REPORT ON ACCESS TO MEDICAL RECORDS
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CHAPTER 2 - IMPETUS FOR REFORM ACCESS TO MEDICAL RECORDS
Impetus for legislation: Implications of the Breen v Williams High Court
Decision, 1996
2.1 The High Court of Australia has confirmed that the common law is
currently the only binding law applying to medical records held in the
private sector and does not place any obligation on the holder of the
medical record to make that record available to a patient. [1]
The Court clearly stated that medical records were the sole property of
the doctor and that they held all rights associated with ownership. The
Court's decision confirms that patients in the private health sector suffer
from a legal disadvantage. Patients whose records are created and reside
in the private health care sector do not enjoy the same rights as patients
whose records reside in the public health sector.
2.2 Consumers of government-funded and/or public health care services
in Australia have rights of access to their medical records under Freedom
of Information legislation (FOI). [2]
The objective of FOI is to give the right of access to information held
in the pubic record and the only excuse for not complying with this legal
obligation is that an agency holding such information bears the onus of
proving that a document is exempt. [3]
Under certain State regulations governing private hospitals, day procedure
centres and nursing homes, access to medical records is also ensured.
[4] Consumers who are treated in publicly
funded hospitals, community health centres, clinics, receive publicly
funded psychiatric services, or whose medical records are held by government
agencies, are able to request access to their medical records under FOI.
Medical practitioners in the public system prepare their medical records
in the knowledge that a patient can obtain access under FOI and many doctors'
practices already bridge both the private and public sectors. [5]
2.3 Exemptions to access are, nevertheless, applied in the public health
sector on two main grounds. Consumers may be refused access to their medical
records held in publicly funded institutions or agencies if it is believed
that it would be detrimental to the `mental or physical health' of the
consumer, [6] or if giving access would
`involve unreasonable disclosure of information concerning the personal
affairs of any person', or may place the community at risk. [7]
2.4 In recent years, with the exception of South Australia and Northern
Territory, Health Complaints Commissioners have been appointed in States
and Territories to cover both the public and private sector. [8]
Each Commission operates under statutory guidelines which encourage `reasonable
access' to information in health records, except where prohibited by law
or where the information is in personal notes of the health service provider.
In its report, Whose Health Records, the Public Interest Advocacy Centre
(PIAC), pointed out that there is no consensus on what constitutes `reasonable
access'. [9]
2.5 In the private health sector, patients requiring access to their
medical records for any purpose must rely upon the cooperation of medical
practitioners (and other health service providers) to provide such access.
Viewed from a patient's need for information, access to a medical record
may simply involve initially sighting the record and obtaining a verbal
and/or written explanation about the contents of record. Other patients
may require full copies of the record.
2.6 The Australian Medical Association (AMA) has issued guidelines in
1993 in relation to patient access to medical records. The AMA encourages
its members to `inform' patients about the contents of their medical records.
It should be noted that approximately 50 per cent of registered medical
practitioners are members of the AMA, thus the AMA's voluntary guidelines
cover only half of the registered medical profession. In its submission
the Committee was advised that the AMA:
encourages cooperative access to medical records by patients.
It does not prohibit doctors from permitting their patients to view
records and even copy those records, where the doctor
deems it appropriate. [10]
2.7 The AMA guidelines state:
Where a doctor agrees to provide information to a patient from
the contents of records concerning the patient's medical treatment :
(a) The patient should be informed of all relevant factual information
contained in the record.
(b) However, the doctor's opinions and conclusions recorded in
the medical record will be released only at the discretion of the doctor
concerned. [11]
2.8 The Royal Australian College of General Practitioners (RACGP) `encourages
medical practitioners to provide patients with a health summary containing
accurate and objective health information including test results'. [12]
Access to medical records in the private health sector is always at the
discretion of the medical practitioner concerned, and, if access is refused,
patients may request assistance and advice from the relevant Health Complaints
Commissioner or State Ombudsman.
2.9 The High Court's decision removes any ambiguity surrounding the issue
of ownership of private sector medical records and confirms that records
remain the intellectual property of the medical practitioner who has written
them. In order to obtain access to a personal medical record, if consent
to access is refused after all other avenues have been explored (such
as utilising a Health Complaints Commissioner), a patient may then resort
to civil action. Legal proceedings are commenced by issuing a writ to
permit the process of `orders of discovery' to proceed after which documents
may be subpoenaed. [13] The necessity
to resort to legal proceedings inevitably places at risk any relationship
of trust which may have been established between patient and doctor.
2.10 In the context of a review of the adversarial system of litigation,
the Australian Law Reform Commission (ALRC) has noted its concerns relating
to the `damaging effect' of legal proceedings. The ALRC notes that features
of the `adversarial system have been criticised as contributing to (among
other things) excessive costs and delays, overservicing, lack of accountability
and an unduly confrontational approach to dealing with disputes'. [14]
The ALRC advised that they had already received a number of submissions
to their inquiry dealing with the problems of discovery in litigation.
In particular, submissions have referred to `the enormous public cost
in what is admitted by most people to be a crisis-laden litigation system
for people having to institute a claim in order to find out whether they
should be in the courts at all'. [15]
2.11 Patients in the private health system, denied access to their medical
records and forced to resort to litigation, are thus confronted with all
the steps involved in the legal discovery process. FOI legislation which
is not available to patients in the private health care system, is generally
assumed to be a safeguard and a means of access to medical records for
patients in the public health system. The Mental Health Legal Centre (MHLC)
made the point that even for those people whose records are subject to
FOI legislation, `the very real concern [is] that the power to refuse
to provide records will be exercised in a way which denies any real provision
of information can be a strong deterrent'. [16]
2.12 Evidence submitted to the Committee suggests that FOI is limited
when exemptions are claimed. [17] MHLC
asserted that people with psychiatric disabilities who have received or
receive treatment in the public health sector, have also been denied access
to their medical records on the basis that disclosure might be `prejudicial
to the physical or mental health or well-being of the person', a refusal
which is `exercised widely'. [18] The
exercise of exemptions may result in litigation and exemptions may also
be exercised in a way which actively discriminates against one group of
patients.
2.13 MLHC referred to the growing practice of mixing public and private
health sector medicine and the referral of patients to the private health
sector who, by the nature of such referrals, become effectively `disqualified'
from access to medical records under FOI:
The problem of lack of access in the private sector is compounded
by the increasing referral of clients away from public services to the
private sector. ... As a group particularly disadvantaged by assumptions
about the impact of disclosure, clear legislative rights are the only
solution. [19]
2.14 In the Breen v Williams appeal, the High Court was not asked to
adjudicate on FOI. What some evidence given to the Committee strongly
suggests, however, is that people using psychiatric services often face
particular difficulty in gaining access to their medical records, [20]
a point affirmed in PIAC's report, Whose Health Records. [21]
2.15 MHLC is a Victorian-based organisation and its clients' adverse
experiences may reflect practice in Victoria. The Chair of the NSW Privacy
Committee commented in evidence that there had been `no problem and no
difficulty' in access to records for psychiatric patients within the public
health system in NSW. There are clearly differences in access experienced
from State to State. Federal legislation would remove these differences
under one nationally observed regime.
2.16 The High Court in the Breen v Williams judgment called for a legislative
response. However, in the continuing legal hiatus, the ability of private
health sector patients to gain access to their medical records has not
been positively assisted. Evidence taken by the Committee suggests that
while representatives of peak medical associations agree in principle
with the concept and general practice of providing patients with explanations
and health summaries, patients' access to their medical records will continue
to be impeded while medical practitioners utilise the common law and the
assertion of copyright and intellectual property rights.
2.17 The AMA referred to copyright in its submission, stating:
Ownership of the medical file was not contested in Breen
v Williams, nevertheless the High Court did hold that
the records were the property of the doctor. The property in the physical
documents rested with the doctor, as did copyright in the documents
created by the doctor. [22]
2.18 The Committee is aware that the issue of copyright is complex in
relation to an individual's ability to gain access to their medical records.
The Committee does not accept that medical practitioners and other health
providers should make use of the mechanisms afforded by copyright to deny
access to medical records. It may be necessary to exempt medical and other
health records specifically from the Copyright Act to remove any interpretive
ambiguities in relation to a legislative access to medical records scheme.
2.19 The Committee recognises that any extension of privacy legislation
into the private health sector will require detailed consideration to
prevent any inconsistency between the access principles of the Privacy
Act so far as access to personal information is concerned, and the Copyright
Act. [23]
2.20 In pursuing the right of access to medical records for patients
in the private health care sector, Health Complaints Commissioners have
taken the issue of copyright into account but have rejected its application
to medical records. The ACT Commissioner for Health Complaints (ACTCHC),
argued that it was `highly unlikely that the intention of Parliament in
creating legislation to protect copyright in literary works had in mind
the protection of the health records of doctors'. [24]
The issue has not impeded the impetus for reform and the ACTCHC has prepared
a Government Position Paper on forthcoming legislation which will protect
the privacy of personal health records and permit access to personal health
records in both the public and private health sectors in Australian Capital
Territory.
The Australian Constitution
2.21 Although health policy and the provision of health care is now a
major activity of the Commonwealth Government, the Australian Constitution
does not incorporate `health' explicitly into its provisions for legislative
powers. The Commonwealth thus has limited constitutional power over many
health services. The powers of the Parliament to make laws for the Commonwealth
are set out in Section 51 of the Constitution. The power over certain
welfare matters are set out in Part 23A which refers to:
the provision of maternity allowances, widows' pensions, child
endowment, unemployment, pharmaceutical, sickness and hospital benefits,
medical and dental services (but no so as to authorise any form of civil
conscription), benefits to students and family allowances.
2.22 It is beyond the scope of the inquiry's specific reference and this
report to deal in detail with any constitutional problems inherent in
establishing a federal scheme providing patient access to medical records.
The Commonwealth has a limited power to regulate matters that are incidental
to a subject listed in s 51. One constitutional expert has argued
that:
The incidental power has had a very important operation in the
health field. The central activity authorised by the health and social
welfare power (s 51 23A) is the provision to members of the public of
a range of benefits, such as pharmaceutical, hospital and sickness benefits.
A mechanism adopted by the Commonwealth for providing those benefits
to people is the payment of a patient subsidy to doctors, pharmacists,
and nursing homes. Substantial regulation of those professions has been
undertaken, as a matter incidental to providing those benefits. This
incidental regulation has been approved by the High Court on two occasions.
[25]
2.23 There are a number of alternative ways that legislation could be
drafted. The absence of an explicit legislative power has not prevented
experts from commenting upon the means of creating a single scheme for
health or access to medical records, which may draw authority or validity
from many different Commonwealth heads of power. [26]
Senator Neal's amendment which proposed a scheme linked exclusively to
Medicare payments and agreements between health providers and the Health
Insurance Commission, has a number of limitations. However, it demonstrated
one legislative model scheme for patient access to medical records which
might be achieved under Commonwealth powers.
2.24 The Commonwealth could, for example, seek to extend its privacy
legislation to the private health sector by using a range of constitutional
heads of power, including the corporations power, social services power
and the external affairs power. [27]
The Government has said after promising to do so during the election,
that it will not seek to extend Privacy legislation into the private sector
on the grounds of reducing regulatory burdens and compliance costs. [28]
2.25 This unexpected announcement surprised many who had made submissions
to the Committee, especially those who had taken into account the Government's
Discussion Paper `Privacy Protection in the Private Sector', produced
by the Attorney-General's Department and released in September 1996. [29]
From the majority of submissions received, the Committee was aware that
the preferred legislative option was to secure privacy and access to medical
records by means of extending Commonwealth Privacy legislation on a national
basis, for application to individuals and organisations, incorporated
or not, which would automatically cover the private health sector. The
definition of the scope of the intended privacy regime was set out in
the Government's Discussion Paper. [30]
2.26 Other legislative solutions put forward include: (a) a separate
Act along the lines of the United Kingdom legislation (Access to Health
Records Act 1990); (b) extension of existing privacy legislation
along the lines of the New Zealand model (Health Information Privacy Code
1994); (c) extension of existing freedom of information legislation (Freedom
of Information Act 1982); (d) a Commonwealth-State and Territory cooperative
scheme; and, (e) a model based on Commonwealth credit reporting legislation.
2.27 From submissions received, it is evident that people want access
to their medical records made a right not a privilege and demand clear
and comprehensive legislation stating those rights. [31]
Consideration of the issues regarding the appropriate Constitutional head
of power under which a Bill might be pursued should result in a serious
consideration of the means of enacting legislation which makes access
to medical and health records a real right.
State and Territory initiatives
2.28 The anomalous situation which patients in the private health system
have found themselves has given rise to a number of initiatives in the
States and Territories. As noted earlier, Health Care Complaints Commissioners
have been appointed in all States and Territories with the exception of
South Australia and Northern Territory. [32]
Patients, as consumers of health services, have increased expectations
of what the medical profession can achieve, and expect to have the same
rights of access to their medical records whether they receive treatment
in the public or private health sector. Many patients have been surprised
to discover that they do not have any legal right of access to their medical
records in the private health sector.
2.29 Consumer advocacy groups have played a significant role in advancing
changes in attitudes towards patients' rights of access to their medical
records. Many medical practitioners have responded positively to consumer
demand for better communication about individual health records and procedures,
and professional medical organisations have instituted voluntary codes
of practice to encourage medical practitioners to share information with
patients.
2.30 The recognised requirement for informed consent to treatment has
also had a direct bearing on this new era of cooperation. [33]
PIAC's report, Whose Health Records, refers to court decisions over the
past ten years in Australia which have made the medical professions `more
accountable and led to greater recognition of consumer rights'. PIAC cites
the High Court's judgment in 1992 in Rogers v Whitaker for a doctor's
obligation to `provide a consumer with sufficient information to allow
them to give informed consent to treatment'. [34]
Such landmark decisions have in many ways changed the doctor-patient relationship,
although provision of access to medical records in private general and
specialist medical practice has remained legally unresolved.
2.31 The AMA, the peak medical association, and the Royal Australian
College of General Practitioners (RACGP), [35]
have produced guidelines setting out standards and codes of practice for
dealing with patients. The National Health and Medical Research Council
(NHMRC), the prime funding body for Australian health and medical research,
has also produced a Guideline for Medical Practitioners on Providing Information
to Patients in 1993. [36] The RACGP
has recently produced an Interim Code of Practice for Computerised Medical
Records in General Practice, of particular relevance to the issue of privacy
of records when they are being used and shared electronically. The Interim
Code includes a section dealing with patient access to medical records.
This states: `Patients should be permitted to have access to their medical
record upon request. The only exception should be where access is likely
to cause serious harm or distress to the patient'. [37]
2.32 The RACGP informed the Committee that the matter of access to records
was one of communication between doctor and patient and one of education:
The college believes the matter of access to records is really
one of communication between the patient and the doctor and that most
of the problems that arise are from a failure of the process, which
we address within the educational program, that we provide for aspiring
general practitioners. We believe it is appropriate that patients be
given access to the information in their medical record and that it
is essential for their health and wellbeing that they fully understand
the matters contained within the record, which is the
property of the practitioner. The problems that arise
are usually those of a failure of communication. We believe it is the
communication that needs to be addressed. That really is a matter that
the profession is addressing at least in our case through our educational
process. [38]
2.33 Members of the RACGP responded to this issue in a recent survey
conducted by the RACGP. Their survey canvassed a range of issues including
patient access to medical records. 76 per cent of respondents indicated
that they agreed that legislation which presently does not allow patients
to have access to their medical records should not be changed. [39]
2.34 Medical practitioners therefore may state the principle that access
to medical records and privacy of medical records is one simply of communication,
education and cooperation. In practice, fears of possible litigation as
well as strongly-held views on medical records being the sole property
of the medical practitioner, often prevents patients gaining automatic
access to their records.
2.35 Professor Deborah Saltman, Professor of General Practice, confirmed
that many doctors fear `the potential liabilities of disclosing their
records'. In evidence, Professor Saltman stated, from the results of extensive
research conducted in Australia, that there is `a strong desire by all
aspects of the community for access to medical information'. [40]
This view was reiterated by the Australian Federation of AIDS Organisations
(AFAO), not only in relation to access but also to improved health outcomes.
AFAO stated that overseas research indicates that `the more active a role
a person has in determining the course of their health care, the better
health outcomes can be expected'. [41]
2.36 This desire for information is, however, often countered by doctors'
fears of legal action. Professor Saltman supported legislation that would
ensure a right of access of records and clarify the position on ownership
of records. [42]
2.37 The final report of the Professional Indemnity Review (PIR) also
noted that doctors feared litigation. PIR pointed to doctors' fears that
patients might `lose confidence in the health care system and the advice
of health care professionals' if patients were more aware of the `unknowns
and risks' which might be revealed in medical and health records. [43]
2.38 The PIR report observed that such fears were often unfounded and
that lack of access was often the cause of litigation:
In many instances, refusal of access to their medical records
is the motivating factor for a health care consumer to pursue a complaint,
or bring a tort action, against a health care professional. Combined
with the evidence from jurisdictions where there is greater access ...
there has not been an increase in complaints or litigation from providing
... access, the PIR determined that improved access was important, both
for patient information and autonomy and as a way of minimising the
need to resort to legal process to find out what has happened. [44]
2.39 Certain initiatives have already been taken to create a legislative
right of access to medical records in the States. New South Wales has
regulations covering records held in private hospitals, day procedure
centres and nursing homes. Consumers in NSW now have similar rights to
access and to amend their records as those available to consumers in public
health services under FOI. While this particular extension of legislative
rights is welcome, patients of private medical practitioners do not enjoy
these rights.
2.40 New South Wales established a Health Care Complaints Commission
(HCCC) in 1994 to receive, investigate and prosecute complaints arising
out of the delivery of health services in New South Wales. [45]
The HCCC also has a conciliation role. The HCCC was established under
the Health Care Complaints Act 1993 (NSW) as an independent statutory
body reporting directly to the Health Minister and a parliamentary committee
established under the Act. In its first Annual Report, the Commissioner's
Foreword noted that `access to, and ownership of, medical records will
continue to be an issue supported by high profile legal cases and legislative
reform in other States and Territories'. [46]
In 1995-96, the HCCC received 37 complaints about records, representing
4.5 per cent of complaints received against doctors. [47]
2.41 Victoria's Health Services Commission (VHSC) was established in
1988 to `receive, investigate and resolve complaints about the manner
in which health services have been provided, the failure of a provider
to give a health service and the provision of a service unreasonably'.
The Commission's Guiding Principles are set out in the Preamble to the
Victorian Health Services (Conciliation and Review) Act 1987. The VHSC's
submission noted that:
One of the issues consistently complained about to the HSC is failure
to provide access to personal medical records held by a privately treating
doctor or a private hospital. [48]
2.42 The VHSC reported that it currently handled 7000 enquiries about
health matters per year. Of the 7000 enquiries, 2000 become formal complaints
requiring some intervention by HSC officers, and 200 of these, that is,
10 per cent, are about the rights of health service users to have adequate
information about their treatment options and to see their personal records.
[49]
2.43 The ACT Government has begun the process of developing its own privacy
and access to medical records legislation through the office of the ACT's
Commissioner for Health Complaints. The ACT Government has had a long-standing
interest in ensuring that the privacy of the health records of health
consumers is adequately protected and that health care consumers have
access to them. It is proposed that forthcoming legislation will:
ensure that the privacy of the health records of all health care
consumers is adequately protected, and they have equal rights of access
to their health records, whatever the nature of the health service used.
[50]
2.44 The ACT Government is moving towards legislation which will establish
a set of privacy principles which are consistent with the eleven principles
already enacted in section 14 of the Commonwealth's Privacy Act.
The ACT Health Care Complaints Commissioner reiterated the spirit and
intention of the ACT's proposed legislation:
More than anything else we have tried to ensure that whatever
we do is consistent with the Australian Commonwealth Privacy Act because
that is the thing we would like to tie in with most. [51]
2.45 This move was consistent with the Commonwealth Attorney-General's
announcement made in September 1996, that the Commonwealth government
intended to seek the extension of the Privacy Act to the private sector
to the full extent of the Commonwealth's constitutional power.
2.46 Since that time, however, the Commonwealth has announced its intention
that privacy legislation would not extend to the private sector. The Prime
Minister expressed concerns regarding proposals by the States and Territories
to implement a privacy regime for the private sector at the Premiers Conference
held in March 1997. An appeal was made to Premiers and Chief Ministers
`not to introduce legislation on this matter within their own jurisdictions'.
The States and Territories were offered instead the services of the Federal
Privacy Commissioner `to assist business in the development of voluntary
codes of conduct and to meet privacy standards'. [52]
The Commonwealth Minister for Health, Dr Wooldridge, suggested later
in a press interview that Commonwealth action in relation to medical records
would be limited to a `voluntary code'. [53]
2.47 The ACT Government has taken into account the Government's reversal
but will continue with its own legislative program while continuing discussions
on voluntary codes with the Commonwealth. The ACTCHC rationale is set
out in the ACT Government's Position Paper:
Given the uncertain constitutional position of the health sector
so far as the Commonwealth action is concerned, it is considered the
ACT legislation would have been necessary whatever the outcome of the
Commonwealth's own reform process had been ... the effort to coordinate
and assist with national consistency of policy in relation to privacy
issues has helped shape the ACT's proposals. [54]
2.48 The Committee noted that the ACTCHC had examined other models of
legislation related to access to medical records, in particular the UK
and New Zealand legislation, to produce a workable and comprehensive model
for the ACT. National consistency was a primary aim of the ACT's legislation:
We have looked at both pieces of legislation and, while we have
not used exactly the same format as the New Zealand one because it is,
again, a legislative code from a big piece of privacy legislation with
a code underneath just for the health care area, what we have done is
try to design a piece of legislation which is actually about patient
access to health records, but with underlying privacy principles so
that we could have national consistency if we were to go down that route.
[55]
2.49 The Committee was presented with evidence on voluntary codes in
relation to access to medical records and the issue is discussed in greater
detail in Chapter 5. Here it is sufficient to note that the AMA has
now opted for a voluntary code and a cooperative approach to access rights
to medical records. In its submission, however, the AMA noted that in
1995 its Federal Council considered and discussed patient access to medical
records and endorsed the provision of legislation. A formal AMA resolution
read as follows:
Federal Council endorses AMA participation in discussion with
the Federal Government on the development of legislation that would
allow Australians non-retrospective access to medical records maintained
by doctors in private practice. [56]
2.50 The day-to-day experience of Health Care Complaints Commissioners,
supported by statistics suggests, however, that voluntary codes are not
a fail safe mechanism and provide no guarantees of access. The ACT Commissioner
for Health Complaints made the following observation:
I might make a quick comment in relation to voluntary codes which
have been mentioned, because to an extent voluntary codes already exist.
The Australian Medical Association has a clear policy in relation to
the provision of information in medical records to patients, for example,
and I cannot help but notice from my experience that this has not really
affected the practice of members of the medical profession. [57]
International legislative measures
2.51 Evidence provided to the Committee indicated that legislative measures
overseas had provided models for the proposed Australian Capital Territory
legislation on access to medical records. Ms Fiona Tito, consultant to
the ACT Health Complaints Commissioner, indicated that both the United
Kingdom's Access to Health Records Act 1990, and the New Zealand Health
Information Privacy Code 1994 had been carefully considered in relation
to proposed legislation (see Paragraph 2.43 above).
2.52 Canada has relied upon the common law right of access after the
Canadian Supreme Court decided in 1992 that a patient is entitled to reasonable
access to see and copy their doctor's records. [58]
Significantly, the High Court of Australia rejected the fiduciary argument
put forward in the Canadian case of McInerney and McDonald in its interpretation
of Australian common law in the case of Breen v Williams.
2.53 Many state governments in the United States of America had introduced
separate legislation governing consumers' access to `part of their medical
record' in the 1980s. According to PIAC's report, `by 1995, 50 States
had a law on the subject, some covering only hospital records or doctors'
records and some specifically excluding mental health records'. The US Senate
passed the Medical Records Confidentiality Act in 1995 which provides
consumers with a national right of access and a right to seek amendment
to their medical records. [59]
2.54 The UK legislation, the Access to Health Records Act 1990, came
into effect in November 1991 as a result of a decision of the European
Court of Human Rights which held that refusal to allow access by the applicant
to certain health records was in breach of Article 8 of the European Convention
for the Protection of Human Rights and Fundamental Freedoms 1950. The
UK legislation defines a health record as one which:
(a) consists of information relating to the physical or mental
health of an individual who can be identified from that information,
or from that and other information in possession of the holder of the
record; and
(b) has been made by or on behalf of a health profession in connection
with the care of that individual. [60]
2.55 The UK legislation extends to health records made or held in both
public and private sectors and covers registered medical practitioners,
registered dentists, registered opticians, registered pharmaceutical chemists,
registered nurses, midwives and health visitors, registered chiropodists,
dietitians, occupational therapists, orthoptists and physiotherapists,
clinical psychologists, child psychotherapists and speech therapists,
art and music therapists employed by a health service body, and a scientist
employed by a health service body as a head of department. [61]
Reviews of decisions to refuse access to a health record is by application
to a court. [62]
2.56 New Zealand's Privacy Act 1993 provides for codes of practice to
be issued by the Privacy Commission to regulate information practices
of particular agencies and sectors. The Health Information Privacy Code
1994, applies specifically in the health sector to ensure the protection
of individual privacy.
2.57 The Health Information Privacy Code has twelve Rules. Rule 1:
Purpose of collection of information; Rule 2: source of health information;
Rule 3: collection of health information from individual; Rule 4:
manner of collection of health information; Rule 5: storage and security
of health information; Rule 6 access to personal health information;
Rule 7: correction of health information; Rule 8: Accuracy etc.,
of health information to be checked before use; Rule 9: retention
of health information; Rule 10: limits on use of health information;
Rule 11: limits on disclosure of health information; Rule 12:
unique identifiers.
2.58 Rule 6 of the Code provides individuals, or their representatives,
to a right of access to personal health information, providing that information
is held in a way that is readily retrievable. The individual concerned
is entitled:
(a) to obtain from the agency confirmation of whether or not
the agency holds such health information; and
(b) to have access to that health information. [63]
2.59 Prior to the Government's announcement not to extend privacy legislation
into the private sector, the Commonwealth Attorney-General had proposed
that legislation similar to the New Zealand model would be enacted to
protect records containing personal information held within the private
sector. The Attorney-General's Discussion Paper referred to the application
of the statutory Information Privacy Principles (IPPs). [64]
Commonwealth/State cooperative agreements
2.60 One of the perceived stalling points preventing national access
legislation which would ensure equal access to medical records in the
public and private health sectors, has been the Commonwealth's apparent
lack of constitutional power to legislate directly over health matters.
Senator Neal's amendment attempted to utilise the Medicare system as a
positive means of ensuring access to medical records by extending Medicare
provider agreements. Under the proposed scheme, providers would have been
required, `to allow access to medical records that the provider holds
about an individual if an application is made in writing for that access'.
[65]
2.61 The Commonwealth has achieved national uniformity in legislation
in a number of key areas. Corporations law, Trade Practices law (specifically
restrictive trade practices in connection with National Competition policy),
and Occupational Health and Safety law provide working examples of Commonwealth/State
cooperation resulting from either application laws as above, or referral
powers passed from the States to the Commonwealth under s. 51 ( 37)
of the Australian Constitution.
2.62 An example of a Commonwealth/State cooperative arrangement operating
under the Corporations Law is the Australian Securities Commission (ASC)
which is an independent body providing a central registry and Regional
Commissioners. The ASC, among its listed commissions, administers national
scheme laws `effectively but with a minimum of procedural requirements',
and ensures that `documents, and information is available as soon as possible
for access by the public'. [66] This
working arrangement provides a feasible model which could be adapted for
an access scheme in Australia.
2.63 The States and Territories acting in concert and with the encouragement
of the Commonwealth have enacted uniform consumer credit laws, including
a Consumer Credit Code. Queensland enacted template legislation which
was then applied by the other States and Territories. [67]
2.64 Section 51 (37) of the Australian Constitution covers:
Matters referred to the Parliament of the Commonwealth by the
Parliament or Parliaments of any State or States, but so that the law
shall extend only to States by whose parliaments the matter is referred,
or which afterwards adopt the law.
2.65 Dr John McMillan, author of Commonwealth Constitutional Power over
Health, states in his study that `periodic attempts or proposals are made
in Australia to create joint Commonwealth/State cooperative schemes. That
device has been used variously for formulating policies, for administering
programs, and for devising model codes'. [68]
Referral of State powers makes it possible to extend the scope of Commonwealth
power by intergovernmental agreements as opposed to constitutional amendment.
[69] Furthermore, in relation to the
federal provision of health policy and services, the Commonwealth has
a responsibility to ensure that there is equality in service provision.
[70] This equality of service should
extend to guarantee an individual's right of access to their own medical
and health records in the public and private health sectors.
2.66 As noted earlier, constitutional questions should not be used to
dismiss or delay the enactment of legislation which guarantees the right
of access. Australians should have a right of access which patients and
health consumers in other countries, namely the United Kingdom, New Zealand,
Canada and the United States of America, can freely exercise without resorting
to litigation.
2.67 Without entering into a constitutional debate about `civil conscription',
it is possible to design a legislative scheme which will enable the Commonwealth
to coordinate State and Territory privacy legislation and consolidate
a register of medical and health records system based upon current and
past professional registrations in the States and Territories. Such a
system would also record storage, transfer of records in, for example,
the sale of a medical practice, storage of records retained after the
decease of a medical practitioner, and the destruction of record all practical
problems associated with records which are discussed further in following
chapters.
2.68 What is required is sufficient political will to bring about Commonwealth
legislation to provide equal rights for all health consumers to ensure
individuals' access to their medical and other health records.
Recommendation 1: The Committee notes the limited constitutional
heads of power for the Commonwealth to legislate in this area. Accordingly,
the Committee recommends that this legal problem needs to be addressed
without delay. Such consideration would identify the most appropriate
means of enacting national legislation to make access to medical and other
health records a real right.
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FOOTNOTES
[1] High Court of Australia [1995-1996 186 CLR
71].
[2] Freedom of Information Act 1982 (Clth)
ss 11, 41; Freedom of Information Act 1989 (NSW) ss 16, 31; Freedom
of Information Act 1982 (VIC) ss 13, 33.
[3] Open government: a review of the federal
Freedom of Information Act 1982, Australian Law Reform Commission,
Report No. 77, p.29.
[4] Private Hospitals Regulation 1996
(NSW), Day Procedures Regulation 1996 (NSW), Nursing Homes Registration
1996 (NSW). The 1996 regulations supersede 1990 regulations of the
same title.
[5] Submission No.54, p.9 (DHFS).
[6] FOI Act 1989 (NSW) s31(4); FOI
Act (VIC), s16.
[7] For example, confidential communications
are protected under Freedom of Information Act 1982 (Clth) s41,
and Freedom of Information Act 1989 (NSW) s31 (2) and schedule
1, clause 6; Freedom of Information Act 1982 (VIC) s31.
[8] South Australia has no Health Complaints
Commission but the State Ombudsman's Office receives and investigates
health-related complaints. The Northern Territory Government has recently
approved the establishment of an independent Health Complaints Commissioner
to cover the public and private health sectors. The NT Health Complaints
Commission will operate under its own legislation and it is anticipated
will be in operation from 1 January 1998.
[9] Whose Health Records: Attitudes to consumer
access to their health records and the need for law reform, Amanda
Cornwall, Public Interest Advocacy Centre (PIAC), October 1996, p.13.
[10] Submission No.34, p.23 (AMA) (emphasis
in original).
[11] Point 3, Explanatory Guidelines, Australian
Medical Association Guidelines on Patients' Access to Records Concerning
Their Medical Treatment, 1993.
[12] Submission No.14, p.2 (RACGP).
[13] Transcript of Evidence, p.20 (ALRC).
[14] Review of the adversarial system of
litigation: An introduction to the inquiry, ALRC, 12 September
1996.
[15] Transcript of Evidence, p.20 (ALRC).
[16] Submission No.27, p.1 (MHLC).
[17] Exemptions to access are discussed in
more detail in Chapter 6.
[18] Submission No.27, p.1 (MHLC).
[19] ibid.
[20] ibid.
[21] Whose Health Records: Attitudes to
consumer access to their health records and the need for law reform,
Amanda Cornwall, Public Interest Advocacy Centre (PIAC), October 1996,
p.15.
[22] Submission No.34, p.9 (AMA).
[23] Submission No.33, p.20 (ACTCHC).
[24] Submission No.33, p.19 (ACTCHC).
[25] John McMillan, Commonwealth Constitutional
Power over Health, Consumers' Health Forum Inc (CHF), c.1992, pp.
23-4. The `two occasions' referred to `pharmaceutical benefits', see British
Medical Association v Commonwealth (1949) 79 CLR 201, 204, 274-5,
and `hospital and nursing home benefits', see Part V of the National
Health Act 1953 (Clth), ibid.
[26] ibid, pp.18-19.
[27] Submission No.33, p.7 (ACTCHC). Refers
to Australian Constitution, Section 51 (20), (23A), (29).
[28] Press release, `Privacy Legislation',
Prime Minister, 21 March 1997.
[29] Discussion Paper: Privacy Protection
in the Private Sector, Attorney-General's Department, September 1996.
[30] ibid, p.5.
[31] Submission No.27, p.1 (MHLC).
[32] See Footnote 8.
[33] See, for example, Gummow J on `informed
consent' re: Rogers v Whitaker [1992 175 CLR 479], cited in High Court
of Australia, Breen v Williams [1995-1996 186 CLR 71], at 124-5.
[34] Whose Health Records: Attitudes to
consumer access to their health records and the need for law reform,
Amanda Cornwall, Public Interest Advocacy Centre (PIAC), October 1996,
p.12.
[35] See, Paragraphs 2.7 and 2.8 above.
[36] The Guideline for Medical Practitioners
on Providing Information to Patients, Commonwealth of Australia, 1993,
was produced to assist doctors in obtaining informed consent to treatment
from consumers, p.7.
[37] The Royal Australian College of General
Practitioners: Interim Code for Computerised Medical Records in General
Practice, February 1993, Point 5, p.6. (Additional information).
[38] Transcript of Evidence, p.63 (RACGP)
(emphasis added).
[39] RACGP Membership Survey, October-December
1996, p.7. `This survey was sent out a numerically equal sample from each
State and the ACT. Members were proportionally sampled in each membership
category according to the overall status in that State. Total sample response
was 1120, invalid 12, valid sample 1108, valid replies 886, percentage
80%. The high response rate indicates that these results are representative
of the whole sample', ibid., p.1, (Aditional Information).
[40] Transcript of Evidence, pp.167-8.
Professor Saltman referred to a survey conducted by the General Practice
Professorial Unit (University of Sydney) on a random sample of 400 older
people in an older population in Sydney. 395 respondents indicated that
they wanted access to Medicare information `hospital use, pharmaceutical
use and doctor visits', ibid, p.167.
[41] Transcript of Evidence, p.102 (AFAO).
Mr Chris Ward, Legal Policy Analyst cited information from the US journal,
AIDS Patient Care, December 1992. Also referred to were findings
from a study by Katoff, Rabkin and Remein, `A psychological study of long-term
survivors of AIDS', ibid., pp.273-74.
[42] Transcript of Evidence, p.170 (Professor
Deborah Saltman).
[43] Review of Professional Indemnity Arrangements
for Health Care Professionals: Compensation and Professional Indemnity
in Health Care, A Final Report, November 1995, Commonwealth Department
of Health and Family Services, p.24.
[44] ibid, p.77.
[45] Health Care Complaints Commission, Annual
Report 1994-95, p.9.
[46] ibid, p.7.
[47] ibid, p.8.
[48] Submission No.53, p.3 (VHSC).
[49] ibid, pp.2-3.
[50] Health Records - Privacy and Access,
An ACT Government Position Paper, Draft, 6 April 1997, Preface, p.iii.
[51] Transcript of Evidence, p.191 (ACTCHC).
[52] Press release, `Privacy Legislation',
Prime Minister, 21 March 1997.
[53] Jodie Brough, `Patients to see their private
medical files', Sydney Morning Herald, 19 March 1997, p.7.
[54] Health Records: Privacy and Access,
ACT Government Position Paper, May 1997, p.18.
[55] Transcript of Evidence, p.195 (ACTCHC).
[56] Submission No.34, p.5 (AMA).
[57] Transcript of Evidence, p.191 (ACTCHC).
[58] McInerney and McDonald (1992) 93
DLR (4th) at 415.
[59] Whose Health Records: Attitudes to
consumer access to their health records and the need for law reform,
Amanda Cornwall, Public Interest Advocacy Centre (PIAC), October 1996,
p.11.
[60] Section 1, Access to Health Records
Act 1990 (UK).
[61] ibid, section 2.
[62] ibid, section 8.
[63] Health Information Privacy Code 1994
(NZ), Rule 6 (1) (a) (b), p.18.
[64] Discussion Paper: Privacy Protection
in the Private Sector, Attorney-General's Department, September 1996,
pp.6-12.
[65] Senator Neal's amendment to the Health
Insurance Amendment Bill (No 2) 1996, 19AD (4) Content of Agreement.
[66] From the Australian Securities Commission
Act 1989 - s1(2), Australian Securities Commission Annual Report,
1995-96, p.4.
[67] The Uniform Consumer Credit Laws Agreement
1993 of the States and Territories.
[68] John McMillan, Commonwealth Constitutional
Power over Health, Consumers' Health Forum Inc (CHF), c. 1992, p.83.
[69] ibid, p.85.
[70] ibid, p.82.