The health care information directive

Ross EG Upshur, Vivek Goel

Developments in information technology promise to revolutionise the delivery of health care by providing access to data in a timely and efficient way. Information technology also raises several important concerns about the confidentiality and privacy of health data. New and existing legislation in Europe and North America may make access to patient level data difficult with consequent impact on research and health surveillance. Although research is being conducted on technical solutions to protect the privacy of personal health information, there is very little research on ways to improve individuals power over their health information. This paper proposes a health care information directive, analogous to an advance directive, to facilitate choices regarding health information disclosure. A health care information directive is described which creates a decision matrix that combines the ethical appropriateness of the use of personal health information with the sensitivity of the data. It creates a range of possibilities with in which individuals can choose to contribute health information with or without consent, or not to contribute information at all. The health care information directive may increase individuals understanding of the uses of health information and increase their willingness to contribute certain kinds of health information. Further refinement and evaluation of the directive is required.