Media release

AMA calls for major reform to protect patient data

The Australian Medical Association (AMA) has called for a national debate on data governance in the health sector and stronger legislation to protect confidential patient health records.

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In a new position statement, the AMA says the use of data must be for the public good and not present harm to individuals, the healthcare providers or the healthcare system.

AMA President Professor Stephen Robson said appropriate use of health data can enhance the provision of care for patients, improve health outcomes, increase equitable and individualised care, while minimising duplication and gaps in care.

“Effective data governance will ensure the appropriate collection and use of data and protect patient data,” Professor Robson said.

“The disclosure and linkage of health data must be limited to initiatives that aim to improve the health and health care of patients,” Professor Robson said.

Professor Robson said the AMA considers use of patient health data to increase the profits of privately owned entities, that are custodians of patient data, unethical and is strongly opposed to this.

“It’s clear we need a national discussion on health data governance and ownership of data in the digital health systems. The AMA believes Australia should look at the General Data Protection Regulation (GDPR) legislation in Europe and the UK, which differentiates between data owners, data controllers and data processors.

“With the rapid expansion of large international private technology companies into the healthcare space, the AMA wants to see adequate regulation to ensure patient privacy is paramount, and patient ownership of data is protected and enshrined in legislation.

“The AMA does not support sharing health information (particularly MBS and PBS data) with private health funds outside the existing statutory schemes. Patients’ medical information must be protected to maintain the clinical independence of their healthcare pathway.

Professor Robson said it is the AMA’s position that patients are the owners of their health data, and that healthcare providers, private health insurance providers and clinical software developers/operators are only custodians of the patient data.

The AMA position statement also supports stronger measures to protect sensitive patient data.

“Not only does the government need to make it more difficult for confidentiality breaches to occur it needs to stop in its tracks any moves to monetise patient health data.

“Health data custodians — including doctors, other healthcare providers, private health insurers and clinical software developers/operators, should be subject to strong mechanisms to prevent security breaches, such as data hacking, or misuse of patient data,” he said.

Read the AMA’s Position Statement

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