User:Cathy Davis 5IHC/sandbox

Australia - eHealth
On 1 July 2012 the Australian Government launched the Personally Controlled Electronic Health Record (PCEHR) (eHealth) system. The system is being rolled out in stages. Full implementation will incorporate an electronic summary prepared by nominated healthcare providers, and consumer entered notes. The summary will include information on the individual’s allergies, adverse reactions, medications, immunisations, diagnoses and treatments. The consumer notes will operate as a personal medical diary that only the individual can view and edit. The opt-in system, means people choose whether to register for the eHealth record or not.

Privacy - Governance
The Personally Controlled Electronic Health Records Act 2012 and Privacy Act 1988, govern how eHealth record information will be managed and protected. The PCEHR System Operator abides by the Information Privacy Principles in the Privacy Act 1988 (Commonwealth), and any applicable State or Territory privacy laws. A Privacy Statement sets out the application of personal information collection by the System Operator. The Statement includes explanation of the types of personal information collected, what the information is used for, and how the information is stored. The statement covers measures in place to protect personal information from misuse, loss, unauthorised access, modification and disclosure.

Privacy - Security measures
Security measures include audit trails, so that patients can see who has accessed their medical record and when, and the use of encryption, secure logins and passwords. Patient records are identified using an Individual Health Identifier (IHI) assigned by Medicare as IHI service provider.

Privacy and confidentiality issues
A 2012 nationwide survey assessed privacy concerns on patients’ health care decisions, which could impact on patient care. Results found 49.1% of Australian patients stated they have withheld or would withhold information from their health care provider based on privacy concerns.

How does consent impact privacy?

One concern is that personal control of the eHealth record via consent, does not guarantee privacy is protected. It is argued that a narrow definition, ‘permission’ or ‘agreement’, does not provide protection for privacy and is not well represented in Australian legislation. The PCEHR allows clinicians to assume consent by consumer participation in the system; however, the needs of the consumer may not be met. Critics argue that the broader definition of 'informed consent' is required, as it encompasses the provision of relevant information by the healthcare practitioner, and understanding of that information by the patient.

Is it legitimate to use personal information for public purposes?

Data from the PCEHR is to be predominantly used in patient healthcare, but other uses are possible, for policy, research, audit and public health purposes. The concern is that in the case of research, what is allowed goes beyond existing privacy legislation.

What are ‘illegitimate’ uses of health information?

The involvement of pharmaceutical companies is viewed as potentially problematic. If they are perceived by the public to be more concerned with profit than public health, public acceptance of their use of PCEHRs could be challenged. Also perceived as problematic, is the potential for parties other than health care practitioners, such as insurance companies, employers, police or the government, to use information in a way which could result in discrimination or disadvantage.

What are the potential implications of unwanted disclosure of patient information?

Information ‘leakage’ is seen as having the potential to discourage both patient and clinician from participating in the system. Critics argue the PCEHR initiative can only work, if a safe, effective continuum of care within a trusting patient/clinician relationship is established. If patients lose trust in the confidentiality of their eHealth information, they may withhold sensitive information from their health care providers. Clinicians may be reluctant to participate in a system where they are uncertain about the completeness of the information.

Are there sufficient safeguards for the protection of patient information?

Security experts have questioned the registration process, where those registering only have to provide a Medicare card number, and names and birth dates of family members to verify their identity. Concerns have also been raised by some stakeholders, about the inherent complexities of the limited access features. They warn that access to PCEHR record content, may involve transfer of information to a local system, where PCEHR access controls would no longer apply.