Unresolved Ethical Challenges for the Australian Personally Controlled Electronic Health Record (PCEHR) System: Key Informant Interview Findings

Background: A national Personally Controlled Electronic Health Record (PCEHR) system was made available across Australia in July 2012. While the technical, policy, and commercial aspects of the new Australian PCEHR system were examined thoroughly by the National E-Health Transition Authority in developing the new e-health record system, little attention was given to examining the related ethical implications of PCEHR advances. This article reports on ethical concerns about the new Australian electronic health record system identified by expert stakeholders. Methods: A qualitative study using semistructured interviews with a purposive sample of key informants from Melbourne, Canberra, Brisbane, and Sydney with expert knowledge about electronic health records was conducted. The 12 participants represented a range of health and other professionals, research, policy, and consumer/patient groups. Results: Major themes identified were the importance of privacy safeguards at implementation and in future PCEHR uses, the appropriate uses of PCEHR data in research, unique ethical challenges around children and adolescents with PCEHRs, conflicting stakeholder interests around record access and use, and cultural diversity and engagement. Conclusions: The technical, policy, and commercial aspects of the new Australian PCEHR system have been examined thoroughly to date. A greater focus is needed on the ethical implications of PCEHR advances. A continuing failure to address ethical issues in the national implementation and utilization of the PCEHR could limit its uptake and success in Australia, and is also not without risks to the future participants of such a system. © 2014 Copyright © Taylor & Francis Group, LLC