Members of the Parliamentary Joint Committee on Human Rights (PJCHR) have been unable to agree on whether some measures contained in legislation revamping Australia’s national eHealth record were justified.
A report issued in October by committee queried a number of aspects of the Health Legislation Amendment (eHealth) Bill 2015.
In its latest report, tabled yesterday in parliament, the committee considered responses from the health minister, Sussan Ley.
The eHealth bill has already been passed unamended by both houses of parliament.
The bill was endorsed by a report from the Senate's Community Affairs Legislation Committee, although during that committee's inquiry some privacy advocates indicated their opposition to the legislation.
The legislation implements recommendations from the 2013 review of the Personally Controlled Electronic Health Record (PCEHR), including renaming the record to 'My Health Record'.
The legislation allows the health minister to apply opt-out participation to particular areas.
The changes are intended to enable trials of approaches intended to boost participation in the system, as well as lay the basis for a potential wholesale shift to opt-out.
Trials of an opt-out approach to signups for the national eHealth record will be held in parts of Queensland and NSW, Ley has revealed.
"One of the great criticisms of Labor's model that was that it could not be used unless a patient signed up, rather than an all-inclusive system that simply gives those consumers who do not want their medical history made available the option to opt-out," Ley said in remarks prepared for a National Press Club address in October.
The trials will begin early next year and involve around 1 million people.
Although Ley’s responses to queries from the PJCHR were accepted by some committee members, in the view of others the legislation to enable opt-out is incompatible with the right to privacy.
Those members of the committee recommended a number of aspects of the legislation be amended:
• to set out the detail of how and when a health care recipient will be notified that their records will uploaded onto the My Health Records system;
• to require that healthcare recipients be given a reasonable amount of time to decide whether to opt-out of the My Health Records system;
• to provide that healthcare recipients are able erase their record from the register at any time;
• to require that if the minister applies the opt-out model to all healthcare recipients in Australia, the minister must consider the privacy implications of this decision and be satisfied that healthcare recipients in the trials were given an appropriate and informed opportunity to opt-out.
Some committee members also raised concerns over the automatic inclusion of children’s health records on the My Health Record register and also argued that the approach in the legislation to people with a disability is unjustified, the report states.
“[The] current law provides that whenever the Systems Operator [of the My Health Record system] is satisfied that a healthcare recipient 'is not capable of making decisions for himself or herself' the Systems Operator will deem whomever they are satisfied is an appropriate person to be the healthcare recipient's authorised representative,” the report states.
“Once that representative is stated to be acting for a healthcare recipient, the healthcare recipient is not entitled to have any role in managing their health records.”
Although the approach to people with a disability was backed by some members of the committee, other members recommended that “in order to avoid an unjustifiable limitation on the rights of persons with disabilities, that the legislation be amended to ensure that persons with disabilities are accorded full legal capacity in relation to the My Health Record system and the health records of persons with disabilities are not subject to automatic inclusion on the My Health Record.”