As health care enters the 21st Century, information technology (IT) is assuming greater importance for clinical care and health delivery systems. IT promises rapid access to the health information required for clinical decisions and management of the health care system, leading to improved health outcomes and more efficient use of resources. Efforts to integrate information technology into health care continue to rise at a rapid rate. In many settings and for many types of services, such information systems are indispensable for health care.
The widespread dissemination of information technology raises several problems. While one of the most heralded areas of health information technology is the electronic patient record, they also draw the most concern [1
]. Since medical records are highly personal, many fear loss of confidentiality and privacy [2
]. Fair information principles, ethical codes and studies of patient's preferences all support the importance of preserving confidentiality and privacy [3
The uses of health information extend beyond the clinical domain [6
]. Health services research, disease registries, and population epidemiology rely on data collected and archived in administrative databases. Such data reservoirs can be linked and are a rich source of knowledge on patterns of health care. The advent of electronic health records could greatly enhance the quality, availability and timeliness of such data sources. Studies based on these records are integral for providing feedback to clinicians and administrators as well as to health care consumers. For example, such studies form the basis of initiatives, based on public demand, for greater accountability in the health care system through the use of report cards.
While such initiatives require access to personal health information, privacy protection initiatives have also become part of public policy, hindering such efforts. Recent legislative initiatives in Canada such as the federal government's Bill C-6 and the province of Ontario's Bill 159 promise to have an impact on the use of health information for health administration, research and clinical care. In Minnesota, a change in the legislation concerning the access to health records required health providers to notify all patients in writing that records could be released for research purposes and to obtain a written authorization for the use of medical records for research [7
]. In the United Kingdom, the Data Protection Act of 1998 (assumed force of law, March 2000) placed restrictions on the processing of health information and enhanced privacy conditions [8
]. Such initiatives are commendable in that the privacy of individual information is of paramount importance.
These legislative initiatives, though, may have unfortunate adverse consequences. Depending on the stringency of the legislation, many research and audit functions such as health services research and cancer registries may be at risk. It is unclear how informed both the population and legislators are concerning the uses of health information. The media has consistently emphasized the Orwellian dimensions of large databases [9
]. There is evidence from the literature that strict consent laws can introduce a potentially crippling authorization bias [10
]. Authorization bias occurs when patients who release personal health information for health research differ from those who do not in important characteristics relevant to the interpretation of health data. Such a bias, applied at a population level results in an inaccurate estimate of the health status of the population.
Recent articles have underlined the challenges of keeping health records both accessible and private [14
]. These studies have largely confined attention to systems level interventions focused on technical methods of health data protection. To our knowledge, little has been done to develop tools to improve patient knowledge and understanding of health information, its uses and the manner in which it is protected. It is unclear how systems initiatives alone will increase patient understanding of health information uses, or empower them in their choices with respect to health information usage.
Innovative models, therefore, are required to meet the demands of the information age. Research on patient decision aids suggests that they improve knowledge, reduce decisional conflict and stimulate patients to be more active in decision-making [16
]. We suggest that an intervention analogous to a decision aid could be developed to enable health consumers to more appropriately specify the level of sharing they wish to have for their personal health information. The advance directive, used in end of life care, is a type of decision aid that can provide a template for such an aid, which we propose to call a 'health care information directive' [17