Using personal health information: do we manage conflicting interests?

The discipline of health informatics is concerned with developing the information systems that facilitate collection, manipulation and dissemination of personal health information. It promotes the benefits of using personal health information for secondary purposes, including policy development, service planning and research. At the same time the health informatics community is a strong advocate of privacy and the need to protect individuals from negative consequences arising from unauthorised use of their personal health information. This creates a dilemma for health informatics professionals since there will be occasions when the rights and interests of individuals conflict with the rights and interests of the public, or particular sections of the public. In such instances, the community as a whole, and individual members, may be required to take a stance on whether to prioritise privacy over public needs and interests. Such instances are likely to increase in the future as demands for access to personal health information increase. This paper considers the way the health informatics community approaches the dilemma. It reports on a study which analysed various perspectives on the issue as expressed in HISA conference proceedings. The study identified six discourses, each of which focuses on different uses of personal health information. The study found that the discourses expressed strong support for expanded use of personal health information where the public interest was convincingly argued, although the interpretation of what constituted public interest varied between the discourses. The study also found that while higher level discussions highlight the potential for negative consequences arising from expanded uses of personal health information, this was not often discussed in the conference texts. It is argued that such concerns should be considered, particularly in the light of discussions around the Commonwealth government's Individual Health Identifier and Personally Controlled Electronic Health Records initiatives.