REPORT ON ACCESS TO MEDICAL RECORDS
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CHAPTER 5 - LEGISLATIVE OPTIONS FOR THE CREATION OF AN ACCESS SCHEME
Cooperative Commonwealth/State agreement
5.4 A cooperative Commonwealth and State scheme is an alternative legislative
option for ensuring patients' right of access to medical records on a
national basis. The advantages of a cooperative scheme would be the provision
of a uniform set of laws throughout Australia for all Australian health
consumers. Once a cooperative agreement was struck, the Commonwealth would
establish an independent body such as a Commission for Health Records
whose role would be to oversee the operation of the laws in each State
and Territory.
5.5 This independent body might also act as a central registry of health
records and as an independent review tribunal. The advantage of uniformity
in State and Territory laws would be that health consumers would have
certainty about their rights of access and privacy. Such a body might
have a charter which would set out the provisions of access and any exemptions
clearly. The charter would also set out provisions for any appeals and
review process. Health consumers' and providers' rights and obligations
would be identified and uncertainties and disparities would be removed.
5.6 Grants to finance the administration and operational costs of State
(and regional) offices of the independent body (for example, the Commission
for Health Records) would be made under s. 96 of the Constitution.
Health consumers and providers would have access to this independent body
in offices established around the nation. If such a Commission were established,
Health Care Complaints Commissioners in the States and Territories might
have a distinct role, acting as the appropriate conduit to the Commonwealth's
Commission.
5.7 One difficulty facing the establishment of a cooperative scheme might
be the time such a scheme could take to coordinate and implement. However,
once a workable legislative model was adopted in one State, others would
be encouraged to introduce the same model legislation speedily. Another
difficulty might be the time taken to agree upon subsequent amendments
to the scheme which would require unanimous agreement and enactment. The
need for amendments must be borne in mind, particularly with regard to
the changing nature of IT and electronic record keeping.
5.8 Commonwealth and State cooperative schemes are already in operation
in Australia. Notably, in the areas of credit reporting as referred to
earlier, housing assistance and, more recently, with the introduction
of uniform firearm laws, cooperative agreements have enabled nationally-consistent
operations to function. [3]
5.9 The Australian Securities Commission, discussed in some detail earlier,
has been created by the Commonwealth as a Commonwealth agency and its
nationwide functions are conferred upon it by both the Commonwealth and
the States. The Corporations Law replaced the cooperative scheme companies
and securities code that had been in operation since 1982. Like that scheme,
the national operation of the Corporations Law is achieved by the existence
of uniform legislation in each State. This is achieved by the simple expedient
of each State and Territory having a law that says that the Corporations
Law (contained in s. 82 of the Corporations Act 1989 (Clth)) is the
law of that State. [4]
5.10 In developing a cooperative scheme for access to medical and health
records across the private health sector, extensive consultation and consideration
would be required. However, working formulas and guiding principles have
already been achieved in the State and Territory Health Care Complaints
Commissions. Much of the groundwork on access to medical records has already
been achieved in the public health sector taking into account existing
privacy legislation and access requirements.
5.11 Health Care Complaints Commissioners operating under separate State
legislation have already taken on a conciliation role in relation to the
private health sector. Should a decision be made to institute a Commonwealth/State
cooperative scheme, remedies and mechanisms already developed by Commissioners
are in place. Utilising this accumulated expertise and effective processes
already developed would enable efficient and timely consultation between
State and Territory governments and the Commonwealth. The reference of
appropriate powers by State and Territory jurisdictions to the Commonwealth
would ensure a nationally-consistent access to medical records regime.
Proposed ACT legislation
5.12 The ACT Government has already moved positively towards preparing
a legislative regime which will enable all health care consumers to access
their health records in the public and private health care sector, whatever
the nature of the health services used. The proposed legislation will
ensure that the privacy of the health records of all health consumers
is adequately protected. As noted earlier, the ACT Government has indicated
its desire to establish a set of privacy principles consistent with the
eleven principles enacted in section 14 of the Commonwealth's Privacy
Act. The ACT Government has argued that even if the Commonwealth's Privacy
Act was extended, it is likely that the Commonwealth's constitutional
powers would be inadequate to cover all health services in the ACT and
other states and territories, without separate ACT and state and territory
government action as well. [5]
5.13 Furthermore, the ACT Government has suggested that:
Given the broad scope of the current Commonwealth Privacy Act,
it is also arguable that specific issues for health records will still
need to be addressed in the development of any voluntary code. [6]
Extension of Freedom of Information (FOI) legislation
5.18 In relation to access to medical records, the Committee did not
extensively canvas the possibility of extending Freedom of Information
(FOI) legislation into the private health sector at its hearings, in relation
to an access to medical records scheme. The Freedom of Information Act
1982 (Clth), like the Privacy Act 1988 (Clth), only applies to the public
and Commonwealth government sector. Currently, the FOI Act applies only
to documents in the possession of government or Commonwealth agencies
and contract case managers under the Employment Services Act 1994 (Clth).
This includes documents originating in the private sector which are in
the possession of a government department or body. [11]
5.19 In the ALRC report, Open Government: a review of the federal Freedom
of Information Act 1982, [12] significant
linkages were identified between the FOI Act and the Privacy Act. The
connections relate to invasions of privacy (that is, unreasonable disclosure
of personal information about any person (including a deceased person),
[13] and access to, and amendment of,
one's own personal information. [14]
In the ALRC and Administrative Review Council Discussion Paper Freedom
of Information, while rejecting the concept of extending the FOI legislation
to the private sector, it considers the power of the FOI Act to provide
access to and corrections of a person's own personal information and the
person's ability to protect privacy through these processes. [15]
5.20 The Commonwealth has not envisaged extending FOI provisions into
the private sector and, indeed, there would be the same, or similar, constitutional
and commercial obstacles to overcome as discussed earlier regarding the
extension of privacy legislation into the private sector. Extension of
legislation is not impossible, however, and many see such a move as desirable
in view of recent policy decisions.
5.21 The Senate's Finance and Public Administration References Committee
is, for example, currently conducting an inquiry into the contracting
out (outsourcing) of government services. As part of that inquiry, the
Committee is considering whether the jurisdiction of the Ombudsman Act
should be extended to ensure that it covers all contracted out government
services, and whether government, to meet its responsibilities for policy
making, should have access to all files, information etc, generated by
private sector contractors in meeting their contractual obligations. The
operation and extension of FOI into the private sector as a result of
outsourcing which is being considered by the Finance and Public Administration
Committee, could have implications for medical and other health records
in the private sector.
Adoption of United Kingdom or New Zealand-style legislation
5.22 The Australian Law Reform Commission (ALRC) made its position clear
on the matter of access to medical and health records during the Committee's
public hearing. The ALRC stated its view that:
[t]he best way to in which 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. [16]
5.23 As noted in Chapter 4, other countries have already extended
privacy legislation into the health care area. In its evidence, ALRC stated
that in the international context, Australia will be under greater pressure
on the issue of privacy through its commitments made under the International
Covenant on Civil and Political Rights, and OECD's guidelines. [17]
The European Union's privacy Directive on data protection which comes
into force on 1 July 1998 will have a direct bearing upon Australia's
ability to trade and exchange data. [18]
5.24 Australia can benefit from the experience of the legislative approaches
adopted by other countries for access to medical and health records. The
access regimes referred to in this report, notably the United Kingdom
legislation and the New Zealand Health Information Privacy Code, both
contain elements which may be pertinent to the Australian situation. The
Committee is, however, mindful of the ALRC's proviso:
Overseas ideas need to be drawn upon selectively. When transplanted
to Australia, and applied in the context of Australian attitudes, conditions
and practices, they may have unexpected and unfortunate effects. Legal
systems tend to be strongly influenced by the cultural and economic
conditions of the country in which they have been developed, and all
of those conditions need to be closely examined when assessing the likely
effect of particular overseas procedures and processes if applied in
Australia. [19]
5.25 It is important to note that since the late 1940s the United Kingdom
has had a national health system, and in that sense, there has been a
system of direct accountability to a centralised health system. In the
UK, medical records are `owned' by the British national health system.
There has been private medical practice, but the bulk of the population
have been under the care of general medical practitioners and specialist
practitioners working within the National Health system. Times have changed,
however, and many health care consumers pay health insurance and opt for
private medical services. The UK legislation, however, covers all personal
information records held by all registered health practitioners and professionals.
5.26 The UK legislation came into effect in 1991, a result of a decision
by the European Court of Human Rights which held that the refusal to allow
access by the application to certain health records was in breach of the
European Convention for the Protection of Human Rights and Fundamental
Freedoms (1950).
5.27 New Zealand has a national health system made up of public, private
and voluntary sectors which interact to provide and fund health care.
Over seventy-five per cent of health care is publicly funded. [20]
5.28 In 1992, the NZ Privacy Commissioner, commenced discussions on a
code of practice for the health sector with the Department of Health,
followed by wide discussions and consultations. The statute law exists
in New Zealand in the form of the Privacy Act which came into force on
1 July 1993. The Health Information Privacy Code is made under the authority
of the Privacy Act under powers delegated to the Privacy Commissioner.
It applies to public and private health agencies. [21]
5.29 The ACT Health Complaints Commissioner advised the Committee that
the United Kingdom and New Zealand legislation had been examined as part
of the process of preparing recommendations for ACT legislation on access
to medical records. Ms Fiona Tito, for the ACT Health Complaints Commissioner
made the following points in relation to the ACT's proposed legislation,
and the UK and NZ legislation:
The difference between the two is that the English legislation
is specifically about patient access to their records. It is not part
of a broader privacy piece of legislation. I believe that there are
omissions ... in that piece of 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.
It is [an] amalgam of the two. [22]
5.30 The ACT Health Complaints Commissioner, confirmed the ACT's approach
to the 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 that we would like to tie in with most. [23]
The `Senator Neal' option
5.33 It was amendments proposed by Senator Neal which led to the issue
of access to medical records being referred to the Committee. The scheme
proposed by Senator Neal involved a contractual arrangement between medical
providers and the Health Insurance Commission under which providers would
guarantee patients access to their medical records. Essentially, failure
to provide access would involve the forfeiture of payment of Medicare
benefits.
5.34 Although the scheme as proposed was minimalist in its scope, the
intention was to bring about a national access regime. Linking an access
scheme to Medicare benefits limited the scope and range of the legislation.
The format of the proposal was determined by the procedural limitations
of the Senate and the limits of the Constitution, rather than a view that
it was the most desirable avenue. The scheme as outlined in the amendment
aimed to utilise an existing mechanism and operate on a `national' basis.
The limitations, however, were recognised and it is accepted that the
scheme as proposed, acted as a positive catalyst in focusing debate on
the issue of access to medical records through reference of the issue
to the Committee.
5.35 During the Committee's public hearings, comments upon the proposed
amendments were received, and the major areas of concern are set out briefly
below.
Limitations of a scheme linked primarily to Medicare payments
5.36 The proposed scheme had a number of shortcomings which were acknowledged.
It failed to take into account those medical practitioners who legitimately
provide services which fall outside the Medicare rebate system, services
which, for example, include elective procedures; it also failed to take
into account the potential difficulties in persuading medical practitioners
to sign new agreements with access conditions attached, with the Health
Insurance Commission. Furthermore, the scheme did not set out conditions
relating to the collection, storage, security and disposal of medical
records, or regulate the use of disclosure of medical records. The amendments
did, however, refer to exemptions, sanctions and other privacy issues.
5.37 The ALRC, while agreeing that the proposed amendments were `a valiant
effort to address the problem', observed that the scheme as proposed was
constrained because it was tied to the Medicare health insurance scheme
and thus covered only those eligible under Medicare rebate arrangements.
The ALRC indicated that the scheme as proposed did not provide uniform
coverage for all patients and health consumers and did not cover the whole
range of medical procedures. Further, the ALRC considered that the exemptions
as proposed were `too unstructured' and granted `too broad a discretion'
to health care providers with respect to denying access to individuals.
[24]
5.38 The Federal Privacy Commissioner expressed similar concerns, particularly
related to the narrow application of the scheme administered through agreements
with medical practitioners and the Medicare benefits program. As noted,
is would be unlikely that all health providers would come within the scope
of such a scheme. Further, the Federal Privacy Commissioner expressed
concern that the scheme did not refer specifically to the modern concepts
of information privacy practice which should cover all aspects of the
handling of personal information. It was suggested that the `Senator Neal'
option might work as an `interim partial solution' if there were significant
delays in introducing a comprehensive and coherent extension of privacy
legislation into the private sector, including the private health sector.
[25]
5.39 The Health Insurance Commission (HIC) referred to administrative,
resource and policy considerations in its submission. The HIC referred
in particular to the role the HIC would be required to play under the
`Neal' proposal in determining whether a doctor had refused access to
medical records. The HIC was also concerned about the punitive effect
upon patients for a medical practitioner's failure to enter into an access
agreement with the HIC. The allocation of resources for appeals and review
processes also presented a major problem.
5.40 The HIC noted that the proposal had the potential `to have a huge
administrative impact on the operations on the HIC' `Substantial resourcing
would be required to enable the HIC to put such administrative processes
into effect'. [26] Overall, the HIC
felt that under the scheme as proposed, the Commission would be placed
in an invidious position, operating in conflicting roles as administrator,
contractor, assessor, arbitrator and, in certain instances, a disciplinary
body.
5.41 The Department of Health and Family Services (DHFS) made its submission
in the knowledge of the Commonwealth's announced preference for a voluntary
code of practice. For the Committee's benefit, DHFS provided a list of
the disadvantages of the scheme as proposed, noting its reservations.
These were in line with those expressed above incorporating the issues
of contractual arrangements, compliance and enforcement, and the question
of sanctions. [27]
5.42 While the Committee noted critical comments on points of administration,
it also noted there was consensus on the need for a national access to
medical records regime.
Other options for an access to medical records scheme
5.43 In addition to the various options for schemes which are outlined
above, two other options were proposed to the Committee.
5.44 The first option was to place the onus of record keeping (as opposed
to recording), on the State. In her evidence to the Committee, Professor
Deborah Saltman suggested that one option for patient access was to keep
the patient record in the ownership of the State. Reference was made to
NHS pharmaceutical prescription records:
That brings me back to the question of who should own the record.
I think the state should own the record. ... I think the state should
own the record and give a licence to doctors. If you look at the UK
example, that is exactly what happens there. If you look at our current
example in relation to prescription pads, that is what happens there,
too. We have a model in Australia that works in terms of writing prescriptions.
[28]
5.45 The second option was patient-held records. Patient-held were suggested
as a way of ensuring access to medical records. Health Issues Centre (HIC)
(Vic) reported that in Australia, some precedents for patient-held or
consumer-held records exist. Parents are often the custodians of their
children's vaccination and immunisation records and keep their children's
records from baby health centres. According to HIC (Vic) a review of birthing
services in Victoria recognised the advantages of the consumer-held record
in improving continuity of care. The final report of that review, Having
a Baby in Victoria, recommended that such a system be introduced for expectant
mothers `to ensure that the health information was integrated and accessible
as the women moved through the health system during pregnancy'. [29]
5.46 While there is a trend towards patient-held records in certain areas
of patient care, eg, infant health care, ante-natal care, and in community
nursing care, the Committee noted that the issue remained unresolved in
Australia. [30] The option for patient-held
records places responsibilities on patients who receive treatment and
care in highly specific health care arenas. In the case of electronically-held
records, it would not be possible for patients to maintain such records.
5.47 The issue of so-called computer `smart' health cards was not examined
in depth by the Committee, but it was raised briefly by the Chairman,
NSW Privacy Committee. [31] A Smart
Card could, in future, be another type of patient-held record. Smart Cards,
like credit cards, act as a storage medium for personal health information
and might contain personal health information which could be carried by
an individual. A Smart Card could carry information on, for example, allergies,
drug intolerance, blood group, hospitalisations, pharmaceutical needs.
No trials have been conducted in Australia. [32]
5.48 The Royal College of Nursing Australia (RCNA) also submitted that
there are moves towards `patient-held' records throughout Australia. They
noted that in many circumstances of community nursing, patient notes are
held by patients in their homes with entries made by health professionals
when they visit the patient. [33]
5.49 The Professional Indemnity Review (PIR) made a formal recommendation
on the issue of patient-held records in its final report, Compensation
and Professional Indemnity in Health Care (1995). PIR recommended that
the Commonwealth Department of Human Services and Health (now Health and
Family Services), examine the option of a patient-held record as a matter
of urgency. PIR argued:
The needs of both health care professionals and patients could
be satisfied, for example, by the provision of a copy of the notes taken
at the time of their consultation and copies of all test results. Patient-held
records can overcome problems where continuity of care is not possible.
Patients often consult many doctors and other health professionals.
... Patients may wish to seek a second or further opinion. ... Patients
may be admitted to hospitals or not be able to contact their normal
health care professional. The health care professional may have disposed
of the practice, including health care records, or he or she may have
retired or died. Patients often change home and work locations. [34]
5.50 Patient-held records, while possibly desirable and effective in
particular areas of health care such as ante-natal, infant health or home
nursing, are not a feasible alternative. Furthermore, there appears to
be no national consistency across States and Territories, nor professional
guidelines or standards applied to the ways in which patients may hold
their own records. Such limited access as does exist does not alter the
fact that, on a national basis, patients in the private health sector
do not have a legitimate right of access to their records.
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FOOTNOTES
[1] The `Bennett' Bill was passed into legislation
by the US Senate as the Medical Records Confidentiality Act of 1995.
The Bill was presented to the federal legislature in the United States
as previous attempts to introduce laws to ensure confidentiality and access
have `died on the vine', or have only been adopted in a minority of States.
For a full explanation of the Medical Records Confidentiality Act of
1995 and the arguments which have ensued, see Judith Mair, `Access
and confidentiality of medical records: a legislative response in the
United States', Health Information Management, Vol. 26, No. 1,
1996, pp. 33-40.
[2] Submission No.25A, p.11 (Federal Privacy
Commissioner).
[3] Housing Assistance Act 1989; National
Firearms Program Implementation Act 1996.
[4] `Origins of the Law', Australian Corporations
& Securities Legislation, 8th edition, CCH Australia Ltd, NSW,
1997, p.1.
[5] Health Records: Privacy and Access an
ACT Government Position Paper, May 1997, p.18.
[6] ibid, p.22.
[7] ibid, p.24.
[8] ibid, pp.12, 22.
[9] ibid, p.24.
[10] `Privacy protection in Australia', background
information from the Federal Privacy Commissioner, April 1997, p.1.
[11] Review of Professional Indemnity Arrangements
for Health Care Professionals: Compensation and Professional Indemnity
in Health Care, A Final Report, November 1995, AGPS, 1996, (4.85), p.82.
[12] Australian Law Reform Commission, Report
No. 40, Open government: a review of the federal Freedom of Information
Act 1982, 1995, p.54.
[13] ibid, p.125.
[14] ibid, p.54.
[15] ALRC, Discussion Paper 59, Freedom
of Information, May 1995, Note 74, p.23.
[16] Transcript of Evidence, p.22 (ALRC).
[17] ibid, p.23.
[18] In October 1995, the European Union passed
a Directive on data protection. Under the terms of the Directive, transborder
flows of personal data to non-European Community nations without an adequate
level of protection would, in some cases, be prohibited.
[19] ALRC, Additional Information, 10 April
1997, p.7.
[20] New Zealand Official Year Book,
`Organisation of health services', p.151.
[21] `Privacy Issues in Medicine', Notes for
an address by the Privacy Commissioner to the Third Annual Medico-Legal
Conference, Wellington, 30 March 1995, p. 103.
[22] Transcript of Evidence, p.195 (ACTCHC).
[23] ibid.
[24] Transcript of Evidence, pp.20-21
(ALRC).
[25] Submission No.25, p.4 (Federal Privacy
Commissioner, HREOC).
[26] Submission No.30, p.3 (HIC).
[27] Submission No.54, p.11 (DHFS).
[28] Transcript of Evidence, pp.168-9
(Professor Deborah Saltman).
[29] The Power of Information: Health Providers,
Consumers and Treatment Records, Health Issues Centre, May 1993, p.23.
[30] In the medical literature, an argument
for patient-held records is upheld in Mary L. Gilhooly & Sarah M.
McGhee, `Medical Records: practicalities and principles of patient possession',
Journal of Medical Ethics, 1991, 17, pp. 138-143. For a positive
response, see Raanan Gillon, `Should patients be allowed to look after
their own medical records?', loc. cit, pp. 115-116.
[31] Transcript of Evidence, p.52 (NSW
Privacy Committee).
[32] `Although there have been many trials
conducted around the world, few have shown the hoped for success. The
major disadvantage is that compared to computerised systems, it is more
difficult to restrict access to different types of information on the
card, much of which may be highly sensitive'. Josephine Raw, `What is
an Electronic Health Record?', Health Issues, 49, December 1996,
p. 17.
[33] Submission No.24, p.1 (RCNA).
[34] Review of Professional Indemnity Arrangements
for Health Care Professionals: Compensation and Professional Indemnity
in Health Care, Final Report, November 1995, AGPS, pp. 83-84.