REPORT ON ACCESS TO MEDICAL RECORDS
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CHAPTER 4 - PRIVACY ISSUES
Privacy and the private sector
4.1 The Privacy Act 1988 (the Privacy Act) has been in operation for
almost a decade in Australia. The scope of the current Act covers data
protection standards for personal information for the federal Government,
and the Act's Information Privacy Principles (IPP's), cover collection,
storage and security, individual access and correcting, use and disclosure.
With some limited exceptions such as credit reporting (which is also covered
by the Privacy Act), and telecommunications carriers and suppliers (covered
in part by the Telecommunications Act), [1]
there are no legislative standards applying to the private sector. [2]
4.2 As noted, it has been announced that the Commonwealth will not be
implementing a privacy regime in the private sector. The argument advanced
is that, `[a]t a time when all heads of government acknowledge the need
to reduce the regulatory burden, proposals for new compulsory regimes
would be counter productive. On those grounds, the Commonwealth will not
be implementing privacy legislation for the private sector'. [3]
In reality, the application of privacy legislation already extends into
specific areas of the private sector.
4.3 In the area of credit reporting, the Federal Privacy Commissioner
plays a monitoring role in the private finance and banking sector and,
more recently, the Federal Privacy Commissioner's monitoring role has
extended into the arena of public and private telecommunications. The
recently enacted Telecommunications Act incorporates the Federal Privacy
Commissioner's function of monitoring compliance with record-keeping requirements.
The Federal Privacy Commission will have access to the records of `the
carrier, provider or operator as the Federal Privacy Commissioner requires
for the performance of the function conferred by subsection (1)',
that is, the functions conferred on the Federal Privacy Commissioner by
the Privacy Act 1988. [4]
4.4 In light of the Federal Privacy Commissioner's monitoring role which
currently extends into credit reporting and telecommunications, the Commonwealth
is now de jure extending important elements of privacy legislation
directly into key areas of the private sector.
4.5 The necessity to extend privacy legislation into the private sector
has been widely acknowledged. The former Federal Privacy Commissioner
(Mr Kevin O'Connor) advocated over a number of years extending privacy
rules into the private sector. The Federal Privacy Commissioner commissioned
four surveys from 1990 to 1995 to explore public opinion on privacy issues.
In August 1995, an information paper on privacy issues was published.
The major findings, presented in Community Attitudes to Privacy, [5]
left no doubt that privacy is an issue of considerable concern to most
Australians. The Federal Privacy Commissioner reported that:
Nine in ten people think that when personal information is collected
they should be told exactly what it is used for.
A similar proportion believe they should be asked permission
before their personal information can be passed from one organisation
to another.
Only one in ten people thinks information kept on computer is
adequately safeguarded.
More than eight in ten Australians believe that governments should
pass legislation to protect privacy and that privacy laws should apply
to both government and business. [6]
4.6 In 1996 the Federal Privacy Commissioner received positive support
from some of Australia's largest companies in favour of the introduction
of a national Privacy Act to regulate the private sector and/or oversee
specific industry privacy codes. The results of a survey commissioned
by the Federal Privacy Commissioner conducted by Price Waterhouse among
120 of Australia's biggest companies indicated that two thirds favoured
the introduction of privacy legislation in the private sector. [7]
Pro-privacy groups, [8] Federal Privacy
Commissioners and State Privacy Committees, [9]
and members of the legal profession [10]
have all urged the introduction of a privacy regime into the private sector.
4.7 Ms Moira Scollay, recently appointed as Federal Privacy Commissioner,
confirmed that the Privacy Commissioner's office has, for some years,
`argued that uniform privacy legislation is the best way to implement
a scheme of privacy protection which will meet the needs of both business
and consumers'. In a background paper on privacy protection in Australia,
the Federal Privacy Commissioner contended:
Protecting privacy is more than guaranteeing confidentiality.
The aim of privacy protection in Australia should be to ensure that
individuals are informed about what is happening to their information,
and are able to participate in decisions about what is being collected,
who collects it, and why. [11]
4.8 Among the issues raised, three key points were identified which can
be directly related to access to medical records and the fair and responsible
handling of personal information.
Allowing people to access information about them which has been
collected, and to correct it if it is inaccurate or out-of-date;
Making sure that the information is securely held and cannot
be tampered with, stolen or improperly used; and
Limiting the use and disclosure of personal information for other
purposes without the consent of the person affected. [12]
4.9 In relation to the Committee's inquiry into access to medical records,
the Federal Privacy Commissioner presented compelling arguments in favour
of extending privacy legislation into the private health sector:
I come from the view that patients' access to their own health
records is a very strong and significant matter of principle. However,
I do not argue just for access and correction rights. These are a necessary
part of a wider privacy regime but they are not sufficient on their
own.
I also believe that without access and correction rights we cannot
properly address any other privacy issues. To imagine that people can
be asked who should have access to their records, and who can be allowed
to have secondary disclosures, without they themselves knowing what
is in those records, is extremely problematic.
As we approach the twenty-first century, the handling of health
information cannot any longer be seen simply as a doctor's handwritten
card with patient information on it. This committee has already had
evidence of the rapidly expanding technologies and the different approaches
to health care which require many more people to be accessing health
data, most of it in identified form. As technology and new approaches
sweep over the health sector, consumers are becoming legitimately concerned
about what happens to their information. [13]
4.10 The Federal Privacy Commissioner recently announced an initiative
which, in its intent, aims at eliminating the risk of a network of inconsistent
State-based privacy laws. In a background paper released in April 1997,
Privacy Protection in Australia, the new Commissioner outlined her view
on uniform national legislation:
My office has, for some years, argued that the uniform national
privacy legislation is the best way to implement a scheme of privacy
protection which will meet the needs of both business and consumers,
and it remains my view that a legislatively-based “co-regulatory”
approach would best achieve this result. I believe it should be possible
to devise a statutory regime which is neither onerous nor costly for
business. [14]
4.11 Only the Northern Territory and Queensland have agreed with a recent
Government request not to proceed with extending privacy legislation within
their own jurisdictions. The main pro-privacy States, NSW and Victoria,
have only agreed to review their position in relation to privacy legislation
for the private sector. [15]
4.12 The Australian Law Reform Commission (ALRC) supports the extension
of privacy legislation into the private sector. The ALRC confirmed that:
[t]he commission's view would be that the best way to approach privacy
protection in the private sector, including access to health and medical
records, would be to institute an extension of the Privacy Act into the
private sector.
Other countries have already extended privacy into the health
care area. On an international level, I think we will find greater and
greater pressure for this, not only through the commitment that we have
to privacy rights under the International Covenant on Civil and Political
Rights but also through the OECD's guidelines in 1980 on not only public
but also private sector records and access, use and storage of those
records. [16]
Retention and storage of records
4.17 At present, there are limited legal requirements for private medical
practitioners to store medical records. Doctors are required to retain
records relating to the prescription of certain drugs and relating to
public health notifiable diseases. Evidence emerging from the Committee's
inquiry revealed that there are significant variations in the way medical
records held in private general practice are handled in the States and
Territories. The Committee was concerned to learn that there is no statutory
national legislation which prescribes the way records should be retained,
transferred or destroyed.
4.18 Medical practitioners are advised by professional bodies on methods
of record keeping. The AMA and the Medical Defence Union (MDU), for example,
provide regular advice to members, and there are legal and ethical considerations
which guide practitioners. [23]
4.19 Queensland is the only Australian state which has legislated, by
Part 9B of the Medical Act of 1939, to grant to the Queensland Medical
Board extensive powers in relation to clinical records:
Such records and those of retired practitioners or records that
are abandoned, may be taken into the safekeeping of the Board or it
may order they be held on the Board's behalf or transferred to another
person. The Queensland Medical Board also has the power to destroy records
in its possession when it is satisfied that their retention is no longer
necessary. [24]
4.20 The ACT Commissioner for Health Complaints (ACTCHC), advised the
Committee that in the ACT there is no legislation providing guidance about
the period of retention of health records or statutory archiving procedures.
Institutions such as Canberra Hospital have their own procedures. The
Commissioner advised the Committee that the proposed ACT legislation relating
to access to medical records will not incorporate specific standards or
procedures:
The complex questions in the area require separate policy development
... However, a regulation-making power will be included in the legislation
to allow development by the [ACT] Government of a schedule for periods
of retention of health records, in cooperation with health service providers,
medical defence organisation and other insurers involved in professional
indemnity matters, and health service consumers. [25]
4.21 The ALRC advised the Committee that ethical principles require that
a doctor `should retain medical information about a patient which allows
them to adequately treat that patient for as long as is necessary'. Furthermore,
the `legal consequences of not keeping medical records offer an even more
compelling reason why doctors are advised to retain records'. The ALRC
noted that:
Doctors are ... advised to retain medical records for as long
as it is possible for a patient to bring an action against them. In
negligence actions the limitation period is generally three to six years,
which begins from the time a minor reaches the age of eighteen. [26]
4.22 The Health Information Management Association of Australia (HIMAA)
advised the Committee that currently there is little overall direction
to health professionals regarding the retention of records. HIMAA indicated
that any patient access to records scheme should consider carefully any
provisions regarding the retention and destruction of records to avoid
records `being pre-emptively destroyed so that access cannot be granted'.
[27]
4.23 Australian Archives advised the Committee that there were real risks
that medical records could be vulnerable to destruction:
The length of time medical records are retained may be dictated
by financial or auditing requirements, the medical needs of the patient,
legal considerations, and professional reasons. Health care providers
may well retain the same kind of medical records for differing periods
because there is no single authority that provides guidelines about
for how long medical records of different types should be kept.
[Senator Neal's] proposed amendment provides right of access
to the medical records held by health care providers. It does not indicate
how long records are to be retained nor that destruction for the purpose
of avoiding or deliberately obstructing access is illegal. ... Unless
there is some position on the retention of medical records there is
a real risk that they will be vulnerable to destruction which constitutes
the ultimate denial of access. [28]
4.24 The Committee raised the issue of the retention, transfer and storage
of records following the sale of a medical practice. The question related
to on the sale of a medical practice. The Australian Association of Surgeons
(AAS) informed the Committee that records are normally sold with the practice,
although they are not `worth anything and remain part of the practice'.
(Records, however, do have a `good-will' value). According to Mr John
Buntine, Past President of AAS, when a younger practitioner moves into
a practice and takes over records:
the normal thing is then that the younger doctor disposes of
them [the records] after a period that they think is appropriate. However,
there aren't any hard and fast rules. It is most difficult with respect
to children, and with respect to children it is normally considered
that the records should be kept for 10 years at least after the time
when the child becomes 18. That means if you treat somebody when they
are two, you have to keep the records for 26 years.
Another situation that happens at times is that the records just
pass on as part of the doctor's estate. There are many doctors' wives
who are the custodians of records who hunt around in garages and things
like this looking for them at times when patients want them. [29]
4.25 The Committee pursued its questioning on the issue of retention,
transfer and storage of records in order to obtain a clearer perspective
on the management of records. HIMAA was asked about the retention of records
in the public and private health sectors. HIMAA advised the Committee
that records were usually retained for seven years, that is, the statute
of limitations, plus one year:
In the public sector, in hospitals it varies from state to state.
In Victoria, for instance, it is 15 years since last attendance or 10
years after decease, unless it is a paediatric case in which case it
is the number of years at which they would have reached a certain age
... Queensland has just recently changed its retention schedule from
seven to ten years since last attendance. [30]
4.26 In relation to the destruction of records, HIMAA advised the Committee
that routines varied:
In the public sector, there are reasonably strict guidelines,
certainly in the hospital sector ... it is not always ideally carried
out ... In terms of destruction, there are fairly clear guidelines on
what you can and cannot do and how you must notify a government council
that is the terminology in Victoria as to what records you are proposing
to destroy and they actually fall outside the time frames that have
been recommended in your retention schedules. As for destruction, it
is fairly clear that they may not be pulped, they should be shredded
or destroyed completely rather than them blow down the street as loose
leaf papers. [31]
4.27 The New Zealand Health Information Privacy Code 1994 does incorporate
safeguards in Rule 5 of the Code Storage and Safeguards of Health
Information. The Code covers physical, operational, and technical security,
as well as security of transmission, disposal and/or destruction of health
records. Under the disposal or destruction of health records, record-keepers
are provided with clear guidelines on disposal. Records may be returned
to the individual concerned, controlled physical destruction by shredding
or incineration may occur, computerised records may be rendered unreadable,
methods of transferring of records is set out, and retiring practitioners
are compelled to `take proper steps to ensure that relevant records are
left with another competent practitioner'. [32]
4.28 From evidence gathered by the Committee, it was clear that in Australia
there is no comprehensive national policy or agreement on the retention,
storage, transfer and destruction of records. A piecemeal range of systems
are in place, dependent upon protocols developed within professions, various
State regulations, institutional schedules and certain legal requirements.
There is no clear-cut consensus on what is the `right' way of dealing
with records or defining the role of the record-keeper.
4.29 A record-keeper under the Privacy Act, Information Privacy Principle
4 Storage and Security of Personal Information, is the individual who
has possession or control of a record that contains personal information.
As such the record-keeper shall ensure:
(a) that the record is protected, by such security safeguards
as it is reasonable in the circumstances to take, against loss, against,
unauthorised access, use, modification or disclosure, and against other
misuse; and
(b) that if it is necessary for the record to be given to a person
in connection with the provision of a service to the record-keeper,
everything reasonably within the power of the record-keeper is done
to prevent unauthorised use of disclosure of information contained in
the record. [33]
4.30 These responsibilities only apply to record-keepers in the public
health system. No such definition or set of responsibilities are laid
out specifically for record-keepers in the private health sector. The
Committee was aware from evidence that, under certain circumstances, the
record-keeper is sometimes the spouse of a deceased medical practitioner;
records may also be held by a group practice company and thus not directly
by one medical practitioner. While such record-keepers may be responsible,
there is no onus on a person such as a spouse who inherits medical records,
to maintain, retain, or correctly store personal records, and there is
little in the way of consistent advice as to the appropriate or legal
ways in which records may be destroyed. As submissions have indicated,
individuals have been dismayed to discover that their records have been
destroyed without their knowledge and that information contained in their
records was irrecoverable.
Information Privacy Principles and Industry Codes of Practice
4.31 The Privacy Act 1988 contains eleven Information Privacy Principles
(IPPs) set out in Section 14 of the Privacy Act. IPPs are statutory principles
relating to the collection, storage and security, individual access and
correction, use and disclosure of personal information. [34]
4.32 The Attorney-General's Discussion Paper, Privacy Protection in the
Private Sector, outlined a possible way ahead and suggested that if the
privacy regime was extended, the application of IPPs would take effect
immediately. It was anticipated that there would be delayed implementation
in the operation of the enforcement provisions in relation to all IPPs,
other than for those concerned with storage and security of personal information,
and access to and correction of personal information. This delay was to
allow Industry Codes of Practice to be developed if `considered desirable'.
[35]
4.33 It was anticipated that in extending privacy protection, the Commonwealth
Government would work with the States and industry to adopt a co-regulatory
approach to privacy within the private sector in Australia, comparable
with best international practice. [36]
The desirability and necessity of extending privacy protection into the
private sector was not in question, only the development of industry-specific
Codes of Practice which would be tailored to meet the needs of a particular
part of the private sector.
4.34 Codes of Practice are essential to the extension of privacy legislation
into the private sector and are intended to serve two separate but complementary
purposes. They may `prescribe how any one or more of the IPPs are to be
applied or complied with by the record-keepers ... they may also be used
to modify the application of any one or more of the IPPs by imposing standards
that are either more or less stringent, subject to a prohibition against
any limitation or restriction of rights of access or correction'. [37]
The intention is for the development of Codes of Practice `which allow
for the principles to be tailored to meet the needs of a particular part
of the private sector'. [38] For the
private health sector, a working party to be established by the Minister
for Health and Family Services, will provide advice for the development
of a separate code. (See Paragraph 4.54).
4.35 According to the Attorney-General's Discussion Paper:
A Code would be able to elaborate upon the IPPs.
It would be used to provide concrete details on issues of relevance
to a part of the private sector.
A Code would also be able to modify the IPPs.
Where a Code was not issued the IPPs would apply.
The [privacy] regime would ... provide a consistent framework
for the entire private sector while at the same time providing flexibility
to the private sector. [39]
Voluntary codes
4.40 The AMA claimed that its voluntary code relating to access to medical
records worked reasonably well. In its submission, the AMA submitted that
patients already have access to medical records:
Neither the AMA's policies nor the common law prohibit a doctor
from allowing a patient to view documents in a medical file, make copies,
if that is appropriate, obtain a summary or an explanation, or even
make corrections. This is achieved through cooperative access where
the rights of each party is respected. [44]
4.41 `Cooperative access' was the AMA's major point. In the spirit of
cooperation, and in the spirit of the AMA's ethics, patients should have
access to their medical records. In reality, some patients (including
Ms Julie Breen) have been denied access, not because a medical practitioner
claimed `therapeutic privilege', that is, withholding information contained
in the record which might harm or alarm the patient, but because a doctor
claimed the right of ownership of the record and chose not to allow access.
4.42 In the AMA's view, however, the number of patients denied access
to their medical records who have pursued their claims is small too small
to warrant legislation. The Committee's view is that patients have a right
to access to their record and that right must be protected through legislation.
The number of patients who claim access to their records is largely immaterial
if legislation is in place.
4.43 United Medical Defence (UMD), the largest single professional indemnity
provider for doctors in Australia, supported a voluntary code and suggested
that a voluntary code should `include a suitable dispute procedure'. UMD
had indemnified Dr Williams in Breen v Williams to establish the
doctor's property. In its submission, UMD noted that it had indemnified
Dr Williams `to ensure that change in the right of access would not be
retrospective and to ensure that any access was not a common law right
but occurred only with the controls possible with legislation'. [45]
In its evidence to the Committee, UMD agreed that legislation was desirable
and referred to the United Kingdom's access to medical records legislation
which it regarded as `a useful starting point'. [46]
Referring to the efficacy of voluntary codes or legislation, UMD was equivocal:
The position ... since recently is that the United Medical Defence
supports a voluntary code and an alternative legislative response. The
effectiveness of it can be judged by having an effective disputes procedure
whether it is in the voluntary code or in the legislation. [47]
4.44 The RACGP also stated their views in regard to voluntary codes or,
as they put it, `voluntary access and voluntary agreement to access'.
Dr Bollen, Secretary General, RACGP, put the College's case thus:
This whole issue is about effective communication between two
people to make certain that the best outcome occurs in relation to that
particular person's health. Once you legislate something, you change
that relationship. [48]
4.45 Others did not hold much faith in the ability of any voluntary code.
The Chairman of the NSW Privacy Committee, expressed his general views
on voluntary codes:
I think voluntary codes are excellent for people in organisations
of integrity. They are not worth the paper they are written on for people
who wish to rort the system or who have no intention of obeying the
voluntary code. I do not think any voluntary code is much good unless
it has some significant legislative underpinning. [49]
4.46 In relation to voluntary codes, the Federal Privacy Commissioner
stated:
From my perspective there are privacy principles which cannot
be compromised in either a legislated or a voluntary outcome ... There
is enormous scope for different approaches to these issues ... while
a scheme could be developed for voluntary application in the first instance,
in my view it must still be of a standard equivalent to international
best practice and be able to be given statutory effect, if not now,
then in the future. [50]
4.47 Questioned as to whether a voluntary regime or a legislation regime
was preferable, the Federal Privacy Commissioner was adamant:
My preference is clearly for legislation. In the broader sense
of the private sector generally, I have been interested in the way the
Canadian experience has gone. This is not in relation to the health
sphere particularly, but in the Canadian experience the Canadian Standards
Association has developed a voluntary code for privacy for Canada which
has been developed as a result of consultation with all the interest
groups around the table and they have come up with an agreed voluntary
code. That code is now going to be legislated because in a sense the
opposition to it, in terms of the way it has been developed, has basically
fallen away. The industry minister in Canada is saying, although it
was starting off as a voluntary process, that it is now going into legislation.
There is no question in my mind that a legislative approach is
the one that guarantees the best rights of access and rights of privacy
in the health area. If there is going to be a legislated or a voluntary
outcome, there will need to be the development of a code, a bit like
the New Zealand one, which is more specific to the health sector, and
which deals with many of the issues that you, as a committee, have been
grappling with.
4.48 The Committee was anxious to clarify the difference between a voluntary
code of ethics such as that prescribed by the AMA, a code which would
operate within extended privacy legislation, and a code like that already
in operation in New Zealand. Referring to the Attorney-General's Discussion
Paper, the Federal Privacy Commissioner differentiated clearly between
extended privacy legislation with Information Privacy Principles (IPP's)
with legislated voluntary codes developed for specific industries as disallowable
instruments, and voluntary industry codes developed and overseen by industry
and/or professional bodies separate from legislation.
4.49 The Federal Privacy Commissioner argued that whether a voluntary
regime or a legislated regime was in place, certain basic standards were
essential:
My view is that, whether you go down a voluntary route or a legislated
route, in even a voluntary scheme, you will still have to have basic
standards of privacy, basic standards of access and correction. You
would have to have a complaints mechanism and you would have to have
sanctions. There would be choices in either scheme as to who would take
responsibility for those things. The issue then becomes the enforceability
of that. Clearly, the enforceability falls on the side of requiring
legislation.
4.50 Questioned on the effectiveness of voluntary codes, the Federal
Privacy Commissioner expressed the view that the success of a voluntary
system depended upon the extent to which people in any particular industry
or profession committed themselves to a voluntary process. If individuals
or organisations went outside a voluntary code, the industry (or profession)
would place penalties for bring the industry into disrepute. In the Commissioner's
view, however, such actions do not `carry the same weight as legislation'.
[51]
4.51 Referring to complaints mechanisms within a voluntary code, the
Federal Privacy Commissioner observed that it was necessary to ensure
access to a dispute resolution. It was also essential to know whether
the person or organisation that is being complained about has `signed
up' to the voluntary code. If not, then a complainant has no recourse.
According to the Commissioner, voluntary codes depend upon `who is in
and who is not in':
In a voluntary system, it is possible to have a complaint mechanism
that might be run by the professional body, and the individual concerned
can go to that professional body and have a complaint resolved in the
way that that industry has decided to set itself up. That happens now
across other industries that have their own internal complaint mechanisms.
If the person has not signed up, they have got nothing. If they have
signed up, there are various ways in which the profession has sanctions
on its own members. Sometimes they can enforce that and sometimes they
cannot. [52]
4.52 Others also expressed their concerns regarding voluntary codes.
The ACT Health Complaints Commissioner referred to the AMA's voluntary
code and access to medical records. Although the AMA had a clear policy
in relation to the provision of information, he noticed that from his
experience, this `had not really affected the practice of members of the
medical profession'. [53]
4.53 DHFS confirmed that they had considered the scope of a voluntary
code which, in their view, would address more than patient access to medical
records. DHFS advised that a voluntary code should:
... provide more comprehensive protection of personal health
information contained in medical records. It should establish a framework
for setting tailored standards for security of storage and transfer
of personal health information; the collection, use and disposal of
personal health information; processes for approving additional use
and disclosure of information beyond the original agreed purpose; patient
access to records and to mechanisms for correction of information on
the record; exemptions from the provision of patient access to the record;
a dispute resolution process that can be used by patients and practitioners
in relation to the implementation of the standards; fees that may be
charged under the code; and recommended periods for retention and disposal
of records. [54]
4.54 DHFS advised the Committee that all the issues above were on the
agenda of a working party to be charged with the development of a voluntary
code. DHFS indicated that the voluntary code, when developed, would build
upon the work of the Attorney-General's portfolio to assist the private
sector generally to develop and meet privacy standards. Accordingly, a
joint working party charged with developing the voluntary code would established
by the Minister for Health and Family Services, and the working party
would develop and effective system for implementing the voluntary code.
(The working party was due to commence work in May 1997 with a view to
having recommendations by the end of 1997). [55]
DHFS advised that the working party will be responsible for developing
an effective system for implementing the voluntary code. [56]
4.55 The Committee queried the proposed constitution of the working party.
Following the Committee's public hearing held in Canberra on 17 April,
the AMA indicated in a press article released on 21 April that they
envisaged the working party to include DHFS, Attorney-General's Department,
the Federal Privacy Commissioner, the profession (that is, the medical
profession) and consultation with consumers. [57]
At the hearing, however, DHFS agreed that the working party would need
to consult more broadly. At the time of writing, the membership of this
joint working party is still to be finalised.
4.56 In addition to the groups identified, the Committee indicated to
DHFS that consumer interest groups, Health Complaints Commissioners, in
addition to other professional health care providers including physiotherapists,
dietitians, occupational therapists, the nursing colleges, social workers,
and others in fields of professional health as well as the AMA, should
be consulted and have input into a code. If other professional health
care providers were to be consulted, and the Committee considered this
to be essential, it begged the question as to what records needed to be
covered under a code, whether the code was voluntary or legislated.
4.57 DHFS concurred that the issue was complex and confirmed that the
definition of what constituted a medical record had not yet been finalised.
[58] The Committee is of the view that
there would have to be a very wide definition of medical records to incorporate
all the types of record which would contain personal health information.
[59]
4.58 Following from this consideration, questions were raised regarding
DHFS's expertise and in monitoring any future code. DHFS admitted to the
Committee that monitoring a voluntary code was an activity which the Department
had little or no experience. The Committee was informed that it was not
possible to recall whether the portfolio had been involved in either developing
or implementing voluntary codes. [60]
DHFS suggested, however, that it was a `question of cooperation and involvement':
Clearly, even with voluntary codes, at the practitioner level
there will always be variations in adherence to the code, the interpretation
of the code, et cetera. It is our view that in an area like this, which
is not just a question of the strict letter of the law, but is more
about doctor-patient interaction et cetera, a voluntary code, if combined
with the proper educational arrangements and that sort of thing, is
more likely to succeed than simply imposing a new set of rules on doctors.
That is just a perspective. [61]
4.59 DHFS did not comment upon what educational arrangements were envisaged.
The Health Insurance Commission (HIC) briefly described to the Committee
its `Better Practice' program. (See below). The reference DHFS made to
the issue of the imposition of a `new set of rules on doctors' was considered.
The Committee was of the view that doctors practising in the public health
system were apparently able to cope with the idea that their medical records
could be accessed if a patient requested access. Evidence also suggested
that many GPs working in both the public and private health sectors, were
aware of access to medical provisions under FOI.
4.60 The HIC told the Committee that it might be possible to establish
a regime whereby the HIC was in a position to determine whether patients'
access to medical records was granted, or on reported cases of non-compliance.
HIC suggested that to ensure compliance, more general medical practitioners
might be encouraged to participate in the `Better Practice' program administered
by the HIC which offered financial incentives to general medical practitioners
who provide comprehensive `whole patient care'. HIC suggested that `possible
access to medical records by patients is a factor which could be included
in the eligibility criteria to participate in such a regime'. [62]
4.61 The Prime Minister's press statement on privacy legislation noted
that the Federal Privacy Commissioner would `assist business in the development
of voluntary codes of conduct and to meet privacy standards'. [63]
The Federal Privacy Commissioner's role, whether a legislative or voluntary
code approach is adopted, will be of vital importance. The Federal Privacy
Commissioner, however, expressed the following view:
I have reservations about the effectiveness of a voluntary scheme
in the health sector. In particular, a voluntary code may not provide
people with adequate opportunity to complain about and be compensated
for breaches. I think it would be unsatisfactory if a code were attached
to a disciplinary structure which could lead to a health professional
being admonished or excluded from the profession, but which would not
deal directly with the harm done to an individual and nor would it promote
systemic change. Moreover, people would still not have any legal right
to gain access to information held by health care providers in the private
sector. [64]
4.62 In the light of the negative views expressed to the Committee on
the effectiveness of voluntary codes in general, and variations in voluntary
codes relating to access to medical records in the private health sector
in particular, the Committee remained unconvinced that voluntary codes
would be observed consistently. It would appear that if voluntary codes
are not complied with in terms of providing access to medical records,
patients will have to go to a Health Complaints Commissioner or Medical
Boards for assistance. If these procedures fail, then a patient may be
faced with entering litigation. The question of sanctions or penalties
for failure to comply with a voluntary code were raised briefly, and these
are discussed below. (See Paragraph 4.88ff).
Privacy and confidentiality: electronic records and telemedicine
4.63 What is an electronic health record as it relates to the individual
patient? One definition suggests that an electronic health record of the
future will be `a collection of all the personal information, clinical
and non-clinical, relating to [their] health provided by and about a particular
health consumer to their health care providers, stored in electronic format'.
An electronic health record would be a `lifelong record containing details
of childhood immunisations, public and private hospital visits throughout
the consumer's lifetime as well as contacts with GPs, specialists, community
health services, nursing homes and psychiatric facilities'. [65]
4.64 In his keynote address to participants at a recent conference, `Whose
Health Records', which took place in Sydney in March 1997, the Attorney-General,
The Hon Daryl Williams AM QC MP, spoke on the issue of privacy protection
and information technology (IT). The Attorney-General made the following
points:
Privacy protection in the health sector also raises issues about
the growing use of health information for research purposes, and the
increasing value of health information to business such as pharmaceutical
companies and private health insurers. New technology and sophisticated
telecommunications networks increase the capacity for information sharing
and raise new questions about how to balance the competing interests
involved. There are other developments in information technology with
the potential to affect privacy within the health sector. These include
telemedicine, which I understand involves the electronic transmission
of radiological and other images, genetic testing, and smart cards.
All of these new technologies raise issues of practical importance to
the health sector. [66]
4.65 The Committee took evidence from a number of witnesses on the subject
of privacy, security, electronic records and information technology. Among
the privacy implications which the Committee considered, the issue of
patient access to electronically-stored records, and the transmission
of personal health information held in electronic records was canvassed.
4.66 Electronically-stored records are no longer regarded as new technology,
although in general medical practice many in the profession are seeking
guidance. In 1993, the RACGP issued to its members an Interim Code of
Practice for Computerised Medical Records in General Practice. The Interim
Code is currently being revised for endorsement by the College's Council
for more general use. [67] In an article
in Australian Medicine, it was suggested that for GPs, `a two to three
year period was needed to create an informed environment in general practice
in terms of both the population health model of service provision and
the uptake and appropriate use of IT' (Information Technology). [68]
4.67 Large and small businesses use sophisticated IT to create databanks
capable of storing and providing detailed statistical and profile data.
In the health sector, health information stored in this way is generally
used in `de-identified' form, that is, with all personal information removed
from access. Such data is used, for example, to provide specific epidemiological
information. The National Health and Medical Research Council (NHMRC)
and other medical research institutions make increasing use of electronically-stored
information and have guidelines and protocols for the use of massed de-identified
data. The NHMRC guidelines were issued in 1991 following approval under
s. 95 of the Privacy Act. [69]
4.68 The former Federal Privacy Commissioner had spoken extensively on
the matter of electronic technology and privacy issues. In a paper delivered
in 1996 entitled, `Privacy Issues Arising As “I.T. Happens”',
the Federal Privacy Commissioner made the point that, traditionally, in
the health sector, `individuals have assumed that their information is
only accessed by their doctor/health care provider'. [70]
IT and electronic records have enabled far greater access to personal
health information although, ironically, not necessarily for patients
in the private health sector:
Increasingly, numerous demands are being made on health data.
It is useful to draw a distinction between demands for access to data
for primary purposes (the provision of health care to the individual)
and demands for secondary uses (such as research, public health and
outcome monitoring. The use of identified information for purposes other
than the direct health care is a major area of growth and requires careful
management to ensure that the privacy of health information is not eroded.
[71]
4.69 The Federal Privacy Commissioner observed that there are `numerous
public health pressures to use personal health information', and referred
specifically to medical and epidemiological researchers, and to public
health initiatives such as recall systems, screening programs, registers
of immunisations, regional databases recording people with certain conditions.
[72] These requirements for personal
health information are legitimate as long as the individual patients involved
know what information is held about them, and who wishes to access that
information, beyond themselves. The important point made in the (then)
Privacy Commissioner's paper was that it is a fundamental privacy principle
that individuals have a right to know what information an organisation
[or medical practitioners and other health professionals] holds about
them. [73]
4.70 Referring to the UK Access to Health Records Act 1990, and to the
subsequent guidelines issued by the UK Department of Health on the protection
and use of patient information in an electronic environment, it was noted
that the guidelines were prepared after wide consultation with patients
as well as professional representatives. The UK Health Service Guidelines
`The Protection and Use of Patient Information' (1996) sets out patients'
right of access to their own records which are established in the Patient's
Charter. There are also rights of access under the Data Protection Act
1984, the Access to Personal Files Act 1988, and the Access to Medical
Reports Act 1988.
4.71 In summary, the UK Guidelines provide specific guidance on the circumstances
in which patient information may be passed on, the need to keep patients
informed about the uses to which information on them is put, and patients
right of access to their own records. It also sets out when and how personal
information may be used for the creation of aggregated and `anonymised'
[de-identified] statistics for health service planning, monitoring of
public health, and medical research.
4.72 Acknowledging the growth of information technology, the UK Data
Protection Act 1984 specifies that all `personal data' (including patient
information) relating to living individuals that are held on a computer
system are subject to the Act. The Act establishes eight principles which
may be compared with IPPs in the Australian Privacy Act. Principle 7 states
that: an individual shall be entitled (a) at reasonable intervals and
without undue delay or expense: (i) to be informed by any data user whether
he holds personal data of which the individual is subject; and (ii) to
access any such data held by a data user; and (b) where appropriate, to
have such data corrected or erased. Principle 8 of the Act establishes
that: appropriate security measures shall be taken against unauthorised
access to, or alteration, disclosure or destruction of, personal data
and against accidental loss or destruction of personal data.
4.73 On the issue of security in an electronic environment, the Committee
was informed by HIC (Vic) that lack of patient access to their records
has been identified as a major barrier to public acceptance of the use
of electronic means of communications in the health sector:
Patient access itself has been identified as a means of increasing
patient comfort through electronic dissemination of their records. Basically,
you cannot have absolute security in an electronic environment. There
are a much broader range of players interested in the much broader range
of information that can be collated, manipulated and disseminated in
an electronic environment. Security is not something that can be achieved
absolutely. The accuracy of the record is, therefore, a second-best
to absolute security. Patient access to their records is obviously a
critical way to achieve accurate records. [74]
4.74 HIC (Vic) informed the Committee that in the UK, legislation to
enable patient access to electronic records occurred before legislation
enabling patient access to manually created records an indication of general
community concern about electronically created and maintained files about
people. [75]
4.75 The Chairman, NSW Privacy Committee, expressed a lack of confidence
in current practices relating to electronic records:
I do not think that one can have any degree of confidence at
the moment that medical records held in electronic form can be regarded
as anywhere near as secure as the old fashioned handwritten record stored
in a locked cupboard at the end of the day. One of the few things that
one can say about them is that the right of people to look at those
records is more likely to be able to keep them up to the mark than the
denial of access. After all, if you have information on a screen that
you can show people when they come into your medical practice on a regular
basis, you can say, “Just check this; is this in fact you”?
I think there is much more security and value in that than many of the
other forms. For example, I do not think in major hospitals or very
busy surgeries that, unless people have the most elaborate and expensive
security connected with their electronic records, they can be properly
maintained in the way in which one would like. After all, if teenage
hackers can get into NASA and the American defence department, it is
not going to take them very much to get into Royal Prince Alfred Hospital.
[76]
4.76 The Chairman, NSW Privacy Committee, also referred to the beneficial
uses of electronic records:
People are extraordinarily mobile these days around Australia,
particularly with electronic records. If people have an accident in
one state and somebody needs to get access to sensitive medical information
about them which is stored in electronic form and they have the capacity
to get into that, that is beneficial to the patient, but it needs to
be on the basis that there are some nationally acceptable rules about
it. [77]
4.77 The Chairman, NSW Privacy Committee, made reference to the wide
range of people who already have access to medical records. The point
was made that while an individual may be denied access to his/her record,
others may have access:
[W]e are talking about tens of thousands of people who have access
to the information, yet there are some people quibbling about whether
the person about whom the information is held should be the last in
the queue and actually find out that information information which lots
of other people have access to with sometimes very few safeguards.
Everybody else has access to it [patient information]. I do not
know how many people these days work for the Health Insurance Commission,
but people are going around and doing spot checks on procedures and
how many were done. Registers are being established all the time. The
Commonwealth is proposing proper registers in relation to child immunisation.
We have registers in relation to types of cancers. We have registers
in relation to pap smears. We have registers in relation to HIV status.
All of them are accessible to hundreds if not thousands of people throughout
bureaucratic departments and any of these larger organisations. [78]
4.78 Referring to the privacy requirements demanded by the European Union
under the Organisation for Economic Cooperation and Development (OECD)
Guidelines on the Protection of Privacy and Transborder Flow of Personal
Data, [79] the Chairman, NSW Privacy
Committee, argued strongly that privacy was a an issue of major importance
and was clearly the Commonwealth Parliament's responsibility:
I think that privacy is such an issue, and the nature of the
exchange of information around the country is such a major issue that,
unless there is a uniform national approach to these matters, it will
be largely a self-defeating exercise. This is one of the clear areas
where the Commonwealth parliament should legislate, and I think there
are obligations contained in section 17 of the international covenant
in this regard. Guarantees of privacy and access to information which
flow from that means this is a Commonwealth parliamentary responsibility.
[80]
4.79 The Committee was aware that European privacy requirements will
soon impinge directly upon Australia. The Committee was concerned that
by not ensuring extension of privacy legislation into the private sector,
including the private health sector, Australia may be excluded from vital
exchanges of information.
4.80 Telemedicine was an issue which the Committee raised with witnesses.
Currently, the House of Representatives Standing Committee on Family and
Community Affairs is conducting its own inquiry into Health Information
Management and Telemedicine. The inquiry's terms of reference sought evidence
on the ways to maximise developments in information management and information
technology in the health sector to improve health care delivery and to
increase Australia's international competitiveness. The House of Representatives
inquiry focuses on a range of issues relating to health information management
and differs significantly from the Senate's inquiry which, at its focus,
has inquired into the appropriate scope of Commonwealth legislation ensuring
access to medical records.
4.81 One term of reference of the House of Representatives inquiry does,
however, have importance in relation to access to medical records held
in electronic form. This reference deals with the `ethical, privacy and
legal issues which may arise with wide application of [this] technology
and transfer of confidential patient information'. The House of Representatives
Committee report is expected in the last quarter of 1997.
4.82 The Attorney-General spoke about telemedicine in his keynote address
referred to earlier in Paragraph 4.64. Telemedicine has been defined
by DHFS to mean `the direct use of electronic communication as part of
clinical practice, the actual hands on diagnosis'. Further differentiated
it means, `using technology when you are trying to make a clinical step,
a diagnosis, actually treat somebody, as opposed to information management
which is just the moving of information and data around, and IT being
the vehicle for moving those sorts of things around, be it by phone lines,
multi-media cables, satellites, faxes or whatever'. [81]
4.83 The Committee was interested to know more about the use of telemedicine
in general medical practice and hospitals, and the appropriate sorts of
computer programs that would be needed to ensure that, (a) privacy aspects
were considered, (b) that documents could not be altered when they should
not be altered, and (c) the security of transmission of those documents
transmitted through electronic means, such as remote hospitals sending
down ECGs to teaching hospitals. It was noted that while medical practitioners
are able to freely transmit patient information for diagnostic purposes
down telephone lines through modems, or by other means, patients may not
have access to that same information. [82]
4.84 The Committee was assured to learn that hospitals in the private
sector were aware of the potential problems associated with telemedicine
and electronic records. The Australian Private Hospitals Association (APHA)
advised that in terms of record keeping, most records were still done
by pen and paper because of its convenience when walking around a ward.
There is investigation into tablet style computers but, to date, APHA
was unaware of any hospitals in Australia where they are common practice.
APHA advised that some hospitals are performing trials with what data
can be collected in that computerised form. [83]
While acknowledging that such technology had great advantages, the Committee
expressed some concerns that possibilities for information leakages, security
breaches and interference with patient data might arise.
4.85 APHA advised the Committee that in their experience, hospitals are
`data security aware' and that as new information technology is implemented,
security processes are integral to the process of implementation:
For example, there are currently investigations into electronic
data interchange for the hospital case mix protocol that is required
by legislation to be sent from hospitals to insurance funds. [84]
There is quite a lot of work going on in designing message structures
and so on. Encryption is a very large part of the deliberations of the
committee that is looking at the EDI message structures. They tend to
go hand in hand as the technology is used. The security is also investigated
and assessed and protection measures are put in place. [85]
Privacy and access: appeals and sanctions
4.88 Under the content of agreement set out in the amendment proposed
by Senator Neal, medical practitioners were, with certain exceptions,
to provide patient access to medical records. Such provision was mandatory
and Medicare payments would not be payable in respect of a professional
service rendered if the provider failed to comply with conditions of the
agreement. [89] Review of decisions
in relation to access matters were to be referred to the Administrative
Appeals Tribunal or the Federal Court. The amendment made no provision
for penalties or sanctions for breaches in privacy.
4.89 The Human Rights and Equal Opportunity Commission (HREOC) recently
noted in its submission made to the House of Representatives inquiry into
Health Information Management and Telemedicine, that:
Protection of the privacy of personal health information is a
particularly significant issue due to the sensitivity of this information;
the potential for unlawful or unfair discrimination if it is used or
disclosed inappropriately; high community expectations of confidentiality;
and the value in terms of accurate diagnosis and treatment in people
having confidence that they can reveal anything to a health care provider
and that it will go no further. [90]
4.90 The HREOC, while not commenting upon the imposition of specific
sanctions or penalties for breaches in privacy and confidentiality, recommended
that:
Personal health information should ideally be subject to more
stringent standards of protection than is currently provided by the
current Information Privacy Principles. [91]
4.91 In its submission to the Senate's inquiry into access to medical
records, the ALRC suggested to the Committee that in its deliberations
on an access to medical records regime, it should consider the imposition
of criminal sanctions for unauthorised disclosure of patient information.
Referring to the ALRC's various inquiries, the ALRC informed the Committee
that it had become aware of a great deal of unauthorised disclosure, not
necessarily from doctors, but from health care providers in general. ALRC
advised that the problem was particularly acute, for example, in rural
regions in small communities where patients deal with health care providers.
Leakages of information occurred and information often became known in
a small community. [92]
4.92 Particular reference was made to health information relating to
individuals with an intellectual or psychiatric disability. The ALRC's
reasoning for recommending sanctions was that there were high costs to
individuals who had their personal medical information disclosed. The
results of unauthorised disclosure could have deleterious effects upon
an individual in employment, in relationships and elsewhere. [93]
Criminal sanctions might better ensure privacy protection because, `the
cost to individuals can be so very serious'. [94]
4.93 DHFS was in favour of educational measures and a tight system of
industry self-regulation rather than what it termed, `more coercive measures'.
DHFS pointed to precedents in the private sector where voluntary codes
for consumer protection (including privacy protection) had been developed,
facilitated by the Australian Consumer and Competition Commission, for
example, through the Telecommunications Industry Ombudsman. Reference
was made to the finance sector codes of practice and conduct which had
`well developed dispute resolution mechanisms enforced by independent
ombudsmen or dispute reference centres'. DHFS suggested that schemes such
as this provide a `model for ensuring a process of review of compliance
with industry standards'. [95]
4.94 Complaints handling mechanisms in the private health sector have
improved considerably since the establishment of Health Care Complaints
Commissions. [96] Commissioners are
able to investigate complaints and negotiate on behalf of patients in
matters related to access to medical records. However, Commissioners are
given no powers of sanction by way of imposition of penalties, or other
enforceable mechanisms for resolving disputes about access, or for breaches
of patient confidentiality. These matters are generally referred to medical
and allied registration boards for investigation and adjudication.
4.95 The New Zealand Health Information Privacy Code 1994, a code of
practice which applies specific rules to agencies in the health sector
to better ensure the protection of individual privacy, derives its powers
from the Privacy Act 1993 (NZ). [97]
4.96 Under the UK Access to Health Records Act 1990, applications may
be made to the courts if it is found that the holder of a health record
has failed to comply with any requirements of the Act. [98]
4.97 The ACT Government is currently considering legislation for health
records held in the public and private sector and will apply to all health
services. According to the ACT Government's Position Paper released in
May 1997, the ACT legislation will, if passed, include all the Information
Privacy Principles (IPPs) contained in the Commonwealth's Privacy Act.
Under the proposed legislation there will be offences under the legislation,
although it is stressed that `generally, this legislation is not seen
as punitive, but rather as establishing a framework for good relations
and certainly so far as privacy of and consumer access to their health
records is concerned'. [99]
4.98 Offences under the ACT legislation will cover:
- destruction of health records to avoid access;
- failure to produce a record on the request of a consumer without an
appropriate reason;
- obstruction or failing to provide access once a determination is made
that access is appropriate; and
- inappropriate breach of confidentiality in relation to personal information
on a health record. [100]
4.99 The ACT Government appears mindful that there are a number of possible
options for determining whether a record-keeper's decision to deny an
applicant's access to their health record was appropriate. The Position
Paper suggests that may be a role for the Federal Privacy Commissioner,
or using various professional registration boards, or the magistrate's
court to enforce the legislation. Whether any sanctions or penalties are
to be considered is not canvassed in the Position Paper.
4.100 It is proposed, however, that the ACT Commissioner for Health Complaints
will be given statutory powers to make findings about appeals by consumers
or health service providers on access and privacy questions under the
proposed legislation, and to make binding determinations in relation to
decisions under the legislation. Any appeal against the Commissioner's
determinations would then go to the ACT's Administrative Appeals Tribunal
(AAT). The AAT would have power to hear matters afresh, and make its own
decision, which would stand in place of any previous determination by
the Commissioner. [101]
4.101 In any national legislative regime providing patient access to
medical and/or health records, it is likely that the Commonwealth's Administrative
Appeals Tribunal would take on a review role and, when necessary, would
refer certain matters to the Federal Court on questions of law arising
from any decision of the Tribunal. Under an access regime which involved
Industry Codes of Practice under the extension of privacy legislation,
the Federal Privacy Commissioner would also have a role. Currently, under
the Commonwealth's Privacy Act, where a matter cannot be resolved by the
Privacy Commissioner's internal processes, parties have a right to a fresh
hearing, although not upon the Privacy Commissioner's determination.
4.102 Under the amendment proposed by Senator Neal, the consequences
of breaches of agreement would result in the withholding of Medicare benefits,
not more than $1000 for an individual provider, and not more than $5000
for an incorporated provider. [102]
4.103 The imposition of penalties for refusal to give a patient access
to their medical records, or for breaches in privacy and unauthorised
disclosure is a significant step to take, and concerns were duly expressed.
In New Zealand, compensation of up to $200 000 (NZ) has been set
in legislation in the Privacy Code to ensure compliance.
4.104 Another approach which could be adopted is one already in operation,
that is through Health Care Complaints Commissions which reports on cases
which have reached the `tribunal' stage. Such reports reveal the names
of medical practitioners and other health care providers who have breached
codes of practice. This exposure is undoubtedly a professionally damaging
sanction, but it may have a salutary effect upon other professional health
care providers.
4.105 The Federal Privacy Commissioner suggested that the provisions
of any scheme should be able to encourage systemic change in practices
where experience suggests this is warranted.
Fostering individual disputes is inefficient if the same sort
of preventable disputes arise again and again. There needs to be feedback
from individual cases to the provisions of the scheme ... This would
assist in bring about the systemic and cultural change necessary to
ensure easy access to records where appropriate ... Education has an
equally important role to play in promoting such change. [103]
4.106 The Committee has taken account of the wide range of views expressed
on the matter of sanctions and penalties as well as on appeal mechanisms
and breaches, and recommends a legally binding scheme with sanctions.
Recommendation 4: The Committee recommends that any access to
medical and other health records legislation should be capable of imposing
penalties and sanctions on medical and health care providers who fail
to comply with the provisions of the legislation.
Recommendation 5: The Committee recommends that the Federal Privacy
Commissioner investigates the privacy implications of record keeping in
the private sector, including the obligations of the `record-keeper',
retention, storage, transfer and destruction of medical and health records.
This investigation to be conducted without delay as an essential adjunct
to the drafting of access to medical and other health records legislation.
Recommendation 6: The Committee recommends that the Commonwealth
moves expeditiously to draft legislation for national access to medical
and other health records legislation through the creation of extended
privacy legislation to cover the private health sector, to avoid conflicting
State and Territory access to medical and other health records legislation.
Recommendation 7: The Committee recommends that industry regulations
be drafted for inclusion in extended privacy legislation to cover the
private health sector.
Recommendation 8: The Committee recommends that research be conducted
on the potential for interference to medical and other health records
in the advent of electronic records and telemedicine, and that privacy
legislation Information Privacy Principles and Codes of Practice take
this into account and include the necessary safeguards.
Recommendation 9: The Committee recommends, in line with a recommendation
made by the Federal Privacy Commissioner, that a phase-in period should
apply to allow providers and consumers to become familiar with the legally-binding
scheme, before any party faces enforceable sanctions or is charged under
the provisions of the scheme.
Recommendation 10: The Committee recommends that the Federal
Privacy Commissioner should have power to investigate and conciliate complaints
and seek enforceable assurances against repetition of breaches of a health
privacy code, the Privacy Act, and national legislation granting access
to medical and other health records. Where a breach is found to have occurred,
the Federal Court should be able to award compensation, issue restraint
orders and impose penalties for serious breaches of privacy obligations.
[104]
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FOOTNOTES
[1] Telecommunications Act 1997, Part
6, Div. 5 s 134: Part 13, Div.5 s 309.
[2] Privacy Protection in the Private Sector,
Discussion Paper, Attorney-General's Department, September 1996, p.3.
[3] `Privacy Legislation', Press Release, Prime
Minister, 21 March 1997.
[4] The specific section of the Telecommunications
Act 1997 - Division 5 Part 13 s 309 Record-keeping requirements, refers
to the Privacy Commissioner's role.
[5] Community Attitudes to Privacy: Information
Paper Number 3, (HREOC), August 1995 [Ref. No. IP.3].
[6] Eighth Annual Report on the Operation
of the Privacy Act: for the period 1 July 1995 to 30 June 1996,
HREOC, AGPS, 1996, p.2.
[7] ibid, p.1.
[8] `Privacy Groups Slam U-turn', The Australian,
8 April 1997, citing groups including the Australian Privacy Charter Council,
American Express, Australian Computer Society, Australian Consumers' Association,
Australian Privacy Foundation, Communications Law Centre, Electronic Frontiers
Association, Consumers' Telecommunications Network.
[9] Public statements have been issued by Ms
Moira Scollay, Federal Privacy Commissioner, and Mr Chris Puplick, Chairman,
NSW Privacy Committee, in April 1997 putting forward their views on the
extension of privacy protection into the private sector.
[10] `Privacy plan for private sector urged',
Press Release, The Law Society of New South Wales, 26 March 1997.
[11] `Privacy protection in Australia': Background
information from the Federal Privacy Commissioner, April 1997, p.1.
[12] ibid, p.2.
[13] Transcript of Evidence, pp.178-9
(Federal Privacy Commissioner, HREOC).
[14] `Privacy protection in Australia': Background
information from the Federal Privacy Commissioner, April 1997, p.1.
[15] `Privacy Groups slam U-turn', Australian,
8 April 1997.
[16] Transcript of Evidence, pp. 22-3
(ALRC).
[17] Submission No.59, p.1 (South Australian
Government).
[18] ibid.
[19] ibid, p.2.
[20] Transcript of Evidence, p.2 (PIAC).
[21] See, Submission No.55, p.2 (Chronic Illness
Alliance).
[22] Transcript of Evidence, p.6 (HIC
Vic).
[23] See, for example, Australian Medical Association
(NSW Branch), The art of maintaining good records. A more recent
article by Dr Craig Lilienthal, Medico-Legal Consultant to the MDU, entitled
`Medical Records - the Eleven Commandments', appeared in The
Journal of the Medical Defence Union, January 1997, pp.7-8.
[24] Dr Hugh Aders, Professional Services Division,
The MDU, `Ownership of Medical Records', Journal of the MDU, January
1997, p.14.
[25] ACTCHC, Additional Information, 9 April
1997, p.35.
[26] ALRC, Additional Information.
[27] Submission No.16, p.3 (HIMAA).
[28] Submission No.43, p.6 (Australian Archives).
[29] Transcript of Evidence, pp.41-42
(AAS).
[30] Transcript of Evidence, p.98 (HIMAA).
[31] Transcript of Evidence, pp.98-99
(HIMAA).
[32] Health Information Privacy Code 1994 (NZ),
Rule 5: Storage and security of health information, pp.17-18.
[33] See Appendix 3: Information Privacy Principles
The Privacy Act 1988.
[34] ibid.
[35] Privacy Protection in the Private Sector,
Discussion Paper, Attorney-General's Department, September 1996, p.12.
[36] ibid, p.1.
[37] Moira Paterson, `Privacy Protection in
the Private Sector: The Federal Government's Discussion Paper', AIAL
Forum, No. 12, 1997, p.7.
[38] ibid.
[39] Privacy Protection in the Private Sector,
Discussion Paper, Attorney-General's Department, September 1996, p.13.
[40] ibid, pp.14-15.
[41] In the Telecommunications Act 1997,
non-compliance with an industry code may result in the person being issued
with a direction to comply by the Australian Communications Authority
(ACA). Part 6 Industry codes and industry standards, Division 1 Simplified
outline. Telecommunications Act 1997. The ACA is to monitor,
and report each year to the Minister on significant matters relating to
the performance of carriers and carriage service providers). Part 1
Introduction, section 5, Telecommunications Act 1997.
[42] New South Wales has a Privacy Committee
Act 1975. The committee performs an Ombudsman-type role but does not
enforce specific privacy legislation. Queensland has no privacy legislation.
The Queensland Privacy Committee Act 1984, lapsed when the sunset
clause of the Act took effect in 1991. Victoria has had no privacy legislation.
There have been various attempts at legislation, the most recent was a
recommendation in 1991. Tasmania has no privacy legislation. A bill was
introduced in 1974. South Australia has no privacy legislation. Attempts
were made in the 1970s and a new bill, introduced in 1991, failed to pass.
Western Australia and Northern Territory have no privacy legislation.
The Australian Capital Territory has no privacy legislation, other than
the provisions noted above.
[43] `Privacy Chief to take hands-on role',
Financial Review, 18 April 1997.
[44] Submission No.34, p.15 (AMA).
[45] Submission No.31, p.2 (UMD).
[46] Transcript of Evidence, p.58 (UMD).
[47] ibid, p.59.
[48] Transcript of Evidence, p.64 (RACGP).
[49] Transcript of Evidence, p.51 (NSW
Privacy Committee).
[50] Transcript of Evidence, p.179 (Federal
Privacy Commissioner, HREOC).
[51] ibid, p.189.
[52] ibid, pp.188-190.
[53] Transcript of Evidence, p.191.
[54] Transcript of Evidence, p.206.
[55] Transcript of Evidence, p.213.
[56] ibid, p.207.
[57] `Voluntary records code', Australian
Medicine, 21 April 1997, p.4.
[58] Transcript of Evidence, p.216 (DHFS).
[59] ibid, p.217.
[60] Transcript of Evidence, p.218 (DHFS).
[61] ibid, p.219.
[62] Transcript of Evidence, p.209 (HIC).
[63] `Privacy Legislation', Prime Minister's
Press Statement, 21 March 1997.
[64] Submission No.25A, p.11 (Federal Privacy
Commissioner, HREOC).
[65] Josephine Raw, `What is an Electronic
Health Record?', Health Issues, 49, December 1996, p.16.
[66] Attorney-General, Keynote Address,
Whose Health Records?, Sydney, 7 March 1997, p.7.
[67] RACGP, Additional Information.
[68] `IT training needed', Australian Medicine,
March 1997, p.3.
[69] NHMRC guidelines relating to the protection
of privacy in the conduct of medical research enables Commonwealth agencies
to lawfully disclose personal information to a third party for the purpose
of medical research where the research protocol has been approved an Institutional
Ethics Committee. Mr K O'Connor, Federal Privacy Commissioner, `Information
Privacy Issues in Health Care and Administration', Inaugural National
Health Informatics Conference, Brisbane 1993, p.4.
[70] Privacy Issues Arising As `I.T. Happens',
Kevin O'Connor, Federal Privacy Commissioner, 19-21 August 1996, Melbourne,
p.1.
[71] ibid, p.3.
[72] ibid, p.4
[73] ibid, p.5.
[74] Transcript of Evidence, pp. 5-6
(HIC Vic).
[75] ibid.
[76] Transcript of Evidence, p.50 (NSW
Privacy Committee).
[77] ibid, pp.51-2.
[78] ibid, p.52.
[79] OECD, Paris, 1980.
[80] Transcript of Evidence, pp.51-2
(NSW Privacy Committee).
[81] Dr Ian Heath (First Assistant Secretary,
Information Services Division, Department of Health and Family Services),
House of Representatives Standing Committee on Family and Community Affairs,
Inquiry: Health Information Management and Telemedicine, Canberra, 4 September
1996, Official Hansard Report, pp.8-9.
[82] Transcript of Evidence, p.52 (NSW
Privacy Committee).
[83] Transcript of Evidence, p.163 (APHA).
[84] The Hospital Casemix Protocol (HCP) data
collection, required by health insurance changes contained in the Health
Legislation (Private Health Insurance Reform) Amendment Act 1995,
is becoming well established. Registered health funds are required to
give DHFS specified de-identified data in respect of every episode of
hospital inpatient treatment for which a charge is billed to a fund. The
HCP data collection provides a means of monitoring the effect of health
reforms. Australian Casemix Bulletin, Vol 8, No. 4, March 1997,
p.3, (Commonwealth Department of Health and Family Services).
[85] Transcript of Evidence, pp.164-5
(APHA).
[86] Transcript of Evidence, p.50 (NSW
Privacy Committee).
[87] `Telemedicine and Crime', Trends and
Issues, Australian Institute of Criminology, No. 69, April 1997.
[88] ibid, p.5.
[89] Proposed amendment, 19AD Content of agreement
(5), Health Insurance Amendment Bill (No 2 ) 1996.
[90] Submission No.118, p.489, Human Rights
and Equal Opportunity Commission, (September 1996), made to the House
of Representatives Standing Committee on Family and Community Affairs,
Inquiry into Health Information Management and Telemedicine.
[91] ibid.
[92] Transcript of Evidence, p.25 (ALRC).
[93] ibid, p.26.
[94] ibid.
[95] Transcript of Evidence, p.207 (DHFS).
[96] South Australia has no Health Care Complaints
Commissioner but complaints are dealt with through the South Australian
Ombudsman. Northern Territory is in the process of establishing a Health
Care Complaints Commission.
[97] Privacy Act 1993 (NZ), Part 3,
(8) Complaints of breach of code, Part VIII applies: This enables individuals
to complain to the Privacy Commission if they believe their privacy has
been infringed; provides that civil proceedings may be brought before
the Complaints Review Tribunal where complaints have not been resolved;
empowers the Tribunal to grant a range of remedies, such as; damages up
to $200,000 (NZ); restraining orders; orders requiring certain actions
to be taken to put things right; declarations.
[98] The court may order the holder to comply.
The jurisdiction is conferred by Section 8 (Supplemental) of the Act -
Applications to the court are exercisable by the High Court, or a county
court or, in Scotland, by the Court of Session or the sheriff. No penalties
are described in the Act.
[99] Health Records Privacy and Access:
An ACT Government Position Paper, Department of Health and Community
Care, Australian Capital Territory Government, May 1997, p.42.
[100] ibid, pp.41-2.
[101] ibid.
[102] Proposed amendment, 19AD (8). Consequences
of breach of agreement, Health Insurance Amendment Bill (No. 2 )
1996.
[103] Submission No.25A, p.8 (Federal
Privacy Commissioner HREOC).
[104] This recommendation is based upon Recommendation
23 put forward by the Public Interest Advocacy Centre (PIAC) in its report,
Whose Health Records? op. cit, p.6.