diet of Swedish fishermen to their blood pressure. Data is available on railwaymen who use a lot of pesticides while keeping weeds off the tracks and their incidence of lymphoma compared to that of the general population. Generally it is important to use data from large populations when comparing public health trends. This amendment states that an objective of the bill is to provide a framework for population research in the public interest, using pooled and anonymous data. In other words, you take the names off it but you keep the other data about their demographics and their health. You compare the demographics with their health, then you can formulate public policy. This is an important objective of the bill, and it should be included.
The Hon. CARMEL TEBBUTT (Minister for Community Services, Minister for Ageing, Minister for Disability Services, Minister for Juvenile Justice, and Minister Assisting the Premier on Youth) [9.00 p.m.]: The Government does not support the amendment moved by the Hon. Dr Arthur Chesterfield-Evans. As honourable members would be aware from the second reading speech, the Health Records and Information Privacy Bill deals exclusively with the collection, use and management of information that either identifies or can identify an individual person. It does not deal with the de-identified-that is, anonymous-information. The amendment, which is intended to be included in the purpose and objects clause of the bill, in reality runs counter to the purpose of the bill. In addition, it refers to population research using anonymous data. However, no provisions in the bill deal with population research. The only research provisions relating to the use of health information is de-identifying. The amendment also fails to reflect the content of the bill. The Government is also concerned that important public health projects rely on the use of anonymous data. Any suggestion, however misleading, that this type of research must seek to comply with the requirements of privacy legislation could undermine the research. For these reasons the Government does not support the amendment.
The Hon. Dr BRIAN PEZZUTTI [9.01 p.m.]: The Opposition does not support the amendment. Clause 3 (2) states:
The objects of this Act are:
(a) to balance the public interest in protecting the privacy of health information with the public interest in the legitimate use of that information, and
(b) to enhance the ability of individuals to be informed about their health care, and
(c) to promote the provision of quality health services.
The concerns of the Hon. Dr Arthur Chesterfield-Evans are included in the purpose and objects of the bill, despite what the Minister may have said. My only concern about using de-identified information is the way in which the health information exchange process within the computerised system within NSW Health deals with de-identified information. I do not support the amendment of the Hon. Dr Arthur Chesterfield-Evans. It does not add to the bill.
The Hon. Dr ARTHUR CHESTERFIELD-EVANS [9.02 p.m.]: I am disappointed with the Government's answer.
The Hon. Dr Brian Pezzutti: My answer was better.
The Hon. Dr ARTHUR CHESTERFIELD-EVANS: Yes, the Opposition's answer was far better. The Hon. Dr Brian Pezzutti said that it was in the bill. I do not dispute that in a sense, but it should be stated up front. The idea that the bill is not about population research is silly because it should be about population research. If we are trying to govern for the best of the people of New South Wales, population research is quite desirable. The idea that collecting this much information will have no impact on population research is an almost absurd proposition. The fact that the bill does not refer to anonymous data is also irrelevant in the sense that the data exists. Nearly all the research, certainly population research, will render it anonymous. It is a simple matter of deleting the field that contains the name, or using an identifier that has a unique de-identified identifier that takes out the person's name. Without doubt this will be involved in population research. The Government's idea that it does not relate to population research is a poor answer. It worries me quite a lot that the Government has that poor conception and understanding. Although I thank the Hon. Dr Brian Pezzutti for saying that it may have been covered elsewhere, it does not hurt to put in the objectives. I am disappointed that the Government and the Opposition do not support the amendment.
Amendment negatived.
The Hon. Dr BRIAN PEZZUTTI [9.04 p.m.]: As I indicated in my contribution to the second reading debate, the Opposition does not propose to move its circulated amendments Nos 1 and 2, which were drafted by Parliamentary Counsel.
Part 1 agreed to.
Part 2
The Hon. CARMEL TEBBUTT (Minister for Community Services, Minister for Ageing, Minister for Disability Services, Minister for Juvenile Justice, and Minister Assisting the Premier on Youth) [9.04 p.m.]: I move the following Government amendment:
Page 14, clause 15, lines 15-17. Omit "unless and until the information is actually disseminated to the public or any section of the public".
During the consultation undertaken on the bill an anomaly was identified in the manner in which the bill applies to information that is in a generally available publication. Clause 5 (3) (b) excludes coverage of material that is contained in a generally available publication. Clause 4 (1) defines a generally available publication as a publication that is generally available to members of the public. The provision recognises the difficulty in imposing the requirements and obligations of the bill to material that is broadly in the public domain. Clause 15 (2) creates a discrepancy. It deals with the application of health privacy principles allowing access to information and a right to correct information to the news media. The provision states that these principles will not apply to news activities until information is disseminated to the public or any section of the public. This contradicts the broader intention of the bill, which is that where information has been disseminated publicly it will fall outside the ambit of the bill. The amendment will correct this anomaly.
In proposing this change the Government is also mindful of the fact that there are alternative means of pursuing a correction in a newspaper or other media report. The Australian Press Council Privacy Standards specifically deal with this issue and provide for media organisations to correct their information. I also emphasise that the amendment will not in any way alter the way that other health privacy principles apply to the news media. The bill will require the media to comply with health privacy principle 5, which obliges them to take reasonable steps to ensure the information is held securely. I also draw attention to principle 9, which will oblige news media to take reasonable steps to ensure that the information they use is accurate, relevant, up to date and not misleading.
The Hon. Dr BRIAN PEZZUTTI [9.06 p.m.]: The Opposition very much welcomes this amendment. I admit that we did not notice it. Any news medium will have to keep privacy watch on what it owns. It is not a matter of complying only when they publish. I am very pleased the Government has noticed that and corrected it.
Amendment agreed to.
Part 2 as amended agreed to.
Parts 3 to 5 agreed to.
Part 6
The Hon. Dr ARTHUR CHESTERFIELD-EVANS [9.08 p.m.], by leave: I move Australian Democrats amendments Nos 2, 3, 4 and 5 in globo:
No. 2 Page 36. Insert after line 11:
52 Proof of discriminatory behaviour
If in proceedings in relation to an inquiry into a complaint the complainant:
(a) establishes that the respondent has refused to deal with the complainant or has dealt with the complainant in a discriminatory manner, as referred to in HPP 16, and
(b) alleges that the respondent has done so on the basis of health information relating specifically to that person, or to any close relative of that person, that has not been provided by the complainant or with the complainant's written consent,
the onus of proving that the allegation is false lies on the respondent.
No. 3 Page 37, clause 54. Insert after line 8:
(e) in the case of a complaint that establishes that the terms of an insurance policy have been varied in contravention of HPP 16, an order restoring the terms of the insurance policy to what, in the opinion of the Tribunal, they would have been had they not been varied,
(f) in the case of a complaint that establishes that the benefits payable to a person, or the contributions payable by a person, under a superannuation scheme have been varied in contravention of HPP 16, an order restoring the benefits or contributions to what, in the opinion of the Tribunal, they would have been had they not been varied,
No. 4 Page 37, clause 54. Insert after line 22:
(4) An order referred to in subsection (1) (e) or (f) has effect according to its terms.
No. 5 Page 68, schedule 1. Insert after line 10:
16 Discriminatory behaviour
(1) An organisation that provides insurance cover must not:
(a) refuse to enter into an insurance policy with respect to a person's life or health, or
(b) vary the terms on which it is willing to enter into an insurance policy with respect to a person's life or health,
on the basis of health information relating specifically to that person, or to any close relative of that person, unless that information was provided by that person or with that person's written consent.
(2) An organisation that administers a superannuation scheme must not:
(a) refuse to allow a person to participate in the scheme, or
(b) vary the benefits payable to a person under the scheme, or the contributions payable by a person under the scheme,
on the basis of health information relating specifically to that person, or to any close relative of that person, unless that information was provided by that person or with that person's written consent.
(3) A person or organisation must not:
(a) refuse to deal with a person, or
(b) deal with a person in a discriminatory manner,
on the basis of health information relating specifically to that person, or to any close relative of that person, unless that information was provided by that person or with that person's written consent.
(4) In subclause (3), a reference to dealing with a person includes:
(a) a reference to entering into an insurance policy with respect to a person (as referred to in subclause (1) (b)) or allowing a person to participate in a superannuation scheme (as referred to in subclause (2) (b)), and
(b) a reference to providing goods or services to the person, extending benefits to the person, accepting the person as a member of a club or association and
allowing the person to participate in any activity.
The reality is that it will be much easier to buy health information from corrupt officials than to prove that such information has been bought. This information can be used to track genetic diseases. The presence of a disease in a relative means that it is likely to be found in other relatives. Armed with this information, insurance companies, health funds and superannuation funds can exclude a person from the benefit he or she would otherwise have enjoyed. The financial consequences of certain diseases and genetic information are likely to be known to these agencies before they are recognised by the community. I would like to add a clause to the bill to force insurance companies that deny a benefit-for example, standard rate-to show the basis on which such benefit is denied and where they got the information that resulted in the denial.
If they are not able to show that the information was legitimately obtained, they must offer the benefit as if the information was not held by them or did not exist. The onus of proof that the information was legitimately obtained should lie with the respondent, not with the complainant. In practice, this would be achieved by a person appealing to the Privacy Commission to establish a prima facie case and then asking the Administrative Decisions Tribunal to rule that the insurance company cease using the information and provide the benefit or product that would have been offered in the absence of such information. This amendment would reverse the onus of proof, but I believe that complainants would not be able to prove that the information was illegitimately obtained and used to discriminate against them.
The reversal of onus of proof does not put too great a burden on the companies. Theoretically, if they collect the information from a person or from the a doctor, having obtained a signed release, they would be able to prove they had done the right thing. They could say, "This is the information that was obtained. This is the way it was obtained. This is why the benefit is not being offered." If they could not prove legitimacy, the question to be asked is why could they not prove such a straightforward process? The amendments introduce a reversal of onus of proof, but I believe it is the only practical way for the Act to be workable in a privacy sense. I commend the amendments.
The Hon. CARMEL TEBBUTT (Minister for Community Services, Minister for Ageing, Minister for Disability Services, Minister for Juvenile Justice, and Minister Assisting the Premier on Youth) [9.11 p.m.]: The Government does not support the proposed amendments moved by the Hon. Dr Arthur Chesterfield-Evans. As honourable members are aware, the Health Records and Information Privacy Bill is designed to deal with the collection, use and management of health information. The amendments moved by the Hon. Dr Arthur Chesterfield-Evans deal with discriminatory behaviour, which is a completely different issue. The question of when it is unlawful to discriminate against a person in relation to insurance superannuation or the provision of goods and services is already comprehensively dealt with by the Anti-Discrimination Act.
Under that Act it is already unlawful to discriminate on the basis of a disability, with "disability" defined broadly to include illness or disease. The Anti-Discrimination Act already deals with the issue of discriminatory conduct by insurers and superannuation schemes where a person has a disability. Under the Act, discriminatory conduct can be lawful if the different terms or conditions of a policy are based on actuarial or statistical data on which it is reasonable to rely. The proposed amendment, therefore, cuts directly across the existing scheme under the Anti-Discrimination Act. I would suggest that if the honourable member has concerns with the provisions of the Anti-Discrimination Act, those concerns would be best addressed in the context of that Act. For these reasons, the Government does not support these amendments.
The Hon. Dr ARTHUR CHESTERFIELD-EVANS [9.12 p.m.]: The existing Anti-Discrimination Act is sufficient, provided one can prove that discrimination occurred. These amendments relate to the essence of proof. I have moved these amendments because I do not believe that people would be able to prove that they were discriminated against. It may be shown actuarially that a certain gene or medical condition worsened a prognosis, thus giving an insurance company a basis for discrimination. If privacy were maintained and the company did not have that information, it would not have an actuarial basis to discriminate. If a person cannot prove discrimination or, in the case of my amendments, the company is not able to prove that it obtained the information by lawful means, then this is a necessary and practical augmentation to the existing Anti-Discrimination Act. It does not in any way contradict or conflict with it.
Amendments negatived.
Part 6 agreed to.
Part 7 agreed to.
Part 8
The Hon. Dr BRIAN PEZZUTTI [9.14 p.m.]: I draw the Minister's attention to clause 78 (1) of the bill, which states:
(1) The Minister is to review this Act to determine whether the policy objectives of the Act remain valid and whether the terms of the Act remain appropriate for securing those objectives.
That is a limited review that is proposed rather than included as an actual practice of the Act. Subclause (2) states:
The review is to be undertaken as soon as possible after the period of 5 years from the date of assent to this Act.
This bill will be assented to and various parts will be promulgated. Some parts of the bill will not be promulgated because the Minister will delay the impact of the Act on some private institutions, as is stated in the Act, by allowing a phasing-in period. Therefore, the Act and regulations may not be fully in place in five years. I am concerned that we may have to wait five years for the full impact to be felt before the bill can be reviewed. I seek advice from the Minister about this matter. I am concerned whether the review will be undertaken five years after the entire bill is in place or simply from the date of assent. If things are not going well, it is not acceptable that we have to wait five years before the Minister's review.
The Hon. CARMEL TEBBUTT (Minister for Community Services, Minister for Ageing, Minister for Disability Services, Minister for Juvenile Justice, and Minister Assisting the Premier on Youth) [9.17 p.m.]: As a matter of clarification, does the Hon. Dr Brian Pezzutti want to know whether the review will be five years after the date of assent to the Act or five years after all aspects of the Act are proclaimed?
The Hon. Dr Brian Pezzutti: Five years after all aspects of the Act are proclaimed.
The Hon. CARMEL TEBBUTT: Which would obviously be longer than five years.
The Hon. Dr Brian Pezzutti: That is right.
The Hon. CARMEL TEBBUTT: I do not have specific advice, but I undertake to take up the honourable member's concerns with the Minister and obtain a response. I am advised, however, that the "review of the Act" clause is a standard clause. It says "5 years from the date of assent to this Act" rather than five years from the date of proclamation of all aspects of the Act. I believe that would give some indication that it would be five years after the actual assent of the Act, which will occur in the near future. I will clarify the matter and obtain advice from the Minister and provide it to the honourable member.
The Hon. Dr BRIAN PEZZUTTI [9.18 p.m.]: I am satisfied with that answer. If at any stage we discover that is not acceptable, we can always come back and amend the Act.
Part 8 agreed to.
Schedules 1 to 3 agreed to.
Title agreed to.
Bill reported from Committee with an amendment and passed through remaining stages.
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