The legal and ethical implications of electronic patient health records and e-health on Australian privacy and confidentiality law

Abstract

This thesis addresses the legal and ethical issues posed by introduction of electronic patient health records. Against the background of an analysis of broader conceptual and theoretical understandings of development of electronic patient health records (EPR) and e-health regimes in Australia and comparable countries over the last few decades, the thesis critically examines the extent to which its implementation is consistent with established legal and ethical principles underpinning traditional health assumptions and practices. To this end the thesis explores the evolution and progress of modern health, technology, law and governance issues in e-health, identifying critical features of emerging EPR and e-health systems such as broad innovative industry technology involvement, and potentially problematic practices such as personal information ‘collection’, ‘sharing’ and ‘networking’ activities. The thesis contends that while adopting technology such as e-health comports with modern day progress, the transformational power of technology on society and individual lives has the potential to impose significant human costs for health consumers and everyday life. Through an analysis of the new electronic regime the thesis reveals how Australian Governments, healthcare providers, consumers and other stakeholders interpret and deal with advances in personal healthcare information changes in the new electronic system. The healthcare privacy model advanced in the thesis, in conjunction with an analysis grounded in theories of deliberative democracy, provides the foundation for the thesis argument that the legal, ethical and democratic challenges posed to privacy and participation interests by implementation of e-health policies can best be alleviated in Australia through further structural reforms beyond those recently proposed by a federal review. The thesis contends that an independent ‘Council’, with broad powers to consult and engage the public is an important part of the solution to the political and economic problems identified by the thesis analysis showing that individual privacy protection in healthcare is threatened and that earlier privacy protection mechanisms may prove inadequate in the emerging global information era.