REPORT ON ACCESS TO MEDICAL RECORDS
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CHAPTER 3 - BROAD ISSUES RELATING TO ACCESS TO MEDICAL RECORDS
What is the problem to be fixed?
3.1 This chapter deals with a wide range of issues related to access
to medical records. The question heading this section about the `problem'
of access was put in the following terms by a representative of the AMA:
The real question is: what problem are you trying to fix. Our
submission suggests that [there] is not a big problem out there in the
real world, that for most doctors the request for access to their records
is rare. Most doctors allow access. With most doctors, when they are
completing their notes, often, depending on the circumstances, patients
can see what the doctor is writing. [1]
3.2 A substantial amount of evidence presented to the Committee revealed
that there are a number of real problems to be fixed in the `real world'.
The extent of the problems begin with providing an acceptable definition
of what constitutes a medical record or, as some witnesses have suggested,
a record more properly called a health record. Other problems include
the practical management of records, improving standards of accuracy in
and security of medical records, meeting health consumers' increased demands
for information, and the role of Health Care Complaints Commissioners
and other appeal tribunals.
3.3 For the Committee, and for the public at large, however, the greatest
problem is presented by the medical profession's fundamental opposition
to a legislative right of access, and the failure of the medical profession
to admit that in the private health sector, patients have been, and will
continue to be, denied access to their medical records. Refusal of access
to medical records will continue whilst there is a failure to act to ensure
equality of access for health consumers in public health arena. This is
the problem to be fixed.
Definitions of a medical/health record
3.4 The amendment proposed by Senator Neal included a definition of a
medical record as a record containing:
(a) information about the individual's health, including his
or her medical history; or
(b) information about any disabilities the individual has or
has had; or
(c) information provided by or for the individual in connection
with the donation by the individual of a body part of body substance
of the individual. [2]
3.5 There is general consensus that the term `medical record' is too
narrow. Submissions received from health consumers' advocacy groups, health
care professionals, the AMA, academics researching in the field of public
health, records management specialists, and specialist colleges, proposed
a wider range of information which may constitute a patient or health
consumer's record.
3.6 The School of Public Health, Curtin University of Technology, suggested
that `a broad perspective be taken of what constitutes a medical/health
record, in light of current technology and practices', citing the advent
of telehealth:
The temptation is to reflect on the past and take a narrow view
of a “medical record”, ignoring videos, audio tapes and other
alternate media and emerging technologies. [3]
3.7 It is evident that with a view to future developments, the broadest
definition should be adopted to take into account all forms of health
care records, including electronic records and video records.
3.8 Whilst matters relating to the serious issues referred to in part
(c) above, relating to information provided by or for the individual
in connection with the donation by the individual of a body part of body
substance of the individual, (eg, transmission of genetic material,
donation of body parts, donation or sale of semen, ova, or fertilised
ova), was well beyond the scope of this inquiry, the Committee believes
that these issues, both moral and ethical, need to be the subject of critical
review, including consideration of the privacy aspects, and access to
medical and health records.
3.9 Where patients' records are located across the arena of health sector
provision, presents an associated problem. An individual's health records,
in all forms, may be scattered, eg, in one or several private general
medical practices, in government clinics, public and private hospitals,
and in other arenas of health provision, and these are often in different
geographic locations. In each location, records may be differently defined
or classified.
3.10 PIAC suggested in its report, Whose Health Records? that health
records in general medical practice are made up of different pieces of
information including consultation notes, medical history, test results,
letters of referral, records of consultation between doctors and other
health providers, observations and opinions about the consumer and details
of treatment. Hospital records would include similar information, in addition
to admission forms, consent forms, medication sheets, progress notes,
nursing care notes, x-rays and pathology reports. Specialist records may
include pathology reports, CAT scans and test results. Psychiatric reports,
taken in hospital and specialist practice, are likely to include detailed
family history, clinical assessments and prognosis, observations about
the consumer's personality and details of treatment. [4]
3.11 The Health Consumers' Network (HCN) wrote broadly in its submission
on the constitution of a medical record. According to HCN, a medical record
`must include all information and any record created by a health care
provider as part of the treatment of a consumer including doctors, dentists,
nurses, allied health providers, psychiatrists, etc., ... clinical records,
progress notes, nursing care notes, detailed family histories, clinical
assessments and prognosis, observations about personality and details
of treatment given'. [5]
3.12 In its description of the nature of health records, the Health Issues
Centre (HIC) (Vic) divided health records maintained by health practitioners
into four levels: (1) Identification details including name, address,
date of birth; (2) financial information such as health insurance
status, eligibility for government benefits, employment status and details;
(3) social information such as family relationships and arrangements,
drug and alcohol use and other lifestyle matters, sometimes including
a wide variety of information such as sexual partners or practices; (4) clinical
or treatment data. [6]
3.13 The Commissioner for Health Complaints (ACT) provided a broad definition
of a health care record, that is, a record which includes details of treatment
and prognosis, for the purposes of intended legislation. A health care
record `would include any information relating to the physical, mental
or emotional health of a person or their personal circumstances, where
the person can be identified from the information held by the record-keeper'.
[7]
3.14 The Health Information Management Association of Australia (HIMAA)
submitted that industry terminology in attempting to define a medical
record is, in fact. `steering away' from the term `medical records' to
terms such as `health records' to indicate a broader range of record types.
In HIMAA's submission, it was suggested that `health records would include
records relating to individual patient/clients, but health professionals
retain information in a variety of formats'. Other information, including
`databases, group session records, practice registers and/or appointment
books, and professional diaries' would not `sit easily' within the concept
of a `health record'. [8]
3.15 The AMA differentiated between a `medical record' and a `medical
file'. Accordingly, a `medical file' may contain a number of documents
including `the notes of the treating practitioner, correspondence with
the patient, letters of referral, photographs and reports from other doctors'.
A medical file may also contain `documents other than the document created
by the primary health care provider, including test results, x-rays and
other radiological images, reports ... referrals ... and requests from
third parties such as insurers'. [9]
3.16 The AMA pointed out that in private medical practice, the term `medical
record' generally refers to the document `prepared by the treating practitioner
as an aide-memoire for the on-going treatment of the patient'. The AMA
differentiated between private practice notes and notes `created in a
hospital setting'. Hospital notes were `intended as a communication between
a number of people who may be involved in a patient's care'. Referring
to psychiatric practice, the AMA suggested that `the record may reflect
a mode of therapy rather than document the patient's medical history.
The factual information recorded is what has actually been said by the
patient'. [10]
3.17 The Royal College of Nursing Australia (RCNA) observed in its submission
that the proposed amendment referred to `medical records' which in their
opinion was too narrowly defined, and submitted that the term `patient
record' is now more commonly in use. [11]
RCNA suggested that there was a need for much wider consultation with
the nursing profession in relation to nursing records which include such
things as `care plans, primary nursing reports, nursing diagnoses and
nursing observations and therapeutics'. In a hospital setting, RCNA referred
to `clinical records'. [12] When questioned
by the Committee on a broad definition, RCNA agreed that a patient record
would include such things as x-rays and imaging material used in the care
of the patient, and that a patient record would be the record of all health
professionals or providers involved in a patient's care. [13]
3.18 In its submission, the School of Public Health, Faculty of Health
Sciences, La Trobe University, provided an extensive definition of
a medical record:
The medical record is a compilation
of facts pertinent to a patient's or client's illness, care and treatment.
It comprises mostly notes, results and reports which are created and
written by the health professionals who contribute to the care and treatment
provided. The medical record should contain sufficient data to identify
the patient or client, support the diagnosis or reason for the heath
care encounter, justify the treatment, and accurately document the results.
[14]
3.19 Professor Saltman defined records differently, differentiating between
a general practitioner's record which was usually a `longitudinal' record
of a person's health, and a hospital record which was usually an `episode-based'
record. In her view, there were `lots of boundaries' in health records.
The difference in records, however, did not alter the fact that a legislative
right of access to health records was necessary. [15]
3.20 The United Kingdom Access to Health Record Act 1990 defines a `health
record' as a record which:
(a) consists of information relating to the physical or mental
health of an individual who can be identified from the information,
or from that and other information in the possession of the holder of
that record; and
(b) has been made on or on behalf of a health professional in
connection with the care of that individual. [16]
3.21 The New Zealand Health Information Privacy Code 1994 refers to health
information relating to identifiable individuals. No specific definition
of a medical or health record is provided, rather the Code defines its
scope and application. The Code covers information about an individual's
medical and treatment history, disabilities or accidents, contact with
any health or disability service providers and information about donations
of blood, organs etc. The Code applies to all agencies providing health
or disability services from the largest hospitals through to sole practitioners.
[17]
3.22 The Federal Privacy Commissioner used the term `health record' in
the Human Rights and Equal Opportunity Commission's submission. [18]
This was used as a broad term in relation to general health records:
We were anticipating including in health records the whole range
of information that has not only to do with the medical or clinical
records of the patient, but maybe alternative health care that might
have been contributed to it by physiotherapists, perhaps by pharmacists.
[19]
3.23 The Commissioner stated that it was necessary to see the term broadly
defined so that no barriers were placed in the way of achieving access
because a record `did not quite fit the definition'. [20]
3.24 Within the Australian health sector there has clearly been discussion
as to what constitutes a health record, although no absolute definition
currently exists. All stake-holders will need to address this issue if
effective national legislation is to be enacted. The Committee supports
the broadest coverage to ensure that the situation described by the Federal
Privacy Commissioner, that a record `does not quite fit the definition',
does not occur.
Depending on the circumstances' access to health records
3.25 The legal concept of ownership of medical records in the common
law has been tested in the Breen v Williams case. The law states that
a private medical practitioner in general or specialist practice `owns'
and thus, controls access to the medical and health records relating to
his or her patients. Owning a medical record in private medical practice
thus confers power and ultimate control over access to information held
in a record.
3.26 The AMA opposes a legislative right of access to medical records
because, in its view, patient access is `already possible under the current
system'. [21] The `current system' is
ultimately a subpoena if a doctor refuses access to a record. The AMA
argued that doctors rarely refuse access and that if access was refused,
patients could make use of `mechanisms available to have that decision
reviewed'. [22] In Breen v Williams,
a report was offered to the patient. [23]
In many respects, this accords with the 1996 patient access to medical
records policy of the AMA's Queensland Branch which states that:
Upon request by the patient, the doctor should make available
to the patient a copy of the health summary of the medical information
contained in the medical record. [24]
3.27 The AMA's Federal Council Guidelines (1993), endorses a patient's
right to `all relevant factual information contained in the medical record'.
[25] Referring to the situation in the
`real world', the AMA's representative of Health Services and General
Practice, suggested that:
depending on the circumstances, patients can see what the doctor
is writing. And so all of a sudden to create a legislative framework
with the cost, both in privacy and resource base, is hard to justify
at the moment. [26]
3.28 The AMA relies upon the operation of its own voluntary code and
other tribunals such as Health Complaints Commissioners. The AMA's representatives
clearly found it difficult to accept the notion that patients in the private
health sector suffer from a form of discrimination. The AMA asked the
Committee to provide a justification for a legislative framework which
would provide patients with legal rights in the private health sector
which apply under FOI provisions in the public health sector.
3.29 The Committee reiterated the point that under the law as it stands,
patients must rely upon the discretion of a doctor to grant access, and
that despite the efforts of commissioners, tribunals, and medical boards,
patients may still be denied access. Referring to specific cases which
had been drawn to the Committee's attention, the AMA's representatives
were advised that many people are still not aware of the avenues for complaints
as well as the conciliation services and advice offered by various Health
Complaints Commissioners. [27]
3.30 Over the past decade or so, consumers have demanded more information
about products and services they buy. [28]
Access to information provides consumers with the ability to make informed
choices and provides consumers with more control. The demand for information
by consumers extends into the health care sector but, as the Federal Privacy
Commissioner noted, `increased control by health consumers over information
concerning them represents a challenge to the thinking of many in the
health professions'. [29]
3.31 Ownership of medical or health records confers a number of administrative,
if not moral, obligations upon the owner of such records. This includes
an obligation to provide access to the record when requested by an individual
whose health information is contained in a record. The ownership of a
record is, in one sense, a form of custodianship since the record can
be transferred to another `owner' when, for example, a medical practice
is sold. Another circumstance might be when a patient transfers to another
medical practice and requests that records be transferred.
3.32 The Committee was advised that refusal to transfer records in circumstances
that did not involve litigation, also occurs. A medical practitioner,
an owner of records, may not wish to loose `goodwill' and may refuse to
pass on a record to a rival practice. In one case related to the Committee,
a patient was told that their records were `the property of [the] group
practice', and would not be transferred. [30]
3.33 The lack of a legal right of access to privately held medical records
is a major concern to many health consumers and is a significant anomaly
within the health system. Evidence suggests that access to information
held in health records may positively improve communication between patient
and health care provider; it also may assist in improving health outcomes.
Consumers' Health Forum (CHF) made this point in its submission, indicating
that there were advantages to consumers and to medical practitioners.
A further advantage was that improved communication between practitioners
and consumers could reduce the `misunderstandings that can lead to litigation'.
[31]
3.34 The AMA has set guidelines relating to access to medical records
which provides a voluntary code, and there is an expectation that all
members will abide by that code. There are doctors who do not willingly
provide their patients with automatic access to their records, although
statistically the numbers may be small. The impact of refusal of access
should not, however, be underestimated. Evidence provided to the Committee
suggests that there are numbers of people in the Australian community
who feel deeply distressed at not having access to their records, or who
have had to resort to time-consuming and expensive legal action to obtain
copies of their records.
3.35 Health Care Complaints Commissioners have amassed data which indicates
that a noticeable proportion of all complaints are related to access to
medical records, although the AMA appeared equivocal about the extent
of the `problem'. The AMA's legal counsel claimed, for example, that in
1996 there was one only official complaint about access to medical records
recorded in New South Wales, and in Victoria there were thirty five. [32]
3.36 Recent Annual Reports of the NSW and Victorian Health Care Complaints
Commissioners, provided a different picture.
3.37 The Health Services Commission's Annual Report reported that 35
complaints were received in relation to access to records, and 14 complaints
were received relating to accuracy of records in 1995-1996. [33]
Of complaints where patients' rights formed the major issue, access to
records and accuracy of records made up nearly one third of issues in
complaints made against general practitioners. [34]
In 1994-1995, 39 complaints were received relating to access to records.
[35]
3.38 The Health Care Complaints Commission (HCCC) (NSW) indicated in
its Annual Report for 1995-1996, that one case relating to access to medical
records had been assessed for conciliation. However, out of a total of
185 telephone inquiries relating to access to records, the Commission
had received 123 telephone inquiries relating to access to records held
in private medical practices. In the year 1995-1996 (July-March), out
of 147 telephone inquiries relating to records, 93 inquiries relating
to access to records held in private medical practices were received.
The level of inquiry relating to access to records held by private medical
practitioners was therefore proportionally high. The HCCC (NSW) informed
the Committee that:
Access, or more rightly lack of access, to medical records is
often a contributing factor to written complaints ... many inquiries
received by the commission frequently have some component of concern
about access to medical records. [36]
3.39 While FOI has assisted patients in the public health sector in accessing
their records, private health sector patients are left with no guarantees
of access. Granting the right of access to a medical record, `depending
on the circumstances', leaves the matter of access entirely at the discretion
of individual medical practitioners. If conciliation fails, patients have
two alternatives. One is to accept the doctor's decision and give up efforts
to obtain access; the other is to enter the litigative process. Neither
course of action is satisfactory to patients who have paid for medical
services and want information about their medical history and treatments.
The Committee believes that access should be a right and should not even
require recourse to FOI to obtain access to records in the public or private
health sector. [37]
3.40 The right of access to personal medical records, the right to correct
incorrect information in medical records, and a legal framework to ensure
access and protect the privacy of personal health records is required
to redress an unequal and unfair situation. The Committee believes that
clear and comprehensive Commonwealth legislation is the only way to provide
all Australian patients an unchallenged right of access to their medical
records.
The benefits of access: better information, better records, better doctor/patient
communication
3.41 The assertion that information withheld could be as harmful as receiving
`bad' information about one's health status is difficult to prove, but
overseas studies and anecdotal information indicates that one of the most
positive outcomes of consumer access to health records is improved communication
and better records. It has been suggested that there is a very strong
relationship between access to medical records and improved quality of
those records. [38]
3.42 PIAC lists a number of arguments in favour of access in its report,
Whose Health Records? According to PIAC's research, consumers will be:
- more involved and informed about their health care;
- more attentive to their health care and more likely to comply
with instructions for medication and treatments;
- more in control of their health care and their lives, and less anxious
about their condition;
- in a better position to give informed consent to treatment;
- better able to ensure continuity and coordination of care by different
health services and when people move or change doctors;
- able to facilitate a more open and equal relationship with the health
care service provider; and
- able to improve the quality of the record by ensuring the information
in the record is accurate and relevant. [39]
3.43 Medical literature also reinforces the benefits of access. A Canadian
study, `Access by Patients to the Clinical Record', supports the view
that records are improved by patient access: `The accuracy of the clinical
record is facilitated by the patient's access to the record'. This paper
referred in particular to the records of psychiatric patients. [40]
3.44 Dr Meg Montague's paper referring to the Australian situation, Consumer
Access to Medical Records, cites a number of studies [41]
which provide evidence that opening up access and better informing consumers,
promotes improvements in patient/doctor relationships, alleviates anxieties
about health status, ensures continuity and quality in health care and
improves record keeping. Dr Montague argues:
More and more people are wanting and expecting to be drawn into
a partnership with their health service provider so that they can ask
questions, be informed, and actively participate in decisions about
treatment and health outcomes ... The large scale expenditure on health
education and health promotion by government at all levels emphasise
the value of people taking responsibility for their own health. Inhibiting
access to records is seen as antithetical to this, while opening up
access and better informing consumers will promote and support this
orientation. [42]
3.45 Medical practitioners aim for complete accuracy in their medical
records and it is certainly the expectation of patients that information
contained in their medical records is up to date, accurate, and completely
confidential. A medical record written in the public or the private health
sector is, of course, always subject to subpoena in the legal discovery
process. This knowledge provides a positive incentive to accuracy.
3.46 As DHFS noted in its submission:
Medical practitioners in the public system already prepare their
medical records in the knowledge that a patient can obtain access under
FOI. Many doctors' practices already bridge both the private and public
sectors and they are unlikely to have different record keeping arrangements
for each sector. [43]
3.47 The Committee was concerned, however, at the views on record keeping
expressed by AAS and RANZCP. AAS suggested that because access to medical
records in public hospitals is now possible under FOI, records `were not
in some respects, as detailed as they used to be when patients could not
get easy access to them'. [44] RANZCP
expressed the view that if access legislation was passed `inevitably'
there would be two records prepared: `There is one that will be available
and one which is not'. [45]
3.48 Access to medical records by patients in the private health sector
would provide opportunities for the medical practitioner to check and
update information with the patient concerned. The Health Issues Centre's
report, The Power of Information: Health Providers, Consumers and Treatment
Records, referred to the accuracy of records, and noted:
Factual errors and omissions can occur on records and a consumer
may be able to give addition important information about their health
history if they are able to view the record. In a study conducted in
the United States, over half of the 125 patients given access to their
records made some correction or addition (Golodetz, Ruess & Milhous
1976). This can also ensure the consumer is not misrepresented on the
record. In addition, consumer access is an excellent accountability
mechanism, encouraging providers to be diligent in the recording of
information. [46]
3.49 Empowering patients by providing access to records was a point made
to the Committee by a number of witnesses. Many consumers believed that
the doctor/patient relationship can be an unequal one and that it is the
doctor who usually holds information. The Australian Federation of AIDS
Organisations (AFAO) provided the Committee with medical literature which
referred to patient's control of their illness and treatment, and the
critical need for patients to be treated as an equal by physicians and
jointly involved in health care decisions. [47]
This equality and sense of control generally involves access to records.
3.50 Finally, in relation to improved records, evidence was given to
the Committee which supported the view that with the introduction of FOI,
medical records in the public health sector had generally improved. The
legislation which provided access was one impetus towards better record
keeping HIMAA suggested that there was still room for improvement and
stated that `clinical documentation is not as good as it might be'. Referring
to one positive outcome of FOI, HIMAA observed:
With the implementation of freedom of information legislation,
the paucity of clinical information was identified and therefore somebody
had to sit with the patient to explain how you got from point A to point
B because the middle bit was not well filled in. We would like to see
... legislation ... to actually improve the quality of documentation
because our members struggle with poor-quality documents every day of
their working lives it is a problem. [48]
3.51 The legislative regimes which allow patient access to their medical
records, (eg, UK, NZ, USA and many European countries), permit patients
to seek corrections of information on their records. FOI legislation in
Australia provides a right to `seek amendment of factual errors in personal
information contained in documents', but this right only applies to patients
treated in the public health sector. The Committee believes the extension
of this right into the private health sector is not only desirable, it
is essential. It will bring more equality in the doctor/patient relationship
and it will encourage, among other benefits, more accurate records and
a higher standard of record keeping.
The cost factor who pays
3.52 Senator Neal's amendment made no provision for the potential costs
involved in providing individuals access to their medical and health records.
The time and cost factor was discussed in relation to search and reproduction
costs, in the time taken to provide explanations of information contained
in a medical or health record, and who would pay the cost.
3.53 In other access to medical and health records regimes, and under
FOI legislation, fees and reproduction costs are payable on application.
Fees are, to some extent, standardised, but different charges may be made
depending on the nature of the request.
3.54 The United Kingdom and New Zealand access regimes provide for charges.
In the proposal for an access to health records regime for the ACT, there
will be charges. [49] There are fees
for FOI applications for personal information. These charges vary from
a flat fee for one folio. Agencies may impose separate charges for photocopying
and supervision. [50] In the UK, fees
are payable. [51] In New Zealand, where
an individual makes a request to a health agency that is not a public
health sector agency, that agency may make a reasonable charge. [52]
3.55 The Committee heard a range of views in relation to cost factors.
It is usual for general medical practitioners and specialists to charge
fees for the provision of reports requested by legal practitioners and
insurance companies. It was difficult to assess how much administrative
time would be involved in locating a medical or health record. This was
entirely dependent upon standards of records maintenance. Photocopying
charges were considered. According to members of the medical profession,
the main cost factor was the time taken to provide an oral explanation
of a record to a patient.
3.56 The Australian Association of Surgeons (AAS) made the point that
records are not always held in one location. Referring to a patient who
had received surgical treatment not in a surgeon's rooms but in a hospital,
a surgeon would be required to explain his or her own notes, but other
`records are spread over a number of sources and ... information would
most likely be recorded in the hospital records'. In AAS's view, under
such circumstances, it would take `an enormous amount of time to explain'.
[53]
3.57 The AMA suggested that providing an explanation to a patient which
took one hour could cost $125 for a general practitioner. This level of
cost was considered to be reasonable, although it was dependent upon the
nature of a record. One estimate was submitted that it would add costs
of up to $10 000 per practice per year. This cost was calculated
on the basis of one request per day, allowing 15 minutes of professional
time and might include locating a record, costs of photocopying, and postage,
followed by the time taken for individual explanation. [54]
3.58 Another estimate was provided by Life Investment and Superannuation
Association of Australia (LISA) who suggested that the cost of the process
would probably be in the order of $50 including everyone's time, including
getting a file out of storage. [55]
3.59 In the ACT Government's Position Paper on proposed access to health
records legislation, it is suggested that a fee of $30.00 will be charged.
This charge currently applies to records access from ACT public hospitals
and other public health care institutions. [56]
3.60 PIAC advised that the New Zealand Health Complaints Commission had
received no complaints from medical and health providers about the costs
of providing medical records or explanations of those records, and that
the New Zealand Commissioner was not aware of any significant costs being
incurred. PIAC was advised that the most extensive records were usually
those in public hospitals:
the biggest records, or the most long-term records, which are
going to be the ones that cost the most to put together if someone asks
for a copy of their record, are in a public hospital. Particularly,
they found most frequently it will be in a public psychiatric hospital,
and that is where you have maybe 20 years of records that have
to be tracked down and that is where it is going to be most expensive
because they are public hospitals.
3.61 The Committee found that other legislative access to medical records
schemes charged fees. The imposition of a fee for providing access to
medical and health records was acceptable, providing that a reasonable
fee, similar to that charged for access to personal information under
FOI legislation. The Committee found that this would be acceptable in
the majority of cases. Hardship cases, however, would warrant a review
or waiver of costs. The costs of photocopying paper records and any time
spent would need to be taken into account, and medical practitioners and
other health care providers in the private health sector would need guidance
on the level of costs which could be legitimately and reasonably passed
on to patients.
Case studies: identified problems
3.62 The Breen v Williams case amply demonstrates the difficulties facing
an individual who attempts to gain access to medical records in the face
of a medical practitioner who refuses, successfully uses the law of property
to effectively withhold a record, and required a patient to guarantee
indemnity in regard to access such records.
3.63 Consumer advocacy groups have been well aware of the difficulties
faced by some individuals who have spent much time and effort attempting
to achieve access to their medical records. The Committee received a significant
number of submissions from individuals and legal practitioners who identified
problems relating to access or, rather, lack of access to their medical
records.
3.64 Problems identified in submissions ranged from access eventually
being achieved through a process of litigation, to the discovery that
medical records had been destroyed making access impossible. In this report,
descriptions of the types of problems experienced are outlined briefly.
3.65 A legal practitioner and a community representative of the Commonwealth's
Privacy Advisory Committee, commented:
In my community practice I have acted for many people who expressed
great concern about their powerlessness in accessing their own medical
records and controlling the use of the information divulged in the supposedly
confidential patient/doctor context. [57]
3.66 Another legal practitioner referred to the difficulties facing patients
seeking their records for the purposes of making personal injury claims:
It has been a matter of great frustration to myself, and also
to colleagues of mine, that we are refused access to medical records
held by our clients' treating doctors. ... To practitioners in this
field [personal injury claims], these records can sometimes be extremely
helpful on an evidentiary basis where it relates to past medical history
and symptoms of a client and may have enormous bearing on the case in
hand. [58]
3.67 A consumer advocate with a local health service wrote about the
difficulties patients experience when, for example, they want access to
and copies of their records in order to seek a second opinion:
Many consumers wish to access records about them held by specialists.
This is especially important to consumers when they wish to seek a second
opinion and can often mean that if the records are made available, expensive
and sometimes risky tests do not need to be repeated. Needless to say,
there is a great deal of reluctance by private practitioners, including
private hospitals to let their patients see the records they hold about
them, let alone give them a copy. [59]
3.68 The Committee noted, however, that similar practices and principles
with respect to access to legal records occurs. If it is appropriate for
long established practices in the medical community to be changed, it
is probably appropriate for similar practices in the legal community to
change.
3.69 The Victorian Health Services Commissioner (VHSC) commented upon
the difficulties facing some patients and doctors who wish to transfer
records from one general practice to another:
Complaints are received by HSC or the Medical Practitioners Board
from doctors stating that they sometimes cannot get access to patients
records from previous treating doctors where the doctor requesting the
record is regarded as having set up in competition to the previous treating
doctor. [60]
3.70 Two individuals referred in their submissions to inaccuracies discovered
in their records when they finally achieved access to their records. One
individual was allegedly informed by her specialist that information that
might `incriminate either himself or any other staff member', had been
removed from her patient records. She was informed later than the records
no longer existed. [61] Another individual
who had instigated legal proceedings and obtained access to her records,
discovered `instances of inaccuracies' in her personal records. These
included:
Some visits not even recorded. Entries made on cards at a later
date. Notes on cards inferring that details were discussed with patient
when they were not. Correspondence between doctors (both GP's and Specialists)
making fallacious statements about what was discussed or advised. Misinterpreting
patient's comments into their own opinion. Only entering details of
one post operative complaint, when in fact several were given over a
period of time. Letter sent by a specialist warning another specialist
that patient was suing another colleague, before he was to begin treatment.
[62]
3.71 Two submissions referred to the destruction of records. One cited
his experience when attempting to access the medical record of his deceased
wife:
I ... sought out all of the relevant (Melbourne) medical practices
(and a private hospital) known to me and have found, without exception,
that no records presently exist of the (now) deceased person access
being impeded by an (apparent) Code of Practice limiting retention of
such records to seven (7) years. [63]
3.72 Another individual from Victoria who wrote in support of access
legislation made the point that `medical records and notes have to exist
to be able to access[ed]':
As with my own experience I have been informed [that] my medical
records have been destroyed by both the private hospital and the specialist.
Private Hospitals are only required to keep patients medical records
for seven years. [64]
3.73 These submissions probably represent only the tip of the iceberg.
[65] The range of complaints above provides
an indication of patients' demands in relation to accessing their medical
records.
3.74 The Committee believes that legislation is necessary to provide
national laws which protect patients' rights of access to their health
records, and provides a statutory code which defines a schedule for the
legal destruction of records. [66]
Consumer issues
3.75 Today, it is more common to refer to patients as consumers of health
services. PIAC has observed changes in attitudes towards consumers:
The health care sector has seen a significant change in attitudes
to consumers over the past ten years, with greater professional accountability
and consumer autonomy. Part of the change has been the development of
a movement for consumer rights, which includes calls for consumers to
have a right of access to their health records. [67]
3.76 The Committee noted that arguments put for a legislative right to
access to medical records referred to patients' and consumers' rights.
The terms are no longer mutually exclusive and today are regarded almost
as one and the same. Clearly, patients are consumers of health services
and have certain expectations of levels of service and professional care.
This relationship is defined by trust in the expertise of the medical
practitioner, and by payment for a recognised service. In today's terminology,
using PIAC's definition, a consumer is `a person who receives health care
services, incorporating patients, clients and residents of nursing homes
and similar care facilities'. A provider is `any person, organisation
of institution providing health care services'. [68]
3.77 In recognition of the needs of consumer protection and advocacy
in the health service field, Health Care Complaints Commissioners provide
independent, communication bridges between consumers and health care providers.
In certain respects, Health Care Complaints Commissioners provide advice
and complaints resolution paralleling those provided elsewhere in the
marketplace by Consumer Affairs Offices. Commissioners become involved
in a range of issues concerning disputes between health care consumers
and health care providers, and complaints that are made about levels of
service. Health Complaints Commissioners refer commonly to health consumers,
health service users, clients and complainants.
3.78 In its recommendations on consumer participation, the PIR noted
that `health care consumers are now gaining representation in many policy
development areas of health care'. [69]
In view of this movement towards greater participation, PIR recommended
that the Commonwealth Government:
[m]onitor and encourage the implementation of measures to increase
participation of health care consumers in health service planning and
delivery ... With increased consumer participation and greater recognition
of patients' rights, the PIR expects a more open health system to result
in fewer adverse outcomes and complaints about health care treatment.
[70]
3.79 The medical profession has avoided the use of the term `consumer'
or `health care consumer', and refers only to `patients'. [71]
The doctor/patient relationship is one which the medical profession rightly
nurtures and the ideal doctor/patient relationship is one based upon trust,
cooperation and confidence. The AMA indicated in its submission that it
welcomed `greater patient involvement in their health care through seeking
and be[ing] provided with information regarding their care'. [72]
3.80 Senator Neal's speech made in support of the amendments to the Health
Insurance Amendment Bill No. 2 (1996) went to the heart of the matter.
She stated:
This bill aims to address the consumer and consumer group concern
about patient access to medical records.
Health management I believe should be the function of a mutual
relationship of trust between us: the patient and the medical worker,
each with equal access to information and input into the process. [73]
3.81 The AMA posed a rhetorical question in its submission, asking why
legislation is needed. The AMA suggested:
The trite answer is that legislation is needed to create a right
of patient access to medical records because none exists in common law.
Such legislation would be in line with the growing trend of consumer
autonomy in health care. It would also reflect the broader theme of
the patient's right to know everything about their health care, as well
as the right to know everything recorded about them in documents created,
held or stored by others. [74]
3.82 The Committee noted the AMA's understanding of the issue, although
it was concerned that the answer given was considered by the AMA to be
a `trite' one. [75] The AMA submitted
that it subscribed to the ethic of `cooperative access where the rights
of each party is respected'. [76] Respecting
the rights of patients in their dual role as consumers is fundamental
to the issue of access rights and, despite the fact that the AMA states
that it believes that `there does not appear to be a great ground swell
of patient dissatisfaction with the present system', [77]
there exists incontrovertible evidence provided by Health Care Complaints
Commissioners, that consumers' rights are at issue and should not be dismissed
by the AMA or any other organisation which deals with the public at large.
3.83 The Committee believes that access to medical records should be
a legislative right and not a privilege granted at the discretion of an
individual medical practitioner, or any other health care provider.
Recommendation 2: The Committee recommends that medical and other
health records that are the subject of legislation should be described
in the broadest possible way to include consultation notes, medical history,
test results, letters of referral, records of consultation between doctors
and other health providers, observations and opinions about the individual,
details of treatment, and any other material relevant to the individual
held in a health record, including electronic and video records.
Recommendation 3: The Committee recommends that the framing of
comprehensive national legislation enshrining the right of access to medical
and other health records in the public and private sectors commence without
delay.
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FOOTNOTES
[1] Dr Harry Nespolon, Director, Health Services
and General Practice, AMA, Transcript of Evidence, p.153 (AMA);
Submission No.34 (AMA).
[2] Definition, Amendment to the Health Insurance
Amendment Bill (No. 2) 1996.
[3] Submission No.20, p.1 (School of Public
Health, Curtin University of Technology).
[4] Whose Health Records: Attitudes to consumer
access to their health records and the need for law reform, Amanda
Cornwall, PIAC, October 1996, p.12.
[5] Submission No.17, p.2 (HCN).
[6] Submission No.18, p.1 (HIC) (Vic).
[7] Submission No.33, p.14 (ACTCHC).
[8] Submission No.16, p.2 (HIMAA).
[9] Submission No.34, p.8 (AMA).
[10] ibid.
[11] Submission No.24, p.2.
[12] Transcript of Evidence, p.113 (RCNA).
[13] ibid.
[14] Submission No.15, p.2 (School of Public
Health, La Trobe University). The definition is taken from Huffman, E.K.
1994, Health Information Management. Berwyn, IL, Physicians' Record
Co: 28.
[15] Transcript of Evidence, pp.170,
72 (Professor Deborah Saltman).
[16] Access to Health Record Act 1990
(UK), 1990 Chapter 23 1 (1). The health care professionals covered under
the UK legislation are set out in Paragraph 2.55 of this report.
[17] Health Information Privacy Code 1994
(NZ), Introduction, p.2.
[18] Submission No.25, p.3 (Federal Privacy
Commissioner, HREOC).
[19] Transcript of Evidence, p.183 (Federal
Privacy Commissioner, HREOC).
[20] ibid.
[21] Transcript of Evidence, p.135 (AMA).
[22] ibid.
[23] Supreme Court of NSW, Court of Appeal
[(1994)35 NSWLR 522], at 528.
[24] Submission No.34, p.5 (AMA).
[25] ibid, p.3.
[26] Transcript of Evidence, p.135 (AMA).
[27] Transcript of Evidence, p.137 (AMA).
[28] See, for example, Submission No.28, p.3
(CHF); Transcript of Evidence, p.5 (HIC Vic).
[29] Submission No.25, p.2 (Federal Privacy
Commissioner, HREOC).
[30] Transcript of Evidence, p.137 (AMA).
[31] Submission No.28, p.2 (CHF).
[32] Transcript of Evidence, p.138 (AMA).
The AMA cited figures taken from the HCCC (NSW) Annual Report 1995-1996,
pp.8, 18, and Health Services Commissioner (Victoria) Annual Report
1995-1996, p.17.
[33] Health Services Commissioner (Victoria)
Annual Report 1995-1996, Table 1, Issues in Complaints, July 1995-July
1996, p.17.
[34] ibid, p.22.
[35] ibid, p.16.
[36] Submission No.50, p.3 (HCCC) (NSW).
[37] See also Paragraph 2.22.
[38] Transcript of Evidence, p.95 (HIMAA).
[39] Whose Health Records: Attitudes to
consumer access to their health records and the need for law reform,
Amanda Cornwall, PIAC, October.1996, p.22.
[40] Dr Samuel Malcolmson, `Access by Patients
to the Clinical Record', Health Law in Canada, Vol 13, No. 2, Spring,
1992, p.160. (Dr Malcolmson, Psychiatrist-in-Chief and Clinical Director,
Queen Street Mental Health Centre, Toronto, Canada).
[41] Bouchard et al 1973, Stein et al 1979,
Golodetz et al, Wilmhurst 1984, references cited in Westbrook 188, and
Human Rights and Equal Opportunity Commission (HREOC) Mental Illness Inquiry
1993, in Dr Meg Montague, Consumer Access to Medical Records: A Discussion
Paper Arising from `Private Lives? An Initial Investigation of Privacy
and Disability Issues', May 1995, p.2.
[42] ibid, pp. 2-3.
[43] Submission No.54, p.9 (DHFS).
[44] Transcript of Evidence, p.30 (AAS).
[45] Transcript of Evidence, p.153 (RANZCP).
[46] The Power of Information: Health Providers,
Consumers and Treatment Records, HIC (Vic), May 1994, p.4.
[47] Transcript of Evidence, p.102 (AFAO);
Additional Information, Richard A. Elion, M.D., `The Physician-Patient
Relationship in AIDS Management', AIDS Patient Care, December,
1992, p.274.
[48] Transcript of Evidence, p.95 (HIMAA).
[49] The FOI application fee is A$30.00; under
the UK's Health Records Act, a fee of up to ten pounds is payable if the
record has not been added to within the past 40 days; in New Zealand a
common charge is NZ$30.00, but an agency must provide an estimate of the
charge before dealing with a request.
[50] `The cost of seeking information under
the FOI Act', Open government: a review of the federal Freedom of Information
Act 1982, ALRC Report No. 40, 1995, pp.183-5.
[51] Appendix 2: Guidelines for access to hospital
records in accordance with the Access to Health Records Act 1990,
p.19.
[52] New Zealand Health Information Privacy
Code 1994, Miscellaneous, Charges, p.36.
[53] Transcript of Evidence, p.32 (AAS).
[54] Submission No.34, p.11 (AMA); Transcript
of Evidence, pp.151-2 (AMA).
[55] Transcript of Evidence, p.87 (LISA).
[56] Health Records: Privacy and Access:
An ACT Government Position Paper, May 1997, p.19.
[57] Submission No.47, p.2 (Kingsford Legal
Centre).
[58] Submission No.6, p.2 (O'Rourke & Kelly).
[59] Submission No.45, p.1 (Mrs Lyn Brown).
[60] Submission No.53, p.3 (VHSC).
[61] Submission No.37, p.4 (Mrs Nola McAllum).
[62] Submission No.36, p.1 (Mrs R Green).
[63] Submission No.56, p.3 (Mr W M Billinghurst).
[64] Submission No.5, p.2 (Mrs F Devlin).
[65] The Committee also received a number of
telephone calls outlining individual cases of hardship caused by failure
to access medical records.
[66] The storage, retention and legal destruction
of records is discussed further in Chapter 4.
[67] Whose Health Records: Attitudes to
consumer access to their health records and the need for law reform,
Amanda Cornwall, PIAC, October1996, p. 4.
[68] ibid, p.7.
[69] Review of Professional Indemnity Arrangements
for Health Care Professionals: Compensation and Professional Indemnity
in Health Care: A Final Report, November 1995, p.207, (AGPS, 1996).
[70] ibid.
[71] See, for example, submissions received
from the AMA (Sub. No. 34), AAS (Sub. No. 22), RANZCP (Sub. No. 38), RACGP
(Sub. No. 14), Queensland Branch AMA (Sub. No. 32), Rural Doctors of Australia
Ltd (Sub. No. 41).
[72] Submission No.34, p.1 (AMA).
[73] Senator Neal, Senate Hansard, 13
December 1996, pp.6969-6970.
[74] Submission No.34, p.15 (AMA).
[75] The Macquarie Dictionary's definition
of the word `trite' is: `repeated too often', `hackneyed', `unoriginal'.
[76] Submission No.34, p.15 (AMA) (emphasis
in original).
[77] ibid.