THE government’s My Health record system gives the patient full control over who can access and add clinical information about them. This is far from the notion of physician ownership of health records declared in Australian case law.
Breen v Williams was a decision of the High Court about a patient’s right to access their medical records from a clinic. At that time, patients receiving private care did not have rights of access under the federal Privacy Act and the court determined that the professional could therefore refuse production. Historically, the right of access was only available to public patients under the Freedom of Information Act.
Now federal and state legislation affords all patients the rights to access, amend and define some uses of their health records, with some exceptions (see s6D(4)(b)). The physician can refuse access on the grounds that it may pose “a serious threat to the life, health or safety of any individual, or to public health or public safety”. Ordinarily, however, the physicians’ rights of possession and management of the record are not exclusive.
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The My Health system places patients in a position of control that is rarely seen in practice today. The government is currently trialling an opt-out model for My Health which would see the creation of an electronic record for every Australian patient.
Imagine if My Health had the 99% uptake of the health records system in Denmark. This would change how information is shared.
The patient would no longer need to make an appointment with their doctor to obtain their pathology results, for example. The information would be online for them to view, analyse, discuss and share with others.
While this level of patient participation will no doubt have benefits, it is also likely to raise concerns about medical liability if adverse events arise from patient management and self-diagnosis.
Eric Topol, cardiologist and editor-in-chief of Medscape, brought this debate front and centre in an article addressed to Medscape readers. Topol queried why doctors and hospitals legally own health records, and asked whether it was time for patients to control the access of doctors and hospitals.
“After all, the patient paid for the visit, procedure, lab test, scan, or hospitalization. It’s his or her body,” he wrote.
Essentially, patient ownership would tilt the balance of power, giving patients unrestricted management of their records. Topol’s paper was met with some interesting responses both in favour and against the idea of patient ownership.
In such a flipped system, how would the intellectual property rights of the professional stand? The patient does not usually contribute to their diagnosis and treatment and, therefore, cannot ordinarily claim copyright interests in their health record.
What we have seen with My Health is the introduction of copyright exceptions to enable non-copyright holders to use the records for the purpose of treating patients. This replaces the previous My Health method of licences being distributed by the copyright holder to intending users. A similar exception could be drafted to protect patients from copyright infringement arising from their control of the record.
My Health and privacy legislation are shifting the control paradigm from the doctor to the patient. The debate on My Health often centres on issues of privacy; however, arguments relating to ownership and control are just as worthy of debate and discussion among health professionals, lawyers and regulators.
Bianca Phillips is a Victorian lawyer and medical law academic, researching and publishing on the intersections between law, technology and medicine.