Information privacy in the British Columbia health care system: issues and challenges

This thesis investigates the challenges to the protection of privacy in the health care field and the regulatory response by the government of British Columbia to legislate information and privacy rights. Recent social, political, economic and technological developments all pose potential threats to privacy. An examination of the privacy literature demonstrates that the subject of privacy has captured the attention of many disciplines. Furthermore, the legal, philosophical, political and socio-cultural literature suggests diverse views exist about the definition and value of privacy. Nevertheless, in Canada and other western countries, privacy is considered an important value in a liberal democratic state. Specifically, "information privacy" where individuals have some control over the dissemination of personal information is a subject which has been gaining salience on the public agenda over the past thirty years. In response to the modem welfare state's expanding data banks of personal information and the proliferation of computerization, several western democracies have enacted data protection policies. A comparative examination of data protection policies highlights different approaches to the protection of privacy in the United States and Canada. The government of British Columbia drew from these experiences and enacted stronger data protection legislation. The Freedom of Information and Protection of Privacy (FOIPP) Act gave the Information and Privacy Commissioner regulatory powers to overturn government decisions and to issue binding orders. Privacy of health information is an important data protection issue. Traditionally, the medical relationship was confidential and free from third party interference. A critical survey of theories in the health literature describes the physician-patient relationship and information control. The proliferation of information within society increases the need to control and to limit the use of personal health records. Three trends in the health care field challenge the traditional professional relationship between the physician and the patient. First, the status of the physician changes as more individuals and organizations gain access to patient information. Moreover, consumers of health services demand more information from physicians. Second, the multi-disciplinary approach to health care delivery requires the exchange and sharing of information among health care professionals. Researchers and public health officers require identifiable patient information to conduct studies and to protect public health. Third, government agencies request more information from the health care sector and recipients of social benefits. The information is used to regulate and control the publicly funded health care system. The provision of hospital insurance, medicare and other health care insurance programs entails the collection of large quantities of information. A variety of technologies including the Pharmanet computerized drug information system and card technologies provide administrative data and permit the sharing of health information among government agencies and health care professionals. Some critics and advocates suggest the new technologies reduce privacy further and increase the potential for a "surveillance society." An examination of the policy literature, parliamentary debates and interviews with members of the policy community promoting information rights in British Columbia demonstrates that privacy is important both politically and symbolically. An assessment of the FOIPP Act and interviews with hospitals and self-governing professional bodies suggest patients and organizations have benefited from the legislative changes. The statutory requirements of the Act present some challenges to the financial and organizational resources of hospitals and self-governing professional bodies. A study of the health policy environment and the protection of privacy highlights a number of important trends in Canada. These include: the increasing legislative and judicial protection of privacy rights, the emerging patient rights movement, the regulatory challenge for governments to balance the right to privacy with the need to provide efficient and effective services using information technologies and the influential role of the policy community in the field of data protection.