REPORT ON ACCESS TO MEDICAL RECORDS
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CHAPTER 6 - EXEMPTIONS AND APPEALS PROCESSES
6.1 This chapter considers the issues related to exemptions or exceptions,
appeals, and review processes in access to medical records regimes. Many
submissions commented upon these aspects of the proposed amendment. [1]
The Committee noted from the evidence that exemptions, while regarded
as necessary and appropriate in certain circumstances, nevertheless presented
difficulties when interpreted too narrowly or restrictively.
6.2 In the public health sector in Australia under Freedom of Information
(FOI) legislation, and in access to medical records schemes overseas,
exemptions to access apply. Exemptions are in place either for the protection
of physical or mental health of the individual (as might apply in the
case of access to medical records), or in other instances, as in FOI legislation,
for the protection of the public or nation, or to preserve the personal
information and confidentiality of third parties. [2]
While exemptions are necessary, review and appeals processes which allow
an individual to seek corrections to their records, and/or challenge decisions
made by those in possession of a medical or health record, are also essential
to a national legislative access to medical records regime.
6.3 The Attorney-General's Discussion Paper, Privacy Protection in the
Private Sector, referred to exemptions in IPP 6, Access and Correction
of Personal Information. IPP 6 gave an individual access to his or her
personal information but set out exemptions in recognition of `other competing
interests'. These included, among other exemptions: the safety of any
individual; the privacy interests of other individuals, and; the physical
or mental health of individuals. [3]
6.4 In the access to medical records regimes operating in the United
Kingdom and New Zealand, exemptions to access in specified and/or well-defined
circumstances may be exercised under legislation. The Committee received
evidence which confirms that specified exemptions will be necessary in
a national access regime in Australia. It is acknowledged that in the
sensitive area of personal health information, the requirement for individual
access to personal health information is paramount, but in certain circumstances,
this may need to be balanced against objective clinical assessments and
professional judgments.
6.5 The Committee sought a range of views from organisations and individuals
and looked at exemptions which apply in other overseas access to medical
and health records regimes.
Exemptions to access to medical records
6.6 Senator Neal's amendment proposed that a provider may refuse to allow
access to medical records if the provider `reasonably' believed that allowing
access would be `likely' to cause serious harm to the mental or physical
well being of an individual. The Committee examined the implications of
exemptions on the grounds of what the medical profession refers to as
therapeutic privilege. `Therapeutic privilege' means withholding personal
health information from an individual in the belief that such information,
if known, would cause mental or physical harm to the individual concerned.
The therapeutic privilege exemption is currently provided for in FOI legislation
in NSW. [4] In Victoria, under FOI legislation,
consumers can be refused access to the record where such information risks
causing harm to others. [5]
6.7 Under the 1993 Medicare Agreement, consumers in the public health
sector have rights of access to their medical records. Under the Medicare
Agreement, all States and Territories are required to develop a Public
Patients' Hospital Charter. The model Charter, developed by the Commonwealth
and States and Territories after nationwide public consultations, includes
a right for consumers to access information in their personal health records,
but there are exemptions: those claimed for reasons of `therapeutic privilege',
and those claimed on the grounds of confidentiality and the rights of
third parties. [6]
6.8 State Public Health Charters set out consumers' rights to access
personal health information with reference to exemptions. Each Medicare
Charter has minor variations. For example, the Northern Territory Public
Patients' Hospital Charter, states that consumers have the right to access
information in the medical records `unless the doctor believes the information
would be damaging to [their] health or the outcome of [their] treatment'.
[7] The Western Australian Medicare Public
Patients' Hospital Charter states that `access to your medical record
can be denied if reading any part of the record could endanger your health,
risk the safety of a member of the community and/or endanger the privacy
of another person'. [8]
6.9 The AMA submitted that in claiming therapeutic privilege, the decision
to refuse access to medical records on the grounds of potential harm to
the mental or physical well being of an individual is a clinical one,
made by a practitioner with the full knowledge of the clinical state of
the patient involved. Accordingly, such decisions are `not made capriciously
or vexatiously'. [9]
Psychiatric records: special cases?
6.10 The Committee heard evidence on the question of access to psychiatric
records which some argued needed to be considered as a special case. The
Royal Australia and New Zealand College of Psychiatrists (RANZCP) argued
that `patients suffering from psychosis or patients with personality orders
should be exempt from gaining access to their medical records'. RANZCP
cited the potential for self harm to be inflicted by the patient. It was
also suggested that providing access to medical records to some patients,
for example, those suffering from psychosis, or patients with personality
disorders, may also pose a risk of harm to the treating psychiatrist and
`to family, relatives and other third parties who provided information
to the psychiatrist in the interest of patient care'. [10]
6.11 It was clear to the Committee that there are those in the community
who believe that potential problems arise when exemptions are claimed
by medical practitioners. Consumers' Health Forum (CHF), for example,
was concerned that `stakeholders ... used arguments of possible harm to
consumers from disclosures contained in privately held medical records
to protect their own interests'. [11]
When the onus of `reasonable belief' of mental or physical harm remains
solely in the hands of the provider concerned, there may be conflicts
of interest. There were suggestions that consumers without access to an
independent arbitrator or review body, could be continually refused access
on the grounds of `reasonable belief' or therapeutic privilege for the
wrong reasons. This might occur when a psychiatric or general medical
record contained inappropriate comments which a medical practitioner or
health service provider wished not to disclose. [12]
6.12 PIAC, the Chairman, NSW Privacy Committee, and the Mental Health
Legal Centre (MHLC) argued that classes of records, such as psychiatric
records, should not be exempted. PIAC pointed out that medical literature
indicated that the benefits of patients accessing their records apply
equally to psychiatric records as to physical health records. [13]
The Chairman, NSW Privacy Committee advised that in the public health
sector in New South Wales, no distinction is drawn between a psychiatric
record and an ordinary medical record. [14]
MHLC suggested that to single out psychiatric records was to suggest that
is was `unsafe' to release psychiatric records and to discriminate against
people with psychiatric disabilities. The only exemption acceptable to
MHLC in this instance would be where a provider `reasonably believes that
there is a very serious risk to life or physical safety, and where the
provider owes a legal duty of care to the person facing the risk'. [15]
6.13 MHLC submitted that there is a need to ensure that exemption, or
any power to refuse access, is not abused on the basis of assumptions
made about the impact disclosure will have on someone with a particular
illness or disability:
It is crucial that misconceptions about the dangerousness of
people with psychiatric disabilities, or misconceptions about lack of
knowledge as to their own best interests not be fuelled, or used to
justify refusal to give access ... It is all too easy for providers
in some cases to use such a provision to deny information where there
is really no risk. [16]
6.14 The ACT's Commissioner for Health Complaints commented upon suggestions
that exemptions might be claimed for psychiatric records. In the ACT Commissioner's
opinion, it would be wrong to exempt such records because there is usually
more information contained in psychiatric records which patients need
to be concerned about in terms of privacy. The ACT Commissioner argued
that privacy provisions in relation to psychiatric records were important
and that it was essential to keep psychiatric patients well informed.
In the ACT Commissioner's opinion, `there is no reason why the [psychiatric
patient] would be more at risk than other people from knowing what is
in [the record]'. [17]
6.15 CHF advised the Committee that providers with full discretion to
decide whether to grant access might discriminate against consumers with
a history of mental health problems. Like PIAC and the ACT Commissioner,
CHF argued that it should not be presumed that people who use mental health
services would not benefit, in the majority of cases, from access to their
records. CHF warned that there was the potential for discriminatory treatment
of people who consult for mental health problems denying them equal rights
of access to information. [18]
6.16 The NSW Association for Mental Health submitted that they do not
believe that there is any justification for a general exemption for psychiatric
and mental health records. According to the Association, `practical experience
has shown that the harmful disclosures provision of the existing Freedom
of Information legislation, and the ability to withhold certain information
on a person's file without withholding the whole file from that person,
works well'. [19]
Therapeutic privilege
6.17 The Department of Health and Family Services (DHFS) advised that
it was appropriate that certain exemptions concerning patient access to
medical records be applied relating to: (1) the privacy interests of others;
and (2) therapeutic privilege based on the physical or mental health of
individuals. Referring to the considerations of the Joint Working Party
which will develop a health information privacy code, DHFS suggested that
there were key issues to be considered in relation to therapeutic privilege.
DHFS suggested that exemptions sought on the basis of therapeutic privilege
needed to be carefully tested, ie, that a practitioner's `reasonable beliefs'
were reasonable, and that harmful consequences were `likely, serious,
or imminent'. [20]
6.18 Applications of any such test placed serious responsibilities upon
a review body. Referring to the arrangement set out in Senator Neal's'
proposed amendment, the Health Insurance Commission (HIC) noted that claims
for exemption on therapeutic privilege `reasonable belief' grounds involved
a clinical judgment. HIC advised that if it was designated to arbitrate
on appeals for or against exemptions, it would not have the necessary
material, expertise, or resources to assess such claims. [21]
6.19 United Medical Defence (UMD) supported exemptions to access and
agreed that doctors should be able to withhold records on grounds of therapeutic
privilege. UMD suggested that if a patient was refused access and still
wanted to pursue the matter, then an appeal could be lodged. [22]
The issue of appeals and reviews is discussed below.
6.20 UMD also raised the question of legislative protection for practitioners
against actions for damages caused by disclosure to an individual of personal
health information, provided a record was truthful and not malicious.
Referring specifically to information on mental status or terminal illness,
UMD stated that medical practitioners worried about disclosing potentially
harmful information to patients and argued for legislative protection
on the grounds that medical practitioners could not be expected to know
whether a certain piece of information might cause distress to a particular
patient. UMD argued that if legislation made access to personal health
information a right, then patients `should be ready to accept and cope
with any information available'. UMD stressed, however, that health professionals
should be present with a patient to provide an explanation and reassurance
`to reduce the risk of harm'. [23]
6.21 While Senator Neal's amendment did not specify that a medical provider
should be present to provide explanations to an individual about information
contained in his/her personal health record, there was consensus that
this should occur wherever possible and practicable. Time and cost factors
involved in providing oral explanations in relation to medical records
have been discussed in Chapter 3.
6.22 The Victorian Health Services Commissioner submitted that exemptions
should only be used in rare cases when, for instance, it was felt that
the applicant may misunderstand the record and thereby suffer harm. It
was suggested that in such instances, the release of a record could be
made to a person nominated by the applicant, either the provider or another
provider, for the purposes of gaining an explanation. The reasons for
exemption against disclosure should always be stated. [24]
6.23 CHF submitted that arguments of possible harm to consumers from
information contained in privately held medical records has been used
to protect providers' interests. While conceding that there were circumstances
when access to records might not be in a consumer's best interest, CHF
suggested that:
in many circumstances, the concern of service providers about
potentially harmful disclosures may be due either to the inappropriate
nature and content of the record keeping ... a reluctance to allow scrutiny
by consumers or other third parties to their approach to treatment,
or a reluctance to share all critical information with the consumer.
[25]
6.24 The NHMRC's Guidelines for medical practitioners on providing information
to patients state that `it is not appropriate to withhold information
because the patient might be disconcerted or dismayed, or because the
doctor finds the giving of the particular information unpalatable'. [26]
6.25 The Federal Privacy Commissioner made a number of constructive comments
in relation to exemptions in an access to medical records scheme. While
acknowledging the need for exemptions in certain circumstances (also referred
to as `exceptions'), the Federal Privacy Commissioner expressed the view
that if exemptions were too broadly defined, exemptions could be claimed
for inappropriate reasons:
Any effective scheme must deal with the issue of exception to
individuals having access to their health information. I acknowledge
that there may need to be some limitations placed on this right, or
special arrangements made in some circumstances, for example, where
it is reasonably believed that access to the record is likely to prejudice
an individual's health. ... Most FOI legislation in Australia also includes
safeguards and/or exceptions where disclosure of information may damage
a person's well being. ... However, exemptions in relation to these
circumstances should not be so broadly framed that they could undermine
the general principle that individuals should have right to have access
to their own health information. [27]
6.26 The Australian Law Reform Commission (ALRC) expressed its concerns
to the Committee about provisions for exemptions in access to medical
records legislation. ALRC cautioned against too broad and unstructured
discretions being given to health care providers with respect to denying
access to individuals. [28] The ALRC
argued, for example, that referring to a medical practitioner's `reasonable'
belief that releasing personal health information could cause mental or
physical harm, was problematic. `Reasonable' was, in their view, `a very
difficult word' which relied upon one individual's perceptions of another
individual's potential reactions.
6.27 The ALRC's review into the operation of the Freedom of Information
Act, suggested that health care providers were using the provisions the
FOI Act `not to disclose at all or making it very difficult by saying
[information] could only be disclosed to another doctor'. [29]
The ALRC's recommendation in that review was `that there would only be
very rare circumstances in which disclosure of information would result
in injury'. [30]
6.28 The ALRC, like UMD, suggested that disclosure of personal health
information by a health care provider should be made in a supportive environment.
[31]
Review bodies and appeals
6.29 Senator Neal's amendment proposed the Administrative Appeals Tribunal
(AAT) as the appeal and review body responsible for examining claims against
decisions relating to refusal of access and exemptions. [32]
The Committee received evidence on peer review bodies.
6.30 Under Senator Neal's amendment, the HIC would play an initial role
in the review of decisions related to access and exemptions. The HIC advised
of other existing institutions which might be adapted to support the establishment
of and compliance with a voluntary code. HIC suggested that medical Boards
in each State and Territory may be able to consider access to patient
records or the appropriateness of withholding access in certain situations.
HIC advised that these Boards are also State Disciplinary Boards. Under
the Health Insurance Act 1973, a Professional Services Review Committee
(PSRC) was established which can hear matters of possible inappropriate
practice referred to it by the HIC. Appeals made by practitioners' against
any findings of the PSRC may be heard by the Professional Services Review
Tribunal (PSRT) or the Federal Court.
6.31 In appeals relating to Social Security, an independent Social Security
Appeals Tribunal (SSAT) was established in 1988 in States and Territories
to consider appeals by people not satisfied with decisions made by the
Department. From that time the Tribunal was able to make final decisions.
A prior review by an Authorised Review Officer has been mandatory since
1993. Appellants not satisfied with an SSAT decision have a further right
of appeal to the AAT. [33]
6.32 The AMA was opposed to the establishment of another appeals body,
arguing that mechanisms were already available to have decisions related
to access reviewed through medical Boards in each State, or through Health
Complaints Commissioners. The AMA advised that Medical Boards have certain
powers of enforcement in their orders, and that Health Complaints Commissioners
offer processes of mediation and conciliation. The AMA suggested that
to create a new bureaucratic review body or to refer matters into the
court system, would increase costs to patients and society. [34]
6.33 Mediation and conciliation processes are offered by Health Complaints
Commissioners in the States and the ACT. Health Complaints Commissioners
currently still need to refer appeals in the public health sector to the
AAT or the Federal Court for enforcement. It is recognised, however, that
there is a need for any review and appeals body to act independently of
vested health consumer or provider interests in order to maintain credibility.
6.34 The UK and New Zealand access to medical records schemes both contain
exemptions and mechanisms for appeals. The UK legislation allows complaints
from those who believe that they have not received all the information
they are entitled to make an appeal direct to a court. [35]
6.35 The New Zealand Privacy Act, provides that reasons for refusal shall
be given, and the grounds in support of that reason shall also be given.
Under the Act an individual may request the Privacy Commissioner to seek
an investigation and review of the refusal. [36]
6.36 The SSAT provides a modus operandi and panel composition which
may provide a useful model. An SSAT panel normally comprises three or
four members, one qualified in law, one with a background in social welfare,
and an executive member experienced in, and knowledgeable of, Department
of Social Security and Department of Employment, Education, Training and
Youth Affairs' policy. When the panel is hearing a medical appeal, a qualified
medical practitioner is often included as a fourth member. [37]
This panel composition, with an executive member experienced in, and knowledgeable
of DHFS policy, might be readily translatable into an appeal and review
panel to review and hear appeals against exemptions to access to medical
records.
Scrutiny of a Commonwealth access to medical records scheme
6.37 The Committee received submissions on the provision for parliamentary
scrutiny and oversight.
6.38 DHFS suggested that there several ways in which Parliament could
have some level of scrutiny in relation to the development and implementation
of a health information privacy code. It suggested by DHFS that DHFS,
the Attorney-General's Department, and, possibly, the Federal Privacy
Commissioner should have involvement in the development of such a code.
These agencies are already accountable to Parliament through the routine
examination of annual reporting requirements and the Senate estimates
process. DHFS also suggested that if an independent panel or body was
charged with handling the compliance process, it could also be required
to produce public reports on the implementation of the code. [38]
6.39 United Medical Defence (UMD) agreed that regular parliamentary reporting
of problems associated with an access to medical records scheme was warranted.
UMD proposed the view that the system `should function without burdensome
reporting requirements'. UMD did not believe that doctors should be required
to put in annual reports on, for example, the numbers of requests for
access. [39]
6.40 The Victorian Health Services Commissioner suggested that reports
to Parliament via a central body on the functioning of a legislative scheme
was required. The Commissioner suggested that the Federal Privacy Commissioner,
Commonwealth Ombudsman or a Complaints agency representing the States
and Territories could carry out this role. [40]
6.41 The Consumers' Health Forum (CHF) submitted that there was a case
for parliamentary scrutiny to monitor the effectiveness of provisions
under any legislative scheme during the first years of introduction. CHF
suggested that regular reports to Parliament would document any causes
for concern and provide information on, for example, the number of recognised
breaches and appeals. [41]
Operation of legislation
6.42 The Committee considered evidence relating to the operation of legislation
and the question of retrospectivity. The Committee believes that there
needs to be a compromise which would balance the concerns of patients
and health consumers, and medical practitioners and other health service
providers. Clearly, it is important that consumers have access to matters
of fact relating to their earlier medical and other health record. Equally,
medical practitioners have argued that records should not be judged when
written before any legislation was in effect.
6.43 All records are important for the purposes of complaint and legal
action. Evidence provided to the Committee indicates, however, that any
access to medical and other health records legislation should be prospective
in its operation, with the exception of factual information, including
test results, held in a record prior to the commencement of legislation.
[42] The proposed ACT access legislation,
for example, will only apply to health services and records or entries
made on an existing record, where these occurred after the date of commencement,
except so far as matters of fact are concerned, when a person concerned
will have a right of access to these, whenever the records were prepared.
[43] This proposal was supported by
PIAC in its comments relating to retrospectivity in Whose Health Records?
[44] The Committee also supports this
balance operating in any national legislative scheme.
Recommendation 11: The Committee recommends that national access
to medical and other health records legislation be prospective in its
operation, except so far as matters of fact are concerned, when an individual
will have a right of access to these, whenever the record was prepared.
Recommendation 12: The Committee recommends that subject to Recommendation 15,
concerning general exemptions, that no further exemptions should apply.
In all circumstances, the contents of medical or other health records
should be explained to a patient by a professional who understands the
patient's clinical details.
Recommendation 13: The Committee recommends that reasons for
exemptions and refusal to grant access to medical or other health records
should be stated to the applicant, and that exemptions should be fully
supported with evidence which should be provided to the applicant.
Recommendation 14: The Committee recommends that an appeal body
should be established, that the appeal body should be independent, and
that suitably qualified people should be appointed to the appeal body.
Recommendation 15: The Committee recommends that exemptions to
access to medical or other health records be restricted to circumstances
were a medical provider or health service provider believed that allowing
access would be likely to cause serious harm to the mental or physical
well being of the patient, or to a third party, or to the privacy of a
third party. Such claims would require supportive evidence.
Recommendation 16: The Committee recommends that if a patient
wished to challenge a refusal to grant access to a medical or other health
record, then an appeal process through an independent appeal body could
be available and handled within a stipulated period.
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FOOTNOTES
[1] Proposed amendment, Part 19 AD (5) and Part
19 AE Review of Decisions, Health Insurance Amendment Bill (No. 2) 1996.
[2] The Australian Law Reform Commission (ALRC),
outlined the general principles of exemptions in the national or public
interest as follows: `The public interest in the general availability
of government information will in some cases be outweighed by the public
interest in protecting information from disclosure. The purpose of the
exemption provisions [in FOI legislation] is to balance the objective
of providing access to government information against legitimate claims
for protection'. Open Government: a review of the federal Freedom of
Information Act 1982, Report No. 40, Australian Law Reform Commission,
1995, p. 91 (8.1).
[3] Privacy Protection in the Private Sector,
Discussion Paper, Attorney-General's Department, September 1996, p.16.
[4] FOI Act 1989 (NSW) s31 (4).
[5] FOI Act 1982 (VIC) s16.
[6] PIAC, Whose Health Records, op.
cit. p.14.
[7] ibid.
[8] The Western Australian Medicare Public
Patients' Hospital Charter, s 8, p.15.
[9] Submission No.34, p.21 (AMA).
[10] Submission No.38, p.2 (RANZCP).
[11] Submission No.28, p.4 (CHF).
[12] ibid.
[13] Submission No.44, p.5 (PIAC).
[14] Transcript of Evidence, p.53 (NSW
Privacy Committee).
[15] Submission No.27, p.3 (MHLC).
[16] ibid.
[17] Transcript of Evidence, p.192 (ACTCHC).
[18] Submission No.28, p.4 (CHF).
[19] Submission No.60, p.1 (NSW Association
for Mental Health).
[20] Submission No.54, p.16 (DHFS).
[21] Submission No.54, p.13 (HIC).
[22] Submission No.31, p.13 (UMD).
[23] 11 ibid, p.11.
[24] Submission No.53, p.6 (VHSC).
[25] Submission No.28, p.4 (CHF).
[26] Guidelines for Medical Practitioners on
Providing Information to Patients, National Health and Medical Research
Council, 1993, (4), p.7, cited in Submission No. 28, p.4 (CHF).
[27] Submission No.25A, p.8 (Federal Privacy
Commissioner, HREOC).
[28] Transcript of Evidence, pp.20-21
(ALRC).
[29] See, Professor M. Allars, Report of
the Inquiry into Pituitary Derived Hormones in Australia and Creutzfeldt-Jakob
Disease, AGPS, 1994, pp.703-4, which said that the Department of Health
(Clth) had interpreted the FOI legislation much more restrictively than
was necessary. The report recommended an amendment to the confidentiality
provision of the National Health Act and a review of the Department's
policy on access to records.
[30] Transcript of Evidence, p. 24 (ALRC).
See, also ALRC Report No. 40, Open Government: a review of the federal
Freedom of Information 1982, 1995, Para 10.21: Indirect disclosure
of personal information: s 41 (3), p.135.
[31] ibid.
[32] A preliminary discussion of the role of
the AAT appears in Paragraphs 4.100 and 4.101. The Administrative Appeals
Tribunal Act 1975 sets out the establishment, powers and modus
operandi of the Tribunal. The AAT has jurisdiction over a wide range
of administrative decisions. Parts IV of the AAT Act relates to reviews
by the Tribunal of decisions, and Part VI relates to confidentiality of
information, lodging of documents, and Registries, all of which are pertinent
to an access to medical records regime. As noted, the Federal Court provides
the last line of appeal.
[33] Department of Social Security, Annual
Report 1995-1996, Social Security Appeals Tribunal. A description
of the SSAT's operation and functions, together with a description of
the Tribunal's panels is found on pp. 336-367. The SSAT is headed by a
National Convener. In accordance with s 1342 of the Social Security
Act 1991, the National Convener is required to provide an Annual Report
to the Minister for Social Security on the SSAT's operations.
[34] Transcript of Evidence, p.133 (AMA).
[35] Information Sheet for patients' access
to Health Records Act 1990, Appendix 4, p.29.
[36] Privacy Act 1993 (NZ), Part IV
Good reasons for refusing access to personal information. Section 44 (a)
(ii), (b), Privacy Act 1993 NZ.
[37] Department of Social Security, Annual
Report 1995-1996, p.367.
[38] Transcript of Evidence, p.213 (DHFS).
[39] Submission No.31, p.13 (UMD).
[40] Submission No.53, p.6 (VHSC).
[41] Submission No.28, p.5 (CHF).
[42] See Recommendation 44, Review of Professional
Indemnity Arrangements for Health Care Professionals: Compensation and
Professional Indemnity in Health Care, Final Report, November 1995,
AGPS, p.xxii.
[43] Health Records: Privacy and Access,
ACT Government Position Paper, May 1997, p.28.
[44] Whose Health Records? Attitudes to
consumer access to their health records and the need for law reform,
PIAC, October, 1996, p.37.