The Privacy-Related Challenges Facing Medical Research in an Era of Big Data Analytics: A Critical Analysis of Australian Legal and Regulatory Frameworks.

This article examines the Australian approach to handling the complex privacy issues raised by Big Data analytics in health research. It analyses the privacy challenges posed by Big Data analytics and considers the privacy-related issues pertaining to the secondary use of health data for research purposes. It also examines the Australian regulatory regimes governing secondary uses of health data for research purposes contained in privacy legislation and human research guidelines, and includes a critique of a new criminal offence for re-identification of de-identified datasets proposed by the Australian Government. The article concludes with suggestions for a reform process that enables responsible research into big health data while properly addressing the protection of privacy and confidentiality of such data.

The CDM-Net Project: The Development, Implementation and Evaluation of a Broadband-Based Network for Managing Chronic Disease.

Background. In Australia most chronic disease management is funded by Medicare Australia through General Practitioner Management Plans (GPMPs) and Team Care Arrangements (TCAs). Identified barriers may be reduced effectively using a broadband-based network known as the Chronic Disease Management Service (CDMS). Aims. To measure the uptake and adherence to CDMS, test CDMS, and assess the adherence of health providers and patients to GPMPs and TCAs generated through CDMS. Methods. A single cohort before and after study. Results. GPMPs and TCAs increased. There was no change to prescribed medicines or psychological quality of life. Attendance at allied health professionals increased, but decreased at pharmacies. Overall satisfaction with CDMS was high among GPs, allied health professionals, and patients. Conclusion. This study demonstrates proof of concept, but replication or continuation of the study is desirable to enable the impact of CDMS on diabetes outcomes to be determined.

Electronic care plans and medicolegal liability.

BACKGROUND: Government policy encourages the use of care plans in general practice, and developments in information technology have the potential to facilitate their use via a shared electronic care plan. Sharing a comprehensive set of patient data raises privacy issues and questions about the nature and extent of potential liability. METHODS: A round table discussion was held with participants purposively selected for expertise in their fields. RESULTS: Consensus stressed the privacy dangers inherent in the creation of a shared electronic care plan accessible by multiple treating professionals and a private sector intermediary information technology provider, and the difficulties in ensuring appropriate informed consent is provided by patients. DISCUSSION: As the use of shared electronic care plans increases in Australia, new legal and ethical issues may emerge which need to be understood and addressed if general practitioners and other healthcare team members are to be able to participate with confidence.

HealthConnect and privacy: a policy conundrum.

A shared electronic health record is intrinsically privacy-invasive because it creates a comprehensive record for information-sharing. The author explains the significance of information privacy and why it is that health information warrants special protection. She also provides an overview of the existing regulatory framework and an evaluation of suggested options and proposals for addressing privacy-related issues. Her analysis of suggested consent models suggests that they ultimately involve a trade-off between privacy and the broader benefits promised by HealthConnect and that obtaining the right balance is essential if HealthConnect is to achieve optimal health outcomes.

Health Privacy: The Draft Australian National Health Privacy Code and the Shared Longitudinal Electronic Health Record.

An explicit distinction between shared electronic health records and those at the point of care is required when referring to electronic health records. The former raises particular privacy issues discussed in this paper in relation to Health Connect and the Draft Australian National Health Privacy Code. In addition to a number of revisions to the code, the analysis recommends that related legislation such as archival and freedom of information law should be reconciled as much as possible within the code, so that a long-term view of the uses, retention and preservation of the longitudinal electronic health record is balanced with privacy, confidentiality and public interest.

Disclosing health information breaches of confidence, privacy and the notion of the "treating team".

The authors utilise cases collected during a randomised population survey to illustrate some of the legal and policy issues concerning routine transfers of information between treating practitioners. Their analysis suggests that implied consent for many routine uses of health information should not be assumed. An important part of consent to health information disclosure is the patients' ability to tailor its scope and content. This requires that they should be provided with additional information. Introducing the measures advised into the clinical setting would bring health information-gathering practices closer to compliance with the collection principles contained in Australian information privacy legislation.

Patients rarely detect breaches of confidence.

OBJECTIVE: To measure the prevalence of patient reported breaches of confidence emanating from health services in South Australia. METHODS: A community household survey with follow up telephone interviews of those reporting unauthorised disclosures. Recruitment interviews were conducted during October and November 2001 with 3037 South Australian residents over 15 years of age. South Australian households were selected randomly within a representative selection of census collection districts. Follow up telephone interviews were conducted with 18 respondents who reported unauthorised information releases in the twelve months prior to the initial survey. RESULTS: The one year prevalence of breaches of confidence reported by patients was 0.23 +/- 0.17% (1.96 x SE). This prevalence was significantly lower than a previously published estimate (Mulligan, 2001) of 1.1 +/- 0.4% (difference between proportions p= 0.003, z= 4.415) which relied upon reports of information disclosed without the patients permission as a proxy for breaches of confidence. An incidental finding was that 0.20+/- 0.16% (1.96x SE) of respondents reported exchanges of information amongst members of treating teams which had not been authorised by the patient. CONCLUSION: True breaches of confidence arising from health care interactions are rarely detected by patients. Ordinary information sharing within treating teams may be a more important source of misunderstandings between patients and health care providers. This issue can be addressed at the point of care by informing patients what will be done with their health information and who may later gain access to it.