Trials of opt-out arrangements for the newly named ‘My Health Record’ system will occur in the North Queensland and Nepean Blue Mountains Primary Health Network Areas. If these trials are successful, rules will be passed (instead of legislative changes) to implement the opt-out system nationally. These are some of the consequences of the Health Legislation Amendment (eHealth) Bill 2015 (Cth) (Bill) that has recently been passed1.
An independent evaluation of the trials is proposed to be carried out in 2016, and will inform the decision of whether to implement the opt-out system nationally.
The ‘My Health Record system’ (System) was implemented in July 2012 under its former name, the ‘Personally Controlled Electronic Health Record’ system. The System allows healthcare providers to upload key health information of a patient to a personal online health record, which can be shared between doctors, hospitals and other healthcare providers. Currently, individuals wanting to participate in the System are required to opt-in by registering themselves. This has resulted in only 1 in 10 Australians using the System.
A review of the System in December 2013 by the Department of Health (Review) made numerous recommendations, including to move the system to an opt-out model, and to improve the System usability and the clinical content of its records. The Bill is an outcome of the Review.
The trials of the opt-out system are intended to occur in 2016. As part of the trials, healthcare recipients will automatically have a My Health Record created for them. Their healthcare information will be uploaded to the System, and they will then have the ability to opt-out of the System. The Bill allows the national implementation of the System on an opt-out basis without the need to pass any further legislation, which has raised some concern over the informality of that process for such a significant action.
The Department of Health has said the decision to do so would be guided by an independent evaluation of the trials that is to be carried out in 2016, and which is to be considered by the Government in early 2017. The Minister is to consult with state and territory health ministers before making the necessary Rules to implement a national opt-out System.
The Healthcare Identifiers Act 2010 (Cth) will be amended to make clear how and why healthcare identifiers can be used and by whom. New criminal and civil penalties will be introduced for contravening prohibitions on the use or disclosure of a health identifier.
The Bill amends the Privacy Act 1988 (Cth) to clarify the definition of ‘health services’ (to ensure that health-related disability, palliative care and aged care services are considered health services) and amends the Copyright Act 1968 (Cth) to ensure the sharing and use of health records does not infringe any copyright that might subsist in such records.
The Personally Controlled Electronic Health Records Act 2012 (Cth) will be amended to provide for data breach reporting that will relate to the unauthorized collection, use and disclosure of health information, and events and circumstances that may have compromised the security or integrity of the My Health Record system. It will also be amended to abolish the Independent Advisory Council that is the current advisor to the System Operator. The proposed Australian Commission for eHealth will become the new System Operator and new advisory bodies will be established, and the Bill enables authorised representatives of children and vulnerable people to participate in the System by allowing authorised representatives to act on their behalf, but to do so, they must satisfy a new standard that requires them to give effect to the ‘will and preferences’ of the relevant person.