REPORT ON ACCESS TO MEDICAL RECORDS
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CHAPTER 7 - THE NEED FOR CHANGE
7.1 The Committee has noted the Prime Minister's recent statement relating
to the implementation of a privacy regime for the private sector and the
Commonwealth's intention not to implement privacy legislation. This decision
may place temporary impediments in the ways of those seeking to find ways
of ensuring privacy, confidentiality and access rights across the entire
private sector.
7.2 The Committee found that there are many in the professional and broader
community who seek, and will continue to seek, ways of ensuring the right
of access to medical and health records in the private health sector.
The notion of ownership of another's personal health information in the
private health sector, but not in the public, is under challenge from
a number of quarters. The challenge comes from those who regard this anomaly
as both discriminatory and possibly detrimental to better health outcomes.
7.3 The High Court's decision in the Breen v Williams case placed the
final onus upon the Parliament to provide a legislative answer to the
question of access to medical records. While accepting the notion of custodianship,
the Committee regards it as unacceptable that access to personal health
information may be denied, with legal sanction, in the private health
sector.
7.4 Although the Committee has heard that numbers of medical practitioners
regard personal health records and notations as aide-memoires, it believes
that personal health records generally are, and should be, more than memory-joggers.
Evidence to the Committee has indicated that record keeping has noticeably
improved when access to medical and health records has been guaranteed;
this is one highly positive outcome of Freedom of Information legislation
covering public sector records. When access to medical and health records
is provided without delay or impediment, the Committee heard that communication
between doctors and patients is likely to improve; this, in some cases,
leads to better health outcomes.
7.5 Modern medical practice encourages the establishment of a mutual
partnership between patient and provider in promoting health. This necessarily
involves a continuous updating of information in medical and health records,
and promotes better and clearer communication between medical practitioners
and health care providers and their patients. The Committee considers
that modern medical practice must accept that cultural change is required
in addition to legal change. While many medical practitioners may wish
to hold fast to the concept of ownership of `their' records, they must
understand that community attitudes and expectations have changed.
7.6 Patients' rights have been outlined in public hospital health charters
and, in New South Wales, in legislation covering private hospitals, day
procedure centres and nursing homes. Health service providers are now
much more aware of consumer issues and consumer demands. Overcoming professional
resistance to change in relation to an access to medical records regime
will require education and encouragement. This should be underpinned by
a workable legislative framework devised in consultation with all stakeholders.
The Committee has found that legislative access regimes do work successfully,
particularly those in operation in the United Kingdom and New Zealand.
7.7 Fears that increased access to medical and health records would increase
costs and increase litigation have been largely allayed in the UK and
New Zealand experience, since no appreciable increases can be shown. Medical
practitioners in these health systems have not been overwhelmed with applications
for access, and litigation has been confined to cases which would have
moved into the courts under any circumstances. `Fishing expeditions' by
patients and their lawyers trawling records for instances of misdiagnosis
or malpractice, have not eventuated. It is argued that the legislative
regimes have removed one area of uncertainty for both patients and medical
practitioners.
7.8 A legislated right of access to information contained in personal
health files in the private health sector will not be `the end of the
world as we know it'. The Chairman, NSW Privacy Committee, related his
experience in dealing with access to medical record matters, and his past
experience with the introduction of Freedom of Information legislation:
I have seen a lot of opposition to patient access, and it reminds
me entirely of my first experience on a Senate Committee when we did
the freedom of information inquiry in which every senior public servant
in Australia was wheeled out to tell us that freedom of information
as the end of civilisation as we knew it, and that, if people had access
to government information, all sorts of things could not possibly be
done and the Public Service would grind to a creaking halt. Senate committees
will be familiar with this “end of the world as we know it”
type of opposition to anything that empowers individuals against powerful
people or powerful organisations such as the medical profession. [1]
7.9 The Committee concluded that there was overwhelming evidence of public
support for access to medical records to be ensured by a national legislative
regime. It is unlikely, if the New Zealand and United Kingdom experience
is any guide, that vast numbers of patients will be marching into surgeries
demanding access to their records. Some will, and it is right and proper
that individuals should gain access to their personal health information.
What is hoped for is that all requests will be complied with. In the Committee's
view, it is essential that when individuals seek access to their medical
or health records, they will not be unduly hampered and, in all but `exemption'
cases, they will be assisted positively by all health service providers.
Conclusion
7.10 In these days, access to information is regarded as essential for
society to function efficiently, to ensure better communication and understanding.
In the past decade or so, Australians have been given the legal right
of access to information about themselves when it is contained in government
and public sector files. Under Freedom of Information legislation and
under Privacy legislation, individuals have been granted the right to
obtain information and the right to privacy. This inquiry into access
to medical records has demonstrated inequalities in an individual's right
to obtain personal health information from providers in the private health
sector, but it has also exposed other related shortcomings.
7.11 The Committee took evidence from a wide variety of individuals and
organisations with an interest in these issues as well as the means and
practicalities involved in ensuring access to medical records. Included
were professional organisations representing the interests of general
medical practitioners, medical and psychiatric specialists, and the nursing
profession. The Committee heard from health consumer advocates, public
interest advocates, health information managers, professional indemnity
insurers, chronic illness groups, private hospitals, and Health Complaints
Commissioners. The Committee received evidence from the Federal Privacy
Commissioner, the NSW Privacy Committee, the Australian Law Reform Commission,
the Department of Health and Family Services, and the Health Insurance
Commission.
7.12 The Committee received evidence from individuals who have experienced
distress from being denied access to their personal health information
under a number of circumstances. The fact that ownership of medical records
in the private health sector has been re-confirmed in common law by the
High Court has provided no comfort to those who seek their health information.
The common law provides the major obstacle and the most significant reason
why individuals have no legal rights of access to their own personal health
information. Evidence also presented before the Committee indicated that
individuals may not have access to their personal health information in
the private sector for other closely related reasons, such as the premature
or ad hoc destruction of records.
7.13 What has emerged from this inquiry is that there is no uniform legislation
or guidelines which relate to standards for keeping health records, transferring
health records, or for destroying health records in the public and private
health sector. Public and private health institutions have internal standards,
and many are working to produce conformity of standards in record keeping
procedures, but efforts are often inconsistent and piecemeal and, such
standards as do exist, vary in States and Territories.
7.14 The Committee was advised that medical practitioners and other health
service providers take guidance from their professional associations,
and these professional associations in turn must rely upon constant development
of codes of practice, internal professional ethics, and the sum of collective
experience. The Committee regards it as essential that agreement is reached
on standardised record-keeping procedures for all health records.
7.15 The medical and the allied health professions, and others, are now
faced with the challenges presented by the advent of `telemedicine' and
electronic record keeping. No longer are records primarily handwritten
on cards and files and safely stored in filing cabinets in individual
surgeries. Changes in the ways records are made, controlled, and kept,
highlight the even greater need for privacy. Ironically, while electronic
record keeping may make the transfer of health information easier, it
may also make access for individuals to their health records even more
difficult.
7.16 While the Committee acknowledges health professionals' efforts to
develop codes of practice which seek to encourage health professionals
to demonstrate cooperative attitudes in granting access to medical and
health records, the Committee believes that national legislation is required
urgently. This should include extending privacy legislation into the private
health sector and guarantee individuals' legitimate access to their personal
health records on request. The Commonwealth government should take the
initiative and provide a workable legislative framework for professionals
and consumers to work with and abide by to ensure access to medical records.
Recommendation 17: The Committee recommends that the Commonwealth
initiates immediate discussions between all stakeholders in the States
and Territories to enable the drafting and passage of national legislation
to ensure access to medical records for all individuals across the public
and private health sector.
Senator Mark Bishop
Chairman
June 1997
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FOOTNOTES
[1] Transcript of Evidence, p.44 (Chairman,
NSW Privacy Committee).