Ethical questions must be considered for electronic health records

National electronic health record initiatives are in progress in many countries around the world but the debate about the ethical issues and how they are to be addressed remains overshadowed by other issues. The discourse to which all others are answerable is a technical discourse, even where matters of privacy and consent are concerned. Yet a focus on technical issues and a failure to think about ethics are cited as factors in the failure of the UK health record system. In this paper, while the prime concern is the Australian Personally Controlled Electronic Health Record (PCEHR), the discussion is relevant to and informed by the international context. The authors draw attention to ethical and conceptual issues that have implications for the success or failure of electronic health records systems. Important ethical issues to consider as Australia moves towards a PCEHR system include: issues of equity that arise in the context of personal control, who benefits and who should pay, what are the legitimate uses of PCEHRs, and how we should implement privacy. The authors identify specific questions that need addressing.

[1]  Anne Holbrook,et al.  Views on health information sharing and privacy from primary care practices using electronic medical records , 2011, Int. J. Medical Informatics.

[2]  Eike-Henner W. Kluge e-Health Promises and Challenges: Some Ethical Considerations , 2011, ITCH.

[3]  Gary W. Wood,et al.  Patients’ attitudes to the summary care record and HealthSpace: qualitative study , 2008, BMJ : British Medical Journal.

[4]  David-Olivier Jaquet-Chiffelle,et al.  Empowerment of Patients over their Personal Health Record Implies Sharing Responsibility with the Physician , 2011, EFMI-STC.

[5]  Christopher Pearce,et al.  The patient and the computer in the primary care consultation , 2011, J. Am. Medical Informatics Assoc..

[6]  D. Swinglehurst,et al.  Tensions and paradoxes in electronic patient record research: a systematic literature review using the meta-narrative method. , 2009, The Milbank quarterly.

[7]  Catherine Quantin,et al.  Patients' Empowerment of their Personal Health Record Requires Strong Traceability to Guarantee Patients Health Care Security , 2010, EFMI-STC.

[8]  Mark A. Rothstein,et al.  The Hippocratic Bargain and Health Information Technology , 2010, Journal of Law, Medicine & Ethics.

[9]  M. Wynia,et al.  Dreams and Nightmares: Practical and Ethical Issues for Patients and Physicians Using Personal Health Records , 2010, Journal of Law, Medicine & Ethics.

[10]  Melissa M. Goldstein,et al.  Health Information Technology and the Idea of Informed Consent , 2010, Journal of Law, Medicine & Ethics.

[11]  A. Jha,et al.  The promise of electronic records: around the corner or down the road? , 2011, JAMA.

[12]  C. Pyper,et al.  Patients' experiences when accessing their on-line electronic patient records in primary care. , 2004, The British journal of general practice : the journal of the Royal College of General Practitioners.

[13]  T. Hannan,et al.  E‐health in Australia: time to plunge into the 21st century , 2011, The Medical journal of Australia.

[14]  Norman Daniels,et al.  Just Health Care. , 1989 .

[15]  C. Anandan,et al.  The impact of eHealth on the quality & safety of healthcare: a systematic overview & synthesis of the literature , 2008 .

[16]  T. Greenhalgh,et al.  Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace , 2010, BMJ : British Medical Journal.

[17]  Steven H. Brown,et al.  Automated identification of postoperative complications within an electronic medical record using natural language processing. , 2011, JAMA.

[18]  Terrill Bravender,et al.  Confidentiality, consent, and caring for the adolescent patient , 2009, Current opinion in pediatrics.

[19]  Kjetil Rommetveit Tackling Epistemological Naivety: Large-Scale Information Systems and the Complexities of the Common Good , 2011, Cambridge Quarterly of Healthcare Ethics.

[20]  Roger Clarke,et al.  Viewpoint Paper: e-Consent: The Design And Implementation of Consumer Consent Mechanisms in an Electronic Environment , 2004, J. Am. Medical Informatics Assoc..