Creating a National Electronic Health Records (EHR) System September 6, 2002 Canada s health care system is in the midst of a technological revolution. The digitalization of health information promises the quick, efficient transfer of data between a wide range of medical professionals and their patients. This process is broad in scope, including increased access to specialized health information; a faster transfer of the latest medical breakthroughs to doctors and patients; a reduced need to travel long distances for professional diagnoses; and, perhaps the most controversial aspect of this technological revolution, the digitalization and easy transfer of health records and test results between institutions, medical professionals, and patients. While the transition to a digital health care system would undoubtedly improve the speed and quality of health services across the country, issues surrounding patients privacy and nationwide system compatibility have hindered its implementation. These challenges must be fully resolved before a safe, universal health information system can be realized. The upcoming health care reports 1 from Roy Romanow and Michael Kirby should address these concerns and provide concrete recommendations on how Canada can use new technologies, including electronic health records (EHR) 2, to alleviate pressure on the health care system. History The 1997 federal budget provided $50 million over three years to create a Canada Health Information System to expand the use of information and communication technologies in the health care field. The funding enabled former Federal Health Minister Allan Rock to establish the Advisory Council on Health Infostructure to provide advice and recommendations on the development of a comprehensive Canadian health infostructure. Later that year, Canada s Office of Health and the Information Highway (OHIH) was established to develop a long term strategy regarding Canada s Health Infostructure. In its final report, Canada Health Infoway: Paths to Better Health (1999), the Advisory Council affirmed the potential benefits of establishing a nationwide health information highway and urged all levels of government to work together to achieve this vision. In September 2000, Canadian First Ministers were able to agree upon an eight-point action plan which included a commitment work together to develop electronic health records and enhance technologies like telehealth. Also in September, the Canadian federal government announced an investment of $500 million in an independent corporation mandated to accelerate the development and implementation of modern systems of information technology in health. Canada Health Infoway Inc. (Infoway) was incorporated shortly 1 The Standing Senate Committee on Social Affairs, Science and Technology: Study on the State of the Health Care System in Canada, chaired by Senator Michael Kirby, is scheduled to release its final report in October 2002; The Commission on the Future of Health Care in Canada, led by former Saskatchewan Premier Roy Romanow, is set to release its final report in November. 2 The Advisory Committee on Health Infostructure defines an Electronic Health Record as a longitudinal collection of personal health information of a single individual, entered or accepted by health care providers, and stored electronically. These records would be available at any time to providers authorized by the client. The individual would be able to access and request changes to its content. Furthermore, the Advisory Committee specifies that the transmission and storage of the record would be under strict security. 1
thereafter to foster and accelerate the development of a high quality, compatible and effective electronic health information system with a priority on EHRs. Infoway s recently released business plan details a concrete 5-year plan with a 4 Generations framework. The estimated one time cost to implement Generation 3 is $1.3 to $2.2 billion. Thus, to be successful, Infoway will need to secure additional sources of funding. Potential EHR Benefits Health officials are in virtual agreement about the prospective benefits of a nationwide EHR system. Major improvements to the current health care system are likely to include: Convenience. Crucial health information could be delivered instantly to qualified professionals upon approval by the patient. This would eliminate the need for complicated paper transfers from one institution to the other, while ensuring that all relevant information is in the hands of those who need it. Efficiency. Facilitating the transfer of information between health facilities would eliminate the unnecessary duplication of expensive tests and treatments. Medical professionals would have instant access to their clients medical history and any test results that might be relevant to their diagnoses. This would help reduce unnecessary health care costs by increasing the system s efficiency. Quality. A universal EHR system would potentially connect all aspects of Canada s complex health care system. Hospitals, laboratories and medical offices would be digitally linked so as to share valuable health information. The quality of care a health professional is able to provide increases with increased information about his or her patient s medical history. Instant access to this history - subject to patient consent - could dramatically improve the accuracy and therefore quality of care that patient receives. Obstacles to a National EHR System The concept of a nationwide EHR system has been debated in health circles for many years. Despite the undisputed benefits such a system would bring, the implementation process has encountered several obstacles that must be resolved if the EHR system is to become a reality. Privacy. Information privacy is a fundamental right of all Canadians. Ensuring the confidentiality of health records is essential to protecting the dignity and integrity of the individual. A lack of confidence about health information security might cause irreparable damage to the doctorpatient relationship. Canadians right to privacy is protected by two federal privacy laws, the Privacy Act and the Personal Information Protection and Electronic Documents Act. The Privacy Act imposes privacy obligations on some 150 federal government departments and places limits on the collection, use and disclosure of personal information. As of January 1, 2001, individuals are also protected by the Personal Information Protection and Electronic Documents Act, which sets out ground rules for how private sector organizations may collect, use or disclose personal information in the course of commercial activities. 2
Most provinces, with the exception of Prince Edward Island and Newfoundland and Labrador, have passed privacy legislation governing the collection, use and disclosure of personal information held by government agencies. However, the content of these laws can differ dramatically from region to region, creating numerous legal obstacles for the implementation of a nationwide EHR system. As Ontario recently discovered with its failed attempt to pass health privacy legislation in 2001 3, the protection of people s health information is an extremely complex issue about which many Canadians are concerned. Uniformity. In addition to the need to harmonize Canadian privacy legislation, other questions of uniformity have arisen. For example, many Canadian jurisdictions have already instituted some form of electronic information sharing. Unfortunately, these limited, independent initiatives are incompatible with one another, making the system useless for an individual who requires medical assistance in another region of the country. The creation of a secure, nationwide EHR system would ensure the highest level of convenience, efficiency and quality to citizens across the country. The short-term costs of this project could be significant; however, the long-term savings in health care spending promise to make such an investment worthwhile. Given the magnitude of this ambitious project, a viable, pan-canadian EHR system would require the full support and collaboration of all Canadian First Ministers. Future Directions The coming months will be an interesting time in the evolution of the Canadian health care system. The Kirby and Romanow reports on the future direction of the Canadian health care system will deepen the debate on a variety of health issues. At a time when essential decisions about the structure, scope, and financial durability of public health care are being questioned, other important but less fundamental issues, such as the creation of a national EHR system, will necessarily take a back seat. However, while the primary focus will concentrate more on the essential aspects of health care provision, there will be ample opportunity to discuss health technologies as a key component of a modern, effective health care system. One such opportunity will arise with the release of Michael Kirby s final report on the state of the health care system in Canada, expected this October. Volume Five of Senator Kirby s Interim Report, released April 2002, devoted a full chapter to improving Canada s national health infostructure. While the committee was generally quite supportive of the creation of a national EHR system, it expressed certain concerns about the barriers impeding its implementation. 3 Ontario's attempt at a health-specific privacy law, Bill 159, was met with condemnation from both the federal and provincial privacy commissioners. As a result, Bill 159 was abandoned and new legislation has yet to be introduced. The commissioners raised concerns about the Ontario government's concept of "informed consent," which they felt contained too many loopholes. In fact, the office of the Federal Privacy Commissioner responded that there were so many exceptions to the notion of informed consent that, in reality, every person's privacy was abridged arbitrarily this bill is so flawed, it's not a health privacy law, it's a health information disclosure law." 3
The Committee believes that a system of EHR offers tremendous opportunities to integrate the various components of Canada s health care system which currently work in silos. We believe that, at the present time, the lack of integration impedes the establishment of a direct relationship between the inputs used in the health care system and the resulting outputs or outcomes. This creates a significant barrier in evidence-based decisionmaking with respect to health and health care. The Report went on to applaud the work of Canada Health Infoway Inc. as an important step in resolving these challenges to achieve the full integration of the various health infostructures. The report also recommended the creation of a clear, universal definition of the rules and standards for the collection, storage and use of confidential health information. In the committee s opinion, this would greatly improve public support of a nationwide EHR system. A second opportunity to call attention to the issue of a national EHR system will be the release of Roy Romanow s report on the future of health care in Canada, due in November. As with Senator Kirby s final report, Romanow can be expected to speak to the issue of national EHRs and their potential to alleviate some of the current strain on the health care system. Unlike Kirby, however, Romanow will likely focus more attention on the public s hesitation surrounding EHRs and possible solutions to the obstacles that have been identified. Public uncertainty about a national EHR system remains despite the numerous potential well-known benefits. This can partially be explained by the Canadian public s natural aversion to any change to their beloved health care system. However, legitimate concerns about the security of electronic health records are also an important contributing factor. These issues will have to be resolved to the satisfaction of the Canadian public if the national EHR system is to be implemented. In sum, the potential benefits of a nationwide EHR system to the Canadian health care services are considerable. If properly implemented, virtually every aspect of health care would be enhanced. This important initiative should not be forgotten in the impending debates about the future of Canada s health care system. 4
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