THE PROBLEM

It is unusual for a government with a majority in both houses of the Federal Parliament to have legislation temporarily abandoned after consideration by a standing committee of the Australian Senate. This chapter analyses policy in its development phase. Specifically, we examine the development of the Australian government’s proposed Access Card policy to the point where the enabling Bill reaches the upper house of the Australian Parliament, the first step in the legislative process.

The use of a public forum for discussion is an approach often used by governments to legitimise contentious new policies; we observe the tensions and conflicts that have become evident during this process and the ensuing problems that surround the Access Card policy. What you are about to read, therefore, describes ‘policy in progress’.

From a health perspective, our interest is the suggested use of the proposed Access Card as a repository for health information, and its relationship to an individual patient identifier (IPI). In its current embryonic form, the Access Card embodies a leading-edge technology with multiple functions and significant potential benefits for Australians. However, a policy to develop and implement impressive, state-of-the-art technology to reduce health and welfare benefits fraud is shifting and weaving because of different opinions embedded in societal values. Herein lies the problem: the ability of policy makers to respond to criticisms that the Access Card threatens cherished societal values. The tensions between the proposed Access Card and values is summarised in Table 11.1 (overleaf).

The primary stated purpose of the Access Card is not to hold personal health information; but rather, to be the central collection of individuals’ social and health benefits information. The card is designed to streamline the system, combat health and welfare benefits-related fraud, and militate against identity fraud, estimated at between $1 and $4 billion per annum (Department of Human Services [DHS] Office of the Access Card 2007a p 1). To this end, the Access Card is designed to hold a collection of the information contained in up to 17 existing, separate health and welfare benefits cards, including the Medicare and Centrelink cards (DHS Office of Access Card n.d., KPMG 2006). It is technically a ‘voluntary’ card; however, all who are eligible for, and who wish to access, a wide range of government services or to claim reimbursement for services under the national health insurance scheme will be required to have the card. Thus, it will be virtually a universal card held by almost all of the Australian population. It will not be compulsory for cardholders to carry or to show their card, other than for the stated health and welfare business purposes. The card is planned for introduction in 2010, with registration commencing in early 2008. A register, described as ‘a national population database’ (Australian Privacy Foundation 2007 p 4), will contain the government-related information unique to every cardholder. The government has assured Australians that the register will not be linked to taxation, health or medical records (DHS 2007). There is a proposal, however, for a document verification service to link key databases, including the states’ births, deaths and marriages registers, with the Commonwealth Department of Human Services, in an effort to prevent duplication and identity fraud.

The Access Card is being promoted by the Australian government as offering practical benefits to cardholders, viz: less time spent waiting in queues on health and welfare benefits-related business, reduced clutter in wallets because of the presence of one card in lieu of several, a standard form of identity across health and welfare agencies, the provision of additional security to protect against identity theft, and greater efficiency for users because a single card constitutes a ‘one-stop’ facility for amendments to demographic information such as change of address (DHS Office of Access Card 2007a).

THE ACCESS CARD POLICY DEVELOPMENTS

Key policy developments are summarised in Table 11.2 (overleaf). The concept of a smartcard for Australia’s health and welfare systems was raised by the Minister for Human Services in April 2005 (Hockey 2005 p 4). The state premiers were subsequently briefed by the Prime Minister (reported in Hockey 2006a p 3). In early 2006 the consultancy firm, KPMG, released a commissioned business case for the introduction of a national health and social services smartcard initiative, some sections of which were withheld from public release. This report mentioned only briefly that a computer chip in the card would store information in different zones with different levels of access and security, including optional organ donor status and personal health details (allergies, drug alert notifications and chronic diseases); the authors noted that this would in no way constitute a ‘clinical record’ (KPMG 2006 pp 37, 42, 45).

In April 2006 the Australian government formally announced the proposed Access Card (DHS Office of Access Card 2007b). Its implementation was embedded in national policy as the first objective in the Commonwealth Department of Human Services’ 2006–07 Strategic Plan (DHS 2006a). The Office of Access Card was established the following month (DHS Office of Access Card 2007b) and the Access Card Consumer and Privacy Taskforce created subsequently, to facilitate community consultation and input (DHS Access Card Consumer and Privacy Taskforce 2006 p 3). Project funding of $1.09 billion over 4 years was announced in the June (DHS Office of Access Card 2007b), with the Minister for Human Services predicting the project would entail ‘a massive logistical exercise’ (Hockey 2006a p 5). In November, the minister stated that the project had commenced in May; that is, prior to the release of discussion papers or provision for public debate (Hockey 2006c p 4).

From the outset, the primary purpose of the Access Card has been to operate as an administrative tool for fraud deterrence; concurrently, there have been persistent allusions in the media to its potential role as a national identification card; for example, in the wake of the London terrorist bombing (Prime Minister of Australia 2006). Then came a strong message of an early shift in policy: the government would most emphatically be open to extending the scope and role of the card by adding a personal medical information function, thereby creating a form of health record, albeit partial and fragmented:

Importantly for the medical profession, there will also be space available for cardholders to voluntarily include vital personal information that could be used in medical emergency such as next of kin, doctor details, allergies, drug alerts, chronic illnesses, organ donor status and childhood immunisation information.

(Hockey 2006b p 4)

Announcing this to doctors, at a national conference of the Australian Medical Association (AMA), was a positive tactic by the government. It deftly acknowledged the most visible stakeholders in health information systems; it made a definite shift in policy direction; it diverted attention, for a short while, from the national identity card issue by presenting the card as offering benefits to the cardholders’ health; and simultaneously it quietly condoned, through ‘function creep’, an important secondary function of the card. This facility was later extended to cardholders being ‘… able to add other information that you may wish to include’ (Hockey 2006c p 15). The minister stated that the key principle would be that ‘individuals will control the information that is on the card’ (Hockey 2006b p 7); this, he argued, was one of the ‘many reasons’ why the Access Card would not be a national identity card (Hockey 2006b p 7).

The Access Card was now well on its way: the government was appointing a project manager and tendering for legal, public relations and research services for the project; early decisions were planned on technological issues and there was to be a focus on selling the card to the public by explaining its ‘real’ benefits (Hockey 2006a p 11).

The taskforce released its initial discussion paper for public debate and consultation in June 2006. A second paper, of February 2007, reflected input from key stakeholders and others by responding to the concerns expressed in many submissions by representatives of civil rights, legal and privacy groups regarding the technical mechanisms for collecting and accessing personal medical and emergency information. The concept of a divided chip and the notion of a two-tier system for the cardholder’s personal health information were elaborated upon, and invitations made for further comment by interested parties.

The Human Services (Enhanced Service Delivery) Bill 2007, was introduced to the Australian Senate in February 2007. It was referred immediately to the Finance and Public Administration Standing Committee, no doubt partly in response to several high profile senators who called for an inquiry to address the concerns of organisations such as the AMA and the Australian Privacy Foundation. The Senate committee was briefed to inquire into the provisions surrounding the card’s scope and purpose, the information to be included in the card register and on the card’s chip and surface, and the range of offences for improper access to and use of the card (Senate 2007b). Extending the policy evaluation process effectively lengthened the period of public consultation.

Despite the emphasis on the positive health benefits of the Access Card’s extra health information, the notion has persisted of it being or becoming a national identity card. Widely reported disquiet amongst members of Parliament from all political parties has reflected these concerns (Australian Associated Press 2007).

The underpinning policy evolved to a proposal in February 2007 for three segments of information on the card (DHS Access Card Consumer and Privacy Taskforce 2007). The surface will show certain identifying information and a digital photograph. The card will hold a two-part electronic chip accessible only via an approved reader; the content of the first part will be determined and amended only by the Commonwealth. The second part, containing approximately 20kb of the 64kb chip, will be under the control of the card ‘owner’; two tiers are proposed for this part. The taskforce has suggested that the first tier should contain only information essential to facilitate emergency treatment in a crisis situation. Clearly, one immediate privacy concern is that it will be available to anybody with a reader, including those employed across the wider health and welfare sectors whose work responsibility does not include a legitimate interest in the cardholder’s health status or medical treatment. The taskforce recommends that the second tier be protected by a personal identification number (PIN), accessible only with the cardholder’s consent, and contain ‘other medical and health data’ (DHS Access Card Consumer and Privacy Taskforce 2007 p 5).

Population-based health identification of Australians

The early policy statements specified that the Access Card could only be used for identification purposes relating to health and welfare benefits business or, ostensibly, in a medical emergency situation. However, the government appeared to have broadened its approach by December 2006 when it indicated that cardholders may use the card for ‘any lawful purpose, including using it for identification purposes, if they choose’ (DHS 2006c p 2). This statement conflicts with an earlier comment by the then minister (Senator Ian Campbell) that the card could not legally be used for identification, other than for health and welfare benefits business (Campbell 2007).

The Australian Privacy Foundation has expressed concern that the ‘invisible functionality’ of the register underpinning the Access Card scheme will support ‘data-matching, profiling and the creation of virtual “dossiers” on all Australians’ (Australian Privacy Foundation 2007 p 4). In replacing the Medicare Card, the Access Card is designed to assist in the unique identification of individuals, consistent with Australia’s e-health priority initiatives (National Electronic Health Transition Authority [NEHTA], 2007a). In order to appreciate the connection between personal health information and a government smartcard, it is useful to explore the concept of the electronic health record (EHR) and its policy environment.

SHARING HEALTH INFORMATION

The electronic health information infrastructure

In recent years, there has been consistent national policy to support the introduction of electronic health records (EHRs) (refer to Table 11.3). One of the critical pre-requisites to the EHR infrastructure is a unique patient and/or client identifier.

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