Article Text
Abstract
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.
- Personally controlled electronic health record
- electronic health records
- ethics
- privacy
- informed consent
- scientific research
- research involving children
- exploitation
- addiction
- advance directives
- information technology
- concept of health
- drugs and drug industry
- epidemiology
- public health ethics
- neuroethics
Statistics from Altmetric.com
Footnotes
Funding The Institute for a Broadband Enabled Society (IBES), University of Melbourne.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
Linked Articles
- The concise argument
Read the full text or download the PDF:
Other content recommended for you
- Holding personal information in a disease-specific register: the perspectives of people with multiple sclerosis and professionals on consent and access
- Highlights from this issue
- Improving data sharing between acute hospitals in England: an overview of health record system distribution and retrospective observational analysis of inter-hospital transitions of care
- Usability of electronic health record systems in UK EDs
- Effect of electronic health records in ambulatory care: retrospective, serial, cross sectional study
- Students’ perceptions on their use of an EHR: pilot questionnaire study
- Patients' consent preferences for research uses of information in electronic medical records: interview and survey data
- Implementation of a consent for chart review and contact and its impact in one clinical centre
- Global eHealth capacity: secondary analysis of WHO data on eHealth and implications for kidney care delivery in low-resource settings
- Requirements and access needs of patients with chronic disease to their hospital electronic health record: results of a cross-sectional questionnaire survey