eHealth records

6.62 The following section discusses the PCEHR Act, which contains provisions dealing with decision-making concerning the collection, use and disclosure of personally controlled electronic health records—referred to as ‘eHealth records’.

6.63 An eHealth record is an electronic summary of a person’s health records, which the individual and their healthcare providers can access online when needed. The eHealth record system was rolled out nationally in July 2012, allowing people seeking health care in Australia to register for an eHealth record. Healthcare Provider Organisations can also register to participate in the eHealth record system, and authorise their healthcare providers to access the eHealth record system.

6.64 As the system develops over time, having an eHealth record will give healthcare providers access to a summary of key health information, as long as the person gives initial consent when confirming access settings for the eHealth record. This will include information such as medications, hospital discharge summaries, allergies and immunisations.[51]

Individual decision-making and eHealth records

6.65 Under the legislative framework for eHealth, there are protections against the mishandling of information.[52] Individuals can control their own eHealth record by choosing to restrict which healthcare providers can access it and what information is included through exercising ‘access controls’.[53] Unauthorised collection, use or disclosure of eHealth record information is both a contravention of the PECHR Act and an interference with privacy under the Privacy Act 1988 (Cth).[54]

6.66 The PCEHR Act contains detailed schemes for ‘nominated representatives’ and ‘authorised representatives’. In the terminology used by the ALRC, the former are analogous to ‘supporters’ and the latter to ‘representatives’.

‘Nominated representatives’

6.67 The nominated representative provisions are intended to support the involvement of people other than healthcare professionals in assisting consumers in managing their healthcare. Nominated representatives may be family members, carers, neighbours or any other person nominated by a consumer.[55]

6.68 For a person to be a nominated representative, there must be an agreement between the consumer and the proposed nominated representative. This agreement does not have to be in writing. The consumer must also notify the System Operator that the other person is her or his nominated representative.[56]

6.69 Consumers remain able to access and control their eHealth record themselves, and access by a nominated representative is subject to any access controls set by the consumer.

6.70 For example, in some cases a nominated representative may have ‘read-only’ access to a consumer’s eHealth record. In other cases, a consumer may allow a nominated representative to do anything the consumer can do, including setting access controls, and granting access to healthcare provider organisations.

This flexibility in setting access controls is designed to take into account the many circumstances where a person may not be able to, or may not wish to, manage their own [eHealth record] but where they do not have a formal legally recognised representative to act on their behalf.[57]

6.71 A nominated representative must always act in the ‘best interests’ of the consumer, subject to the consumer’s directions.[58]

‘Authorised representatives’

6.72 People who may have impaired decision-making ability are able to have an eHealth record. To facilitate this, an authorised representative is able to register a consumer for an eHealth record and manage the access controls on behalf of the consumer.

6.73 A person may be an authorised representative of a person over 18 years old if the System Operator is satisfied that a consumer is not capable of making decisions for themselves, and that another person is authorised by an Australian law, or by a decision of an Australian court or tribunal, to act on behalf of the consumer.[59]

6.74 If there is no such person, the System Operator may appoint someone else if satisfied that person an appropriate person to be the authorised representative.[60] This provision is said to allow the System Operator, in making appointments, to ‘take into account a range of other circumstances for people without capacity, or with only limited capacity’.[61]

6.75 For the purposes of the PCEHR Act and the eHealth system, an authorised representative is treated as if she or he were the consumer. That is, the authorised representative can do anything authorised or required of the consumer, and anything done by an authorised representative in relation to the system is taken as if it were done by the consumer.[62]

6.76 An authorised representative must always act in the best interests of the consumer, having regard to any directions from the consumer expressed when they had capacity to act on their own behalf.[63] A consumer may have more than one authorised representative.[64]

The Commonwealth model and eHealth records

Proposal 6–3 The Personally Controlled Electronic Health Records Act 2012 (Cth) should be amended to include supporter and representative provisions consistent with the Commonwealth decision-making model.

6.77 The existing scheme for authorised and nominated representatives contained in the PCEHR Act is detailed and tailored to the operation of the voluntary national system for the provision of access to electronic health information.

6.78 The scheme is designed, among other things, to ensure that people who have impaired decision-making ability are able to have an eHealth record; and to enable people to share their health information with those who need it. For example, an older person may want their son or daughter to be able to view key health information, such as currently prescribed medications and test results, in order to provide care and assistance to them.

6.79 The ALRC does not intend to prescribe a comprehensive new decision-making scheme for the PCEHR Act. Individual decision-making under the PCEHR Act is relatively limited—being confined to decisions about the collection, use and disclosure of health information—as compared to, for example, decision-making under the Aged Care Act, which often involves significant decisions about the provision of residential and home care services and the entering of contractual arrangements.

6.80 However, the existing PCEHR Act provisions concerning nominated and authorised representatives should be reviewed and amended in the light of the decision-making principles and the Commonwealth decision-making model.

6.81 Broadly, nominated representatives under the PCEHR Act are analogous to ‘supporters’ in the Commonwealth decision-making model. They are nominated by the person concerned, and are subject to directions by the consumer, who may also continue to make decisions under the PCEHR Act.

6.82 Apart from adopting consistent terminology, possible changes to these nominated representatives provisions might include providing that, in making decisions, supporters have obligations to:

  • consider the will, preferences and rights of the person represented (rather than the current best interests test);

  • consult with existing appointees, family members, carers and other significant people;

  • perform the role diligently and in good faith.

6.83 Authorised representatives provide substitute decision-making concerning eHealth records and, therefore, perform a role analogous to that of ‘representatives’ in the proposed Commonwealth supporter and nominee model. Changes to these PCEHR Act provisions may include incorporating the ‘will, preferences and rights’ approach to decision making; the proposed guidelines for determining decision-making ability; and the proposed factors for determining whether a person or organisation is suitable for appointment.

6.84 The NSW Council for Intellectual Disability (NSWCID) observed that

so far as possible, people with intellectual disability should be supported to make their own decisions in relation to the creation of and access to their e-health record. Where maximum support proves inadequate, there needs to be a system of authorised representatives.[65]

6.85 The Council cautioned that if it were ‘unduly time-consuming or complex to create an authorised representative for an individual, the strong likelihood would be that families and doctors would be deterred from taking this course and the person with disability would be denied the considerable advantages to their health of having an e-health record’.[66]

6.86 There may be arguments that no change to existing provisions of the PCEHR Act is necessary because the system already strikes a balance between safeguards for the privacy and related rights of the person and allows representatives to be appointed without undue administrative complexity.

6.87 In the ALRC’s view, it is important to encourage the implementation of supported decision-making in this area of Commonwealth responsibility. There is, however, no intention to create unnecessary formality. Decisions under the PCEHR Act involve only the handling of personal information. Therefore, there may be a case for supporter and representative provisions that are more minimal than those proposed in the Commonwealth decision-making model.