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A National, Personally Controlled Health Record
Australia Getting Privacy Right?

Richard Day
Professor of Clinical Pharmacology
University of New South Wales


personally controlled health record that summarizes an individual’s health issues, medical interventions, investigations, medicines, allergies and adverse reactions and is legitimately accessible to healthcare providers anywhere has immense appeal.

Such a record is highly likely to reduce the duplication of already prescribed medicines, prescriptions written despite previous allergic or adverse reactions, duplication of costly and sometimes risky investigations, and the significant time spent in attempting to access these data by practitioners as their patients navigate through various healthcare “silos.”

Significant personal and societal health and financial benefits are expected to accrue from making critical details of an individual patient’s medical history in a patient-controlled electronic health record easily available. Australia is very well suited to a personal medical record for all citizens given its national health system that includes a national primary healthcare network supported by Medicare, a national Pharmaceutical Benefits Scheme, and State-based public hospital systems.

In its first iteration, introduced in 2012, the personal medical record required citizens to “opt in.” This required the Government and the medical profession in particular to explain the benefits and risks to patients. This approach, however, has been slow, with only 6 out of our 25 million citizens “opting in” by mid-2018. The “fix” to this slow uptake was to switch to an “opt out” model now called “My Health Record” (MHR). Citizens were given three months to either “opt out” or a personal MHR would be constructed for them; the cut-off date for “opting out” was October 15, 2018.

As October 15 approached, significant backlash to the MHR emerged from privacy concerns; in particular, possible access to records by government agencies. Critics also claimed that “opt out” was a “lazy” solution introduced by the Government because it had failed to convince the public of the merits of a personal MHR. There was mounting criticism from opposition parties in the Federal Government, the press, the community and professional associations.

A significant concession was introduced in late 2018 when the Federal Parliament dealt with security and privacy concerns by passing a new law, The My Health Record (Strengthening Privacy) Bill 2018. Its key point was restricting access to an individual’s record not only by government agencies but also by insurers, employers, and welfare organizations. In particular, it is now a requirement that a warrant or judicial order is obtained before a law enforcement organization could gain such access; this will only occur in severely limited circumstances.

Although citizens only had until January 31, 2019, to “opt-out” (not enough time, according to many commentators), they now can delete their personal health record at any time, a facility not available in the previous model. The Consumers Health Forum (CHF), the influential national umbrella consumer organization that has always supported the personal electronic health record (MHR) but acknowledged the concerns raised, now endorses the changes that deal with privacy and security. CHF CEP Ms. Leanne Wells was pleased that the particular benefits of MHR would be now quickly available to “people with chronic and complex conditions who rely on an accurate record of their medications, diagnostic tests and treatments.” Also, it is known that 40-80% of medical information provided by healthcare practitioners is not remembered by their patients. With access to their own information, patients will most likely improve adherence to their medication and treatment plans. However, others remained concerned that “opting out” requires knowledge that a personal MHR exists, and assumes that patients can access and manage their MHR online and that they can follow the instructions to do so.

Medicines Australia, the umbrella body for the prescription medicines industry in Australia, has long supported the inclusion of a patient’s medication records as mandatory in eHealth profiles such as the MHR. The nation’s preeminent medical body, The Australian Medical Association, also a strong supporter of the MHR, has been a strident advocate for and supporter of steps to better protect the confidentiality of MHR information and welcomed the amendments.

There is cautious optimism for this new Opt Out Model and its other anticipated benefits, such as the availability of patient-nominated “advanced care planning documents” that can be included in the MHR, which will increase the likelihood that treatment during emergencies will align with an individual’s wishes. These documents provide the patient’s wishes regarding their future medical treatment, should that patient be in a situation where they cannot express their wishes at that future time due to a stroke or serious illness, to healthcare personnel and facilities. The hope is that the MHR will deliver benefits for individuals, health practitioners and the health system, that privacy will be protected, and that the evolution necessary to improve the effectiveness of the MHR will continue.