The Health of Canadians The Federal Role
Volume Five: Principles and Recommendations for Reform - Part I
Health care technology is a very broad concept that can be defined as “the set of techniques, drugs, equipment, and procedures used by health care professionals in delivering medical care to individuals and the systems within which such care is delivered.” Although this definition encompasses drugs, this chapter will discuss issues related to “hard” technologies only. Issues related to drugs will be addressed in the Committee’s Volume Six (October 2002).
Everybody agrees that health care technology constitutes an important component of health care delivery in advanced countries. Health care technology can improve the speed and accuracy of diagnosis, cure disease, lengthen survival, alleviate pain, facilitate rehabilitation, and maintain independence. For example, a brief tabled with the Committee by Medical Devices Canada (MEDEC) stated:
Modern medical devices and technologies have not only improved the health outcomes for Canadian patients, but by enabling less invasive procedures and shorter hospital stays, have also supported cost-effectiveness in the health care system.
However, many concerns were raised during Committee hearings about the availability, financing and assessment of both new and existing health care technologies. The Committee believes that these issues need to be addressed if Canadians are to derive the maximum benefits health care technology can provide, while sustaining an affordable health care system.
Despite the importance of health care technology in delivering quality health services, the availability of many new technologies is disproportionately low in Canada given its level of health care spending. In its Phase Two report, the Committee provided data that showed that, although Canada is the 5th highest among OECD countries in terms of total spending on health care (as a percentage of GDP), it is generally among the bottom third of OECD countries in the availability of health care technology. For example, Canada ranks 21st of 28 OECD countries in the availability of CT scanners, 19th of 22 in availability of lithotriptors, and 19th of 27 in availability of MRIs. Its only favourable ranking is in the availability of radiation equipment, where it ranks 6th out of 17.
Data also showed that this technology gap is widening. For example, Canada’s deficit in the availability of MRIs worsened between 1986 and 1995 relative to other leading OECD countries including Australia, France, the Netherlands and the United States.
The Phase Two report also stressed that availability is not the only issue with respect to health care technology. The “aging” of that technology is also of concern. For example, information provided to the Committee indicates that between 30% and 63% of imaging technology currently used in Canada is outdated. The outdated nature of health care technology depends on both the number of years of usage and the relative effectiveness of the equipment in terms, for example, of the quality of the image or the dose of radiation.
It is not clear why Canada is not
introducing and making use of health care technology at the same pace as other
OECD countries and why it does not routinely replace aging equipment.
Indeed, two factors seem to contribute to this situation.
First, Canada imports most of its health care technology.
This contrasts sharply with countries such as Germany, France and the
United States which have a strong health care technology industry.
This "trade deficit" in health care
technology might be explained in part by low levels of government incentives
towards the development of this industry in Canada. Second, fiscal pressures faced by all levels of government
throughout the 1990s have resulted in low levels of capital investment in
Canada’s health care system.
Along with numerous witnesses, the Committee is concerned that the shortage of health care technology and the use of outdated equipment impede exact diagnosis and inhibit high-quality treatment. As stated in our Phase Two report, not only can this situation negatively impact on the health of a patient, but it also raises concerns about the liability of health care providers.
Moreover, the Committee is concerned that the deficit in health care technology has translated into limited access to needed care and lengthened waiting times. In our view, and in accordance with Principle Twenty enunciated in Chapter 2, timely access to diagnosis and treatment is a crucial objective that must be ensured in Canada’ publicly funded health care system.
Overall, the Committee believes that health care technologies are key to providing Canadians with an optimal level of quality health care. Enhancing the availability of new health care technologies and the appropriate replacement of outdated equipment can serve to reduce waiting times and ensure timely access to the best available diagnoses and treatments. Faster and more effective services in turn have the potential to alleviate some of the cost pressures on the health care system in general.
As mentioned above, many witnesses stressed that fiscal pressures faced by all levels of government throughout the 1990s have resulted in low levels of capital investment in Canada’s health care system. They suggested that the current deficit in health care technology requires a serious re-evaluation of the way in which equipment is acquired and funded in Canada. Moreover, witnesses contended that the aging of the Canadian population as well as increased public expectations will greatly influence future needs for health care technology. Accordingly, in addition to increased investment by governments, witnesses recommended that health care policy-makers should forecast future technology needs and develop an appropriate investment plan for action.
The federal government has recently responded to the deficit in health care technology. In September 2000, it announced that it would invest a total of $1 billion in 2002-01 and 2001-02, to assist provinces and territories in the purchasing of new medical equipment. This funding was made available upon passage of the legislation in October 2000, allowing provincial and territorial governments to start making immediate acquisitions of necessary diagnostic and clinical equipment.
Although witnesses have welcomed this injection of new federal funds, a number of concerns remain. First, witnesses indicated that some provinces have not applied for their share of this fund, possibly because the federal government requires matching grants and some of the smaller provinces have difficulty financing the provincial share of the matching funds. Second, additional resources are required to operate the equipment. Even if provinces can afford their share of the capital investment, they may have difficulty funding the ongoing operating costs. Estimates provided to the Committee suggest that a $1 billion investment in new equipment necessitates an additional $700 million to cover operational costs. Third, the investment does not address the problem of the old equipment that needs to be upgraded. It was estimated that a further $1 billion investment would be required for the upgrading of existing equipment. Fourth, even with this new funding, Canada would still not rank at a level comparable to that of other OECD countries. Lastly, the Committee heard that there are apparently no mechanisms for ensuring accountability on the part of the provinces and territories as to exactly where money targeted towards purchasing new equipment is actually spent.
Along with witnesses, the Committee welcomes the injection of new federal funds as an important step towards the acquisition of needed health care technology. We do, however, believe that additional funding is required. Such additional federal investment should be structured in such a way as to make the grant more attractive to the provinces and territories. We believe that, at the same time, the federal government should ensure that any new funding for health care technology be spent on incremental purchases of medical equipment and not be used to subsidize already planned expenditures.
Furthermore, the Committee is concerned about the lack of accountability mechanisms for ensuring that provinces and territories use federal funds in accordance with the intended purpose. This is why we feel, as stated under Principle Three (Chapter 2), that a better accountability mechanism is needed for targeted federal funds. Therefore, the Committee recommends:
That the federal government initiate a long-term program to assist provinces and territories in financing both the acquisition and ongoing operation of health care technology. Such a program should incorporate clear accountability mechanisms on the part of the provinces and territories on their use of these targeted federal funds.
Finally, it is the view of the Committee that the decision to acquire new health care technology should also be based on the appropriate assessment of its efficacy and cost-effectiveness. This issue is discussed in more detail below.
3.3 Investing More in Health Care Technology Assessment
During Phase Two of its study, the Committee learned that health care technology assessment (HTA) provides information on safety, clinical effectiveness and economic efficiency. HTA often also considers the social, legal and ethical implications of the use of existing or new health care technologies. A brief tabled with the Committee explained:
Health Technology Assessment (HTA) is the process of evaluating medical technologies (devices, equipment, procedures and drugs) and their use. HTA researchers collect, synthesize and critically evaluate the available research on medical technologies. Based on an interdisciplinary approach, an assessment can encompass analyses of safety, efficacy, effectiveness, quality of life and patient use. Other important factors such as economic, ethical, and social implications and other effects which may be unintended, indirect or delayed, may also be considered.
HTA can assist in deciding whether a new technology should be introduced and when an existing technology should be replaced. More importantly, HTA contributes in many ways to improving the quality of health care: it ensures that health care technologies are effective, that they are applied in the appropriate cases and conditions, and that the least costly technology is used to achieve the desire outcome.
In recent years, the federal and provincial governments have supported the creation of various health care technology assessment agencies. The first provincial HTA agency in Canada was established in 1988 in Quebec – the Conseil d’évaluation des technologies de la santé du Québec. A national agency, the Canadian Coordinating Office for Health Technology Assessment (CCOHTA) was established in 1989. The British Columbia Office of Health Technology Assessment was established in 1990. The Health Technology Assessment unit of the Alberta Heritage Foundation for Medical Research was established in 1996. Health services utilization agencies, with close links to their respective provincial governments, which undertake some HTA activities, have been formed in Manitoba, Ontario and Saskatchewan. At the national level, CCOHTA plays three major roles: it co-ordinates all HTA activities across the different jurisdictions; it attempts to minimize duplication by other national or provincial/territorial organizations; and it performs HTA activities on its own.
The Committee was told that, despite the work performed by these agencies, not enough attention is devoted to HTA in Canada. On a worldwide basis, Canada spends less in HTA activities than other countries with which Canada ought to at least be on a par. For example, all levels of government invest less than $8 million in Canada (some $4.3 million by CCOHTA and about another $3 million by provincial agencies), whereas the United Kingdom provides some $100 million to its national HTA body – the National Institute for Clinical Evidence (NICE). As a result, health care technologies are often introduced into Canada’s health care system with only superficial knowledge of their safety, effectiveness and cost.
Martin Zelder, Director of Health Policy Research at the Fraser Institute, suggested that Canada should use the results of HTA undertaken offshore. Other witnesses cautioned, however, that we cannot simply translate the results of HTA studies realized elsewhere. The application of foreign research is complicated by certain factors such as differences in demography and patterns of disease, differences in the costs of various health care resources, and differences in patterns of practice. Although CCOHTA shares information on health care technology with similar organizations in other countries, there are limits to the overlap in international technology assessments:
The efficacy of the technology may generalize, the effectiveness may not, and definitely cost will not. A US cost effectiveness analysis is not a Canadian one. There are different relative prices embodied in those cost figures than exist in Canada.
Another important issue raised before the Committee relates to the poor dissemination of the evidence generated by HTA activities to health care providers and managers. An improvement in this regard would certainly raise the quality of health care delivery and strengthen the formulation of public health care policy.
Overall, the Committee agrees with witnesses that health care technology assessment is a critical activity and that more HTA needs to be undertaken when considering the introduction of a new technology or the replacement of existing medical equipment. We also agree that, given the rapid advancement in health care technology, the capacity to disseminate the outcomes of HTA activities should be enhanced. It is the view of the Committee that the federal government, through its role in financing innovative health research, should devote more funding to the assessment of new and existing health care technologies. Therefore, the Committee recommends:
That the federal government increase the funding it provides to CCOHTA and other HTA agencies.
That this additional funding be used to strengthen HTA capacity in Canada as well as to improve the dissemination and promotion of HTA findings to health care providers and managers.
Finally, the Committee was told that little information exists in Canada about the precise contribution of technology to the costs of health care. Attempts to quantify the connection between technology and rising health care expenditures have suffered from a lack of reliable data. The majority of studies to date have treated technology as a “residual”, attributing to technology that portion of the increase in health care spending not accounted for by more easily identifiable factors.
Therefore, we do not know how much Canada spends on health care technology nor do we know the extent to which health care technology has an impact on the health and quality of life of Canadians. It is not possible to know whether the cost of health care technology represents an “add-on” or whether it is offset by reductions in the actual costs of the treatments they permit. Witnesses unanimously pointed to the need to undertake research in this area.
The Committee concurs with witnesses that there is currently an under-production of relevant and timely information on the costs and consequences of the use of health care technologies and that more research in this area would greatly benefit the whole health care system. Therefore, the Committee recommends:
That the federal government provide additional funding to the Canadian Institutes for Health Research and the Canadian Health Services Research Foundation to support research into the potential impact of health care technology on health care costs.
Health care is a sector that relies intensively on information. With the “right information”, a health care provider can order the right treatment, prescribe the most appropriate medication or recommend the best preventive approach. With the right information, an individual is better able to make good decisions with respect to his/her health and lifestyle. With the right information, health care policy makers and managers can decide on how to allocate financial, physical and human resources in the most cost-effective and efficient way.
Currently, in Canada, it is often not possible to access the right information in order to deliver, manage and use health care. During the Phase Two hearings, the Committee was told that Canada’s health care system is not making use of modern information and communications technology to the same extent as do other information intensive industries. Witnesses suggested that greater use of information and communications technology would enhance the availability of, the accessibility to, and the sharing of the “right information”. This would significantly improve evidence-based decision making by health care providers, health care managers and health care policy makers, as well as by patients.
The use of information and communications technology in the field of health care is often referred to as “telehealth”. As explained in Volume Two of the Committee’s study, the telehealth applications that are envisioned in Canada for improving the sharing of the “right information” and enhancing health care quality include the following:
· a system of electronic health records (EHR). The EHR is an automated provider-based system within an electronic network that provides complete patients’ health records in terms of visits to physicians, hospital stays, prescribed drugs, lab tests, and so on.
· Tele-medicine and tele-homecare. These telehealth applications offer the possibility of delivering care over large and small distances.
· An internet-based health information network. The purpose of this network is to empower individuals to make informed choices about their own health and well-being, their health care system and health care policy.
Telehealth is the foundation of what many Canadians call the “health infostructure”. Various components of a health infostructure are currently being implemented at all levels of government. However, these initiatives are all at different stages of development. In addition, they are isolated within organizations, institutions and provinces and currently constitute “a patchwork of unconnected projects, whose value would increase immensely if part of a coherent whole.” The key challenge is to bring all these diverse infostructures together into a uniform and comprehensive information system. This challenge clearly requires federal and provincial/territorial collaboration. As a first step, Canada needs to move towards the development of electronic health records.
4.1 Establishing a System of Electronic Health Records
A system of electronic health records (EHR) is certainly the first step in gathering health-related information that will allow for evidence-based decision making throughout the whole health care system:
With sound and timely information on health determinants and outcomes of previous decisions, health care providers will be able to make informed decisions in their patients’ interests. With better understanding of health impacts and costs of previous actions, policy makers and managers will be able to make the evidence-based decisions needed to carry forward reform and sustain the health care system. Better health information will allow the general public to engage more fully in the health care policy debate and hold the health care system to account. As consumers, they will be able to shop around knowledgeably for the health care providers and services that meet their needs.
An important characteristic of an EHR system is that it can make patient data available to health care providers anywhere on a need-to-know basis by connecting interoperable databases that have adopted the required data and technical standards. 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 decision-making with respect to health and health care.
During the Committee’s hearings, many witnesses described the EHR system as the cornerstone of an efficient and responsive health care delivery system that is able to improve both quality and accountability. Such a system, they stated, is a necessary prerequisite to a truly patient-oriented health care system. The Fyke report in Saskatchewan expressed similar views:
The electronic health record (EHR) is the cornerstone of an efficient and responsive health care delivery system, quality improvement and accountability. Without it, the prospects for a patient-friendly health care system, optimal teamwork, and efficiency are dim.
In addition to the Fyke Commission, the full deployment of a system of EHR was also endorsed by other provincial commissions on health care, including the Health Services Restructuring Commission in Ontario, the Clair Commission in Quebec, and the Mazankowski report in Alberta.
All levels of government in Canada have recognized the importance of deploying a system of EHR. In fact, on September 11, 2000, the First Ministers agreed to work together to develop an EHR system over the next three years and to work collaboratively to develop common data standards to ensure compatibility and interoperability of provincial health information networks and to ensure stringent protection of personal health information.
In support of the agreement reached by First Ministers, the federal government committed $500 million in 2000-01 to accelerate the adoption of modern information technologies in the health care system. The Committee was informed that this money has been invested in a not-for-profit corporation, known as Canada Health Infoway Inc. (or Infoway), that will work with provinces and territories to create the necessary common components of an EHR over the next three to five years. Currently, Infoway is working on two different initiatives:
· First, it has created a National Registry of EHR that will document – organizationally, regionally, provincially and nationally – the state of developments in building EHR.
· Second, and jointly with CIHI and other stakeholders, it is developing coordinated and consistent standards for collecting, exchanging and sharing information in the pharmacy arena.
The Committee believes that the work undertaken by Infoway represents a major step towards the full integration of the various health infostructures. We welcome this collaboration between the federal government and the provinces and territories. In our view, such collaboration should foster the development of a unique model of EHR. We believe that both Canadians and their publicly funded health care system will benefit most greatly if the system of electronic health records is national in scope. To achieve this, the federal government must provide leadership and the necessary resources. Therefore, the Committee recommends:
That, once the three- to five-year period is over, the federal government provide additional financial support to Canada Infoway Inc. so that Infoway develop, in collaboration with the provinces and territories, a national system of electronic health records.
The Committee is aware that the public has certain misgivings about the computerization and networking of personal health records, and more particularly in regard to the nature of the information gathered and how it is collected, stored and used. We concur with the Advisory Committee on Health Infostructure that guidelines for the collection, storage and use of information must be developed to ensure a harmonious integration. Therefore, the Committee recommends:
That the federal government, in collaboration with all stakeholders involved in the computerization of health records, define standards and rules for the collection, storage and use of such information.
Perhaps the most important benefit to be gained from the deployment of EHR across the country is access to evidence-based information that will be used to assess quality of care, system performance and patient satisfaction. The EHR will also enable the evaluation of outcomes of various procedures. This will foster accountability and transparency in decision-making regarding health care delivery and policy and promote improvement in the quality of care.
4.2 Evaluating Quality, Performance and Outcomes: the Need for Independent Assessment
The Committee is convinced that long-term investment in information and communications technology, including an EHR, will allow the collection of better and more timely information on access to care, quality delivery, system performance and patients’ outcomes. We also agree with witnesses that governments should finance the deployment of a EHR system and the development of a broader, health infostructure that is national in scope.
Moreover, we acknowledge the concern raised by many witnesses that, while governments must finance the EHR, they should not be responsible for assessing health data and evaluating quality and outcomes. These witnesses explained that, currently, collection and evaluation of health-related information is done by the same people who are responsible for paying for, and for providing, health services – that is governments. There is no independent assessment of outcomes and no external audit of the impact of various procedures on patients.
This concern was also raised in recent reports by provincial commissions on health care. For example, the Premier’s Advisory Council on Health (Alberta) stated:
Tracking and monitoring outcomes and providing regular reports to the public is an essential way of improving quality in health care. However, when government and health authorities measure and assess their own outcomes and results, it can put them in a conflict of interest.
This Advisory Council recommended the establishment of a permanent, independent “Outcomes Commission” to track results, assess outcomes and report regularly to the population.
Similarly, in Saskatchewan, the Fyke Commission recommended the establishment of a “Quality Council”, an evidence-based organization, working at arm’s length from government. The mandate of this Quality Council would involve reporting regularly to the provincial legislature, as well as to the public on a variety of issues, including: trends in health status, costs/benefits of health care interventions, clinical practices and clinical errors, evaluation of technology, equipment and drugs, etc. The Fyke report stressed that:
(…) the Quality Council has the potential to depoliticize decisions, find creative solutions to long-standing problems, free the public from the tyranny of anecdote and ill-informed opinion about the state of care, and reveal where the system provides value for money and where it does not.
In other words, these provincial reports recommended that the role of the evaluator of the health care system be separated from that of the insurer and provider. This was also suggested in a recent report, which stated:
(…) unbundling the functions – insurer, service provider, and evaluator of health care quality – that governments now play in the health care system (…) will improve incentives to collect information and make it widely available, allow consumers to hold providers accountable by abandoning those with unacceptable waiting times or treatment outcomes, and allow governments to exercise a more vigorous and demanding standard or regulatory oversight.
The Committee believes that the evaluation of our health care delivery system is essential in order to provide care that is evidence-based and corresponds to the needs of patients. We strongly support the view of witnesses and provincial reports that the roles of the funder and provider should be separated from that of the evaluator in order to obtain independent assessment of health care system performance and outcomes. While such evaluation should be performed at arm’s length from the insurer and the provider, it should be financed by public funds.
Moreover, and as stated under Principle 16 (Chapter Two), it is the view of the Committee that such independent evaluation should be performed at the national (not federal) level. This would allow for the pooling of the expertise, thereby making the most effective use of the limited human resources that are currently available in Canada, and result in major economies of scale. In addition, the smaller provinces, which would not otherwise be able to sustain a truly effective monitoring and evaluation system, would clearly benefit from the results of a national evaluation process.
The Committee believes that such a national process for evaluating health care system performance and outcomes should be built on those national organizations that are currently devoted to the task of performing independent health care system evaluation. More precisely, evaluation of this type should be carried out at three levels:
· First, the role of the Canadian Institute for Health Information (CIHI) should be strengthened. In addition to its responsibilities in the public health field, it should take the task of reporting – publicly or confidentially – on the performance of all regions and all institutional providers.
· Second, the Canadian Council on Health Services Accreditation should on a regular basis recommend how to correct deficiencies that it has identified in institutions delivering health services. At present, this review is voluntary; it should be made mandatory.
· Finally, the Citizens’ Council on Health Care Quality should be responsible for advising on the development of standards and policy with respect to health care system performance and outcome evaluation.
The extent of the authority devolved to each organization would have to be specified. Do they rely exclusively on public pressure and moral suasion, or would they be able to compel providers who do not meet agreed quality standards to implement changes? There are clearly many jurisdictional issues to be resolved, regardless of the exact mandate of such national evaluative bodies. But as a first step, the Committee recommends:
That the federal government, in collaboration with the provinces and territories, undertake the establishment of a national system of evaluation on health care system performance and outcomes. Such a national system of evaluation should: 1) be built on existing expertise and institutions; 2) remain independent from governments; and 3) receive appropriate funding from the public purse. The federal government should devote substantial funding to this very important undertaking.
Numerous witnesses acknowledged that the deployment of a system of EHR, that will capture and translate information on system performance and treatment outcomes, will enhance transparency in health care financing and delivery. Moving towards a uniform EHR system will also facilitate the monitoring and tracking of the use of public health care funds. This, overall, will foster accountability throughout the health care system.
But what does “accountability” mean exactly? In the view of the Committee, accountability refers to the obligation to demonstrate and take responsibility for system performance when measured against a set of agreed targets or goals. As mentioned in our Volume Four, there are two directions to government accountability. The first involves governments reporting to Canadians on their policies and programs with respect to health and health care (public accountability). The second involves provincial/territorial reporting to the federal government on the use of federal funding (government to government accountability).
A major step towards greater public accountability was accomplished in February 1999 with the signing of the Social Union Framework Agreement (SUFA) by federal and provincial/territorial governments (excluding Quebec). Under SUFA, federal and provincial/territorial governments are committed to increasing transparency and accountability to the Canadian public on social policy outcomes – including health care policy – so that Canadians can assess the performance of social programs. More specifically, SUFA states that each level of government agrees to:
· Monitor and measure outcomes of its social programs and report regularly to its constituents on the performance of these programs;
· Share information and best practices to support the development of outcome measures, and work with other governments to develop, over time, comparable indicators to measure progress on agreed objectives;
· Publicly recognize and explain the respective roles and contributions of governments.
In addition to recognizing the need to strengthen public accountability, governments signatory to SUFA agreed to “use funds transferred from another order of government for the purposes agreed and pass on increases to its residents”. In the view of the Committee, developing such information on the use of public funds would significantly contribute to government-to-government accountability.
Currently, provinces and territories are not required to report explicitly on their utilization of federal transfer payments provided under the Canada Health and Social Transfer (CHST). The government-to-government accountability mechanism rests, at this moment, on compliance with the five principles of the Canada Health Act. This legislation also requires provincial and territorial governments to voluntarily provide an annual statement describing the operation of their health care insurance plans as they relate to the principles of the Act. The information provided by the provinces/territories serves as a basis for the Canada Health Act annual report.
SUFA also provides for greater transparency and public accountability with respect to disputes related to the Canada Health Act. With respect to transparency, SUFA establishes a process for dispute avoidance and resolution that will apply to the interpretation of the principles of the Act and that “should be simple, timely, efficient, effective and transparent”. With respect to public accountability, the Agreement states that “governments will report publicly on an annual basis on the nature of intergovernmental disputes and their resolution.” 
Such a dispute resolution mechanism for the interpretation of the Canada Health Act has not been developed yet. When they met in January 2002, provincial Premiers and territorial Leaders asked Premier Klein to take the lead in working with the federal government to finalize, by April 30, 2002, the process for resolution of disputes under the Canada Health Act. It is the hope of the Committee that such a dispute resolution mechanism will be available soon and that, as a result, progress will be made to enhance transparency and accountability in the interpretation and enforcement of the Canada Health Act. We believe that such progress would significantly contribute to the renewal and restructuring of health care in Canada.
4.4 Ensuring Confidentiality and Protection of Personal Health Information
The issue of privacy, confidentiality and security related to personal health information in the context of an EHR system, as well as in the broader context of a national health infostructure, was perhaps the most sensitive one raised during the Committee’s hearings on this question. While these three terms are sometimes used interchangeably, they are, in fact, entirely separate issues:
· Privacy refers to the right of individuals to control their personal health information – including the collection, use and disclosure of that information.
· Confidentiality deals with the obligation of health care providers to protect the personal health information of their patients, to maintain secrecy and not misuse or wrongfully disclose it.
· Security refers to the set of standards in and around information systems that protect access to the system and the information it contains.
In other words, privacy drives the duty of confidentiality and the responsibility for security. Protection of privacy in Canada is a shared responsibility between the federal and provincial/territorial governments. Currently, the legal framework for protecting individual privacy is composed of a patchwork of various laws, policies, regulations and voluntary codes of practice. The Committee was told that the first step that needs to be made is to gain support for the harmonization of legislation and regulation across Canada so that the privacy of Canadians will be protected in a reasonably uniform way in matters of health across the country.
The Committee was pleased to learn that a resolution for the harmonization of legislation is being examined by all jurisdictions and that an agreement is expected soon. We also fully support Infoway in promoting a common position on information privacy, confidentiality and security relating to the deployment of EHR systems across the country.
Moreover, the Committee acknowledges that the Personal Information Protection and Electronic Documents Act or PIPEDA, promulgated in June 2000, has stimulated intensive debate and study of this question in the past two years. We are pleased that several groups in the health sector have seriously addressed many of the concerns raised by PIPEDA, and in particular, the need to protect personal health information, while at the same time allowing restricted use of such information for essential purposes such as health care management – which includes the provision, management, evaluation and quality assurance of health services – and health research.
other Canadians, the members of the Committee place a very high priority on
the protection of personal health information.
Though protection of personal health information is understandably of
very high importance, we must recognize what else is at risk if access is
summarily rejected because of perceived threats to privacy and
confidentiality. This being said,
the Committee believes that if Canadians are to allow restricted access to
personal health information for essential functions, such as health research
and health care management, it is imperative that their personal health
information be adequately protected. Our
main observations and recommendations with respect to privacy of personal
health information are detailed in Chapter Five, under
4.5 Investing in Telehealth in Rural and Remote Communities
Not only can telehealth applications enhance the sharing of the right information among various health care providers and health care settings, but they also offer the possibility of delivering care over large distances. Telemedicine is a form of telehealth application that can greatly improve quality and timely access to care, particularly in rural and remote Canada.
As indicated in the Committee’s Phase Two report, up to 30% of Canada’s population lives in rural, remote and northern areas of the country. Accessibility to health care is one of the four patient-oriented principles of the Canada Health Act. However, rural Canadians are increasingly voicing concern regarding disparities between services available in rural and remote areas and those in urban areas.
The federal government has responded to the concerns of rural Canadians in a number of ways. For example, the Office of Rural Health was established in September 1998 to ensure that the views and concerns of rural Canadians are better reflected in national health policy and health care system renewal strategies. In February 1999, the federal government announced funding of $50 million over three years (from 1999-00 to 2001-02) to support pilot projects under the “Innovations in Rural and Community Health Initiative”.
In June 2000, the federal government announced a National Strategy on Rural Health that it sees as an important milestone on the road to ensuring that all Canadians have reliable access to quality health care. Then, in July 2001, the federal government announced the establishment of a Ministerial Advisory Committee on Rural Health to provide advice to the federal Minister of Health on how the federal government can improve the health of rural communities and individuals.
The Committee believes that tele-medicine is a critical component of the overall rural health policy of the federal government. In the context of rural health, telemedicine offers the following advantages: it addresses the shortage of rural health care providers and medical training; it improves rural health infrastructure; it allows for conformity with the accessibility principle of the Canada Health Act; and it ensures a more equitable development of health information systems across the country. Therefore, the Committee recommends:
That the federal government maintain its support to rural health and invest in telehealth applications that will enhance access to care and improve the quality of health services in rural and remote communities.
Given the unique health and health care needs of rural and remote communities, the Committee has decided to devote specific hearings on this subject and to release a thematic report with detailed recommendations in the coming year.
Technology in various telehealth applications is seen as vital to the timely delivery of quality home care services. Tele-homecare offers numerous benefits by:
· Reducing unnecessary visits to emergency rooms;
· Reducing unscheduled visits to primary care physicians;
· Providing early intervention or prevention of repeat hospitalizations;
· Teaching the patient how to manage early symptoms, thus avoiding the development of an acute pathological condition, and
· Gathering information on vital signs’ data fluctuations within a 24-hour period, an important component of differential diagnosis and early prevention.
Witnesses told the Committee that tele-homecare is not a substite for any of the already available health services. Rather, it complements and reinforces the health care infrastructure by providing a continuum of care with a particular focus on patient’s needs.
As indicated in the Committee’s Phase Two report, the ability to connect a patient’s in-home monitoring equipment to local health care facilities over telephone lines is already a reality. Other possibilities are close to realization. In fact, tele-homecare applications are numerous and include for example: telemedicine involving medical consultations, diagnosis, rehabilitation for the home care patient from a distance; tele-education for information exchange between health care providers and the home care patient; telemonitoring where patients undergoing hemodialysis, cardiac, oncological treatments can be monitored or elderly persons can be assisted at home.
According to the Office of Health and the Information Highway (Health Canada), Canadian tele-homecare is in its early stages of development. Several existing projects are utilizing a range of applications from a telephone information line equipped with high performance diagnostic software to a tele-monitoring device that can transmit vital signs data over the telephone line. Currently, tele-homecare projects in Canada are primarily directed at tele-monitoring and tele-consultation following a visit to the hospital or as a replacement for a visit. A number of large home care organizations are using information and communication technologies to transmit administrative and case management information by qualified personnel from the point-of-care to central databases and to community health information networks.
Many witnesses pointed out the need to develop a national vision of home care in which tele-homecare plays a significant role. Once a national vision is clearly developed, specific tele-homecare activities, national in scope, should be developed. The success of such a national undertaking requires, according to witnesses, strong federal leadership along with collective and immediate action on the part of all stakeholders. The Committee will detail its final recommendations on tele-homecare in its thematic report on home care.
An Internet-based health information network is a system that empowers individuals to make informed choices about their own health and well-being, their health care and about health policy. Health information to the general public via the Internet could include for example: 1) general health information (health promotion and disease prevention); 2) information on treatment options and drugs, as well as on illness management (e.g. blood pressure, diabetes or obesity); information on public health issues (e.g. quality of air, water and food); 4) information on the effects of health determinants; 5) health and health care policies at the federal, provincial and territorial levels as well as the policies of other countries; 6) data on health outcomes of public policies; 7) accountability data (such as report cards on the performance of the health services and providers).
A recent report by the Federal/Provincial/Territorial Advisory Committee on Health Infostructure stated that the public sector has a limited presence in providing health information to the public in an electronic form. According to the report, the most notable effort in Canada is the Canadian Health Network. The Canadian Health Network, which is a collaborative effort by the federal government and some health organizations across Canada, is considered by many as among the best in the world. The Network provides health promotion and disease prevention information to Canadians. The private sector, on the other hand, especially American firms, have entered this end of the market with highly specialized ventures providing dynamic, graphic information content. The criticism levelled at these private sector initiatives is whether their health-related information is objective and can be trusted, especially if the content is sponsored.
The report of the F/P/T Advisory Committee on Health Infostructure stressed that, despite public and private sector initiatives, there is still significant amounts of information missing that the public would like to access, for example for certain population groups.
The F/P/T Advisory Committee recommended the creation of a national portal for the Canadian public that would provide comprehensive and trusted health-related information to support self-care decision making. This portal should build on the success of the Canadian Health Network and be strategically linked to provincial and territorial website services to ensure consistency of health-related information across Canada. The national portal should allow better access by specific populations, which currently have restricted access to quality health-related information (e.g. Aboriginal Canadians, rural and remote communities, etc.).
The Committee believes that providing access to objective, trusted, health-related information can significantly improve the ability of Canadians to make health and health care decisions. Consistent with Principle Nineteen (Chapter 2), it is our view that initiatives enabling people to be responsible for their own health and to stay healthy must be given the highest priority. Based on this principle and on the observations by the F/P/T Advisory Committee on Health Infostructure, the Committee recommends:
That the federal government, in collaboration with the provinces/territories and stakeholders, develop a national health information portal, building on the success of the Canadian Health Network and the integration of provincial/regional portals.
As a matter of priority, investments into this national portal should be made in locations where the basic systems infrastructure is inadequate, especially in rural, remote and Aboriginal communities. This would greatly enhance the capacity of all Canadians to access timely and objective electronic health information.
Health research is about creating and applying new knowledge with respect to health and health care. Health research encompasses a full spectrum of activities that range from biomedical research, to clinical research, to health services research, and to population health research:
· Biomedical research pertains to biological organisms, organs, and organ systems. For example, this type of research would use animal or human tissues or cell culture to understand how the body controls the production of blood cells in the bone marrow, how those controls break down in leukemia, and how normal controls might be re-instated by treatment with drugs.
· Clinical research relates to studies involving human participants, healthy or ill. An example would include clinical trials on humans to test the toxicity and effectiveness of a possible new treatment for leukemia that has shown promising results in basic biomedical research, and then to compare the new drug with other drugs in terms of their net benefit to patients.
· Health services research embraces health care delivery, administration, organization and financing. An example might be research into the mechanisms for handling patients with leukemia, from the means for diagnosis, through their treatment in hospital, on an outpatient basis, or at home, to their long-term follow-up through hospital or community care.
· Population health research focuses on the broad factors that influence health status (socio-economic conditions, gender, culture, literacy, etc.). An example might be a study using large databases of personal health information gained from a number of sources to learn whether the incidence of leukemia is associated with environmental or other factors.
Health research is the source of new knowledge about human health, how to maintain optimal health, how to prevent, diagnose and treat disease, and how to manage our health care system. Health research leads to the development of new or improved drug therapy, treatment, medical equipment and devices and new ways of organizing and delivering health care. Health research also contributes to a better understanding of the complex interplay of the social, economic, environmental, biological and genetic determinants that affect our health and our susceptibility to disease.
The Committee was told that health research fosters the creation of knowledge-based employment, which in turn contributes to reversing the brain drain observed in the country. Overall, witnesses stressed that health research improves the personal and economic health of Canadians and enhances our international competitiveness:
Health research provides enormous economic, social and health care rewards to society. The jobs that are created by these investments are high-quality, well-paying, knowledge-based positions that generate worldwide recognition for Canadians. These investments also support the rejuvenation of academic institutions across the country. They help train new health professionals in the latest technologies and techniques and they provide important support for the health care delivery system in Canada. Most importantly, the results of these activities lead directly to better ways to treat patients, which ensures a healthier and more productive population.
The Committee also heard that health research could serve as a catalyst to regional economic development and that the health services innovations generated through health research activities could greatly contribute to enhancing the quality and sustainability of Canada’s health care system. As health research activity spreads out from the academic health science centres and government and into more community-based settings, we can anticipate that standards of care will improve, as health care providers engaged in health research will be better connected with the most recent information. Overall, health research provides tremendous opportunities for both economic and health care progress.
The Committee believes that Canada must actively engage in health research to capture its share of benefits. The Committee also strongly believes that the federal government has a critical role to play as a facilitator, catalyst, performer, consensus builder and co-ordinator in the overall effort to nurture excellence in health research. This chapter addresses a series of issues, including funding, partnerships and ethics, which we believe deserve close attention if Canada is to achieve the highest standard of excellence in health research.
As Table 1 shows, health research in Canada
is characterized by a complex network that involves a wide range of
disciplines and a multiplicity of performers carrying out their research
activities in a variety of locations. In
Canada, health research is performed by universities, teaching
hospitals, business enterprises, government, and non-profit organizations.
This research is financed from a variety of public, private,
Canadian and foreign sources.
THE CANADIAN HEALTH
§ Clinical Disciplines
§ Social Sciences and Humanities
§ Life Sciences
§ Cellular and Molecular Biology
§ Computing and Mathematical Sciences
§ Health Services
§ Academe (Universities, Teaching Hospitals, Research Institutes)
§ Physicians’ Practices
§ Community Organizations
§ Community Hospitals
§ Governments (Federal, Provincial, Departments, Funding Agencies)
§ Non-Government Organizations and National Voluntary Organizations
§ International Sources
The different stakeholders in health research collaborate with each other in various ways: government-university, university-industry, government-industry. In fact, the Committee was told that science is a continuum and the multiple components of health research cannot exist independently of the others. Each component has an important, albeit changing, research role to play in ensuring maximum health benefits for Canadians.
The federal government has always played an important role in health research as a funder, performer and user of research. The federal government financially supports health research carried out in universities, teaching hospitals and research institutes (extramural research); it performs health research in its own laboratories (intramural or in-house research); and, it utilizes the outcomes of health research carried out elsewhere. Moreover, the federal government has an important role to play in setting national priorities for health research.
The Committee agrees with a 1999 report of the Council of Science and Technology Advisors that health research performed, funded and used by the federal government must be of the highest quality. It must be demonstrated to meet or exceed international standards of excellence in science, technology and ethics.
The Committee was informed that, as the cost, complexity and pace of advancement in health research accelerate, individual organizations no longer have the resources or expertise to work in a vacuum:
Traditionally, investigators have worked in isolation, pursuing their own research agendas and living grant-to-grant. This scattered, ad hoc approach simply won’t work in today’s world when the complexity of science requires the pooling of resources.
At the third annual Amyot Lecture organized by Health Canada, Dr. Kevin Keough, Chief Scientist at Health Canada, stated that it is necessary to adopt an inclusive (or horizontal) approach to health research and to find new ways to partner – that is, to bring together multi-disciplinary teams of scientists from across the whole health research system to combine their intellectual, financial and physical resources in conducting the research required to better understand the complex and highly interconnected world in which we live. 
The Committee agrees with Dr. Keough that it is critical to sustain effective partnerships and to distribute the effort of individual partners in a manner that will maximize the output of Canadian health research. In our view, complementary and collaborative approaches to health research are not only feasible and cost-effective, but they also contribute to better research outcomes for all stakeholders. This overarching goal can only be met if the role of the federal government continues to adapt to the changing health research environment. In addition to being a performer, funder and user of health research, the federal government must become more active as a catalyst and a facilitator.
The Committee strongly believes that the federal government should assume leadership in Canadian health research and, therefore, we recommend:
That the federal government set, on a regular basis, national goals and priorities for health research in collaboration with all stakeholders.
That the federal government foster multi-stakeholder collaborations when performing, funding and using health research. This should contribute to capitalizing on the best available resources while minimizing overlap and duplication.
Dr. Keough stressed that, as a starting point, the federal government should encourage interchange of health research scientists between government, academia and the private sector. A freer flow of scientists would enhance the quality of Canadian health research, improve science and research advice to government, maximize the contribution of Canadian scientists to the whole health research community, and contribute to the renewal of the science base in all sectors. The Committee shares similar views and, therefore, we recommend:
That the federal government take a leadership role, through the Canadian Institutes for Health Research and Health Canada, in developing a strategy to encourage interchange of research scientists between government, academia and the private sector, including national voluntary organizations.
The Committee wishes to acknowledge the important role played by national voluntary organizations in health research. These organizations act as a key bridge at the national level between health research and its application through knowledge transfer of information to researchers, health care providers and the general public. It is the view of the Committee that, given the knowledge and experience these national voluntary organizations bring, as well as the significant proportion of the health research enterprise which they support, they must be included in the multi-stakeholders collaboration in health research.
Witnesses told the Committee that health research in Canada and throughout the world is currently undergoing a scientific revolution. They explained that this revolution in health research is fuelled by the ongoing advances in genomics, engineering and cell biology. Research in these scientific disciplines will have a profound effect on the detection, diagnosis and treatment of various genetically linked diseases. Elucidation of the physiological processes associated with various conditions will require years of efforts to identify the relevant genes and to determine how they interact.
We are in the midst of a profound global revolution being driven by our rapidly emerging understanding of the molecular basis of life, of human biology and of disease. Like prior revolutions in science, this revolution is being driven by the collision of diverse disciplines and approaches: genetics, molecular biology, the broader bio-sciences, [information technology] and computational methodologies, small molecules and surface chemistry, bioethics, epidemiology, health economics, and the social sciences and humanities. The pace of this health research revolution is still accelerating, driven by significant global investments by governments, industry and philanthropy.
As the human genome project approaches completion, the next challenge is to understand the function of the 30,000-40,000 genes that humans appear to possess. These genes encode the entire protein set or proteome estimated at 2 million. Thus, the next frontier in biology appears to be proteomics, the cataloging and functional description of all proteins in living organisms, which is far more complex and promising than genomics.
Similarly, advances in biomedical engineering and miniaturization on the molecular scale will push development of more sophisticated devices for diagnosis and therapy – targeted delivery of drugs, biological testing, molecular imaging, and tissue and organ repair. Canada has a real opportunity to become a world leader in this field of “nanotechnology” or “nanomedicine”.
The study and use of stem cells is another good example of the potential impact that health research can have on health and health care. Stem cells have the unique property, whatever their origin, of becoming specialized cells. Currently, both the research community and related stakeholders are very enthusiastic about the potential of stem cells, both from embryonic and adult sources. It is anticipated that research on these cells will lead to treatments for serious diseases such as Parkinson’s, Alzheimer’s, diabetes and spinal cord injuries. It is also widely believed that these cells can ultimately be manipulated to grow into virtually any tissue or organ thus providing much needed organs for transplant.
Recent research has been successful in programming human embryonic stem cells into producing insulin. Normally, this function is performed by specialized pancreatic islet cells. Should this treatment prove to be able to provide a cure for diabetes, which is presently being treated by regular injection of insulin, it will not only improve the quality of life for the individual, but will also ease the economic burden of disease. In a different study, stem cells isolated from the skin of animals were coaxed into becoming neural, muscular and fat cells.
Other areas where the scientific revolution has a definite impact are chemistry and computer science where advances in molecular modelling combined with synthetic chemistry change the way novel drugs are discovered. Bioinformatics and robotics are also areas that will benefit health research.
The scientific revolution in health research is not limited to basic and biomedical research; it is also creating tremendous opportunities for research into health services and population health. More than ever before, research is undertaken in Canada and abroad to find new ways of delivering quality care and to understand the implications of the interaction of the determinants that affect the health of a population.
At the third Amyot Lecture, Dr. Keough stressed that advances in health research, and the need for governments and individuals to accommodate them, will continue to accelerate. This means that governments must be able to both perform and rely on good science, which is based on sound research harnessed for the public good. The government’s effectiveness in integrating progresses from emerging areas such as biotechnology and nanotechnology depends on this principle.
The Committee agrees with Dr. Keough that it is imperative for Canada to take up the challenges wrought by the scientific revolution. We are convinced that countries with a strong health research network are more capable of translating advances and innovations into cost-effective health services, modern and internationally competitive policy and regulatory frameworks, new or adaptive products, and new health promotion activities. An energetic health research environment contributes to improved health, higher quality of life, and an efficient health care system. This in turn engenders public confidence, a vibrant business environment and strong economy.
Along with Dr. Keough, the Committee believes that good science is good economics and that the government has a crucial role in maximizing the gains for Canada and its citizens. Clearly, the costs of doing good science are high; but the costs of not doing it are even higher. These scientific developments are rapidly expanding and there is fierce competition in the field. Along with numerous witnesses, the Committee is convinced that Canada cannot afford to fall behind. The potential pay-off is a fast and economically beneficial transfer of knowledge and its conversion into tangible benefits for the Canadian population.
It is the opinion of the Committee that such a formidable challenge can be met only through a concerted effort by government, industry, academia, non-governmental organizations and international organizations. Each of these partners has its own specific role. However, coordination and support should be provided by the federal government, through its agencies and departments, especially CIHR and Health Canada. Therefore, the Committee recommends:
That the federal government, through both Health Canada and the Canadian Institutes of Health Research, coordinate and provide resources to ensure that Canada contributes to and benefits from the scientific revolution to maximize the economic, health and social gains for Canadians.
5.3 Securing a Predictable Environment for Health Research
The Phase Two report of the Committee
showed that the federal government has had a long tradition in financing
The most recent estimates by Statistics Canada indicate that the
majority (some 79%) of federally funded health research is “extramural” as
it takes place in universities and hospitals (68%), private non-profit
organizations (6%), and business enterprises (4%).
The principal federal funding body for health research is the Canadian Institutes of Health Research or CIHR. In fact, CIHR is the only federal entity whose budget is entirely devoted to health research. Its creation in 2000 involved a major evolution of the mandate of the Medical Research Council of Canada (MRC) and incorporation of the National Health Research and Development Program (NHRDP), formerly Health Canada’s main financing instrument for extramural health research. Despite the creation of CIHR, Health Canada is still involved in the financing of some extramural health research in a wide range of fields (children’s health, women’s health, Aboriginal health, etc.).
There are, also, a number of federal research-oriented bodies whose funding focuses entirely on health-related research. These include namely the Canadian Health Services Research Foundation (CHSRF) and the Canadian Coordinating Office for Health Technology Assessment (CCOHTA). Many feel that for a country of the size of Canada, there are too many federal funding organizations.
In addition, there are several secondary sources of extramural federal health research funding. More precisely, the federal government is responsible for a number of research councils, agencies and programs that devote (to various extents) a portion of their budget for health-related research. These include the Natural Sciences and Engineering Research Council (NSERC), the Social Sciences and Humanities Research Council (SSHRC), the Canada Foundation for Innovation (CFI), the Canada Research Chairs (CRCs), and the Networks of Centres of Excellence. The federal government has also funded Genome Canada, a not-for-profit corporation dedicated to develop and implement a national strategy in genomic research.
The remainder of the federally funded health research (some 21%) is “intramural” or “in-house” research, that is research conducted in federal government facilities. Federal facilities in which health-related research is performed include Health Canada, Statistics Canada, the National Research Council, Human Resources Development Canada, Agriculture Canada, Environment Canada (in partnership with Health Canada) and the Canadian Food Inspection Agency.
The federal government has, on many occasions, demonstrated its commitment to health research. The Committee applauds the high priority for research given in the 2001 Speech from the Throne and particularly its announcement to increase funding for health research:
Our government’s overriding goal is nothing less than branding Canada as the most innovative country in the world – as the place to be for knowledge creation; where our best and brightest can make their discoveries; where the global research stars of today and tomorrow are born; becoming the magnet for new investments and new ventures.
(…) The Government of Canada will (…) provide a further major increase in funding to the Canadian Institutes of Health Research, to enhance their research into disease prevention and treatment, the determinants of health, and the effectiveness of the health care system.
The Committee also recognizes the creation of CIHR as a major achievement in health research. We laud the increased funding for CIHR announced in the December 2001 Budget Speech, despite the severe financial pressures the federal government faces. In addition, the creation of, and funding for, the Canada Foundation for Innovation in 1997, followed by the Millennium Scholarships, the Canada Research Chairs, and Genome Canada, are clear indications that health research and innovation are integral to public health-related policy in Canada.
Throughout the hearings, the Committee was told that while the increase in federal funding represents significant support for health research, Canada still does not compare favourably with other industrialized countries in this regard. In fact, the role of national government in financing health research, expressed in purchasing power parity (PPP) per capita, is much higher in the United States, the United Kingdom, France and Australia than in Canada. For example, as stated in the Committee’s Phase Two report, the American government provided in 1998 four times more funding per capita to health research than did the Canadian government.
Witnesses unanimously recommended that the federal government’s share of total spending on extramural health research be increased to 1% of total health care spending in Canada, from its current level of approximately 0.5%. This could involve increasing CIHR’s current budget to $1 billion from the current level of $560 million. Additional resources should also be devoted to federally performed health research (discussed in the following section). Overall, increased investment in extramural and in-house health research would bring the level of the federal contribution to health research more in line with that of national governments in other OECD countries. More importantly, this would help maintain a vibrant, innovative and leading edge health research industry.
Another concern brought to the attention of the Committee related to the long-term nature of research in contrast to existing budgetary program planning. High quality research is very competitive internationally and requires long-term commitments. Young researchers, on whom Canada’s future in research depends, commit their careers on the basis of their perceptions of the long-term environment for research. Canada will not attract or keep excellent people without providing an excellent environment for research. Research pays little attention to national borders. The world recognizes excellence, and competes vigorously for it.
The Committee strongly supports the view that health research money is money to support the best and the brightest minds. At least two-thirds of funds for health research go to salaries and training stipends for highly qualified and motivated researchers, research assistants, technicians, research trainees, etc. Ultimately, Canada’s challenge in health research is a challenge to attract and retain outstanding people.
The role of the federal government is central to this competition for excellent researchers. In particular, CIHR is the long-term source of research funds for the health research activities stimulated by the Research Chairs, the Canadian Foundation for Innovation, and Genome Canada, all of which are adding greatly to Canada’s capacity for excellence in research. CIHR is also an essential partner for research stimulated by the many health research charities.
Overall, the Committee believes that the federal government must establish and maintain long-term stability in the Canadian health research environment. Providing an adequate and predictable level of funding is a necessary prerequisite. Health research is a long-term investment; many research projects span a researcher’s whole career, and grants are usually awarded for three- to five-year terms, which are simply not consistent with the one-year-at-a-time budget allocation to CIHR. Therefore, the Committee recommends
§ Increase, within a reasonable timeframe, its financial contribution to extra-mural health research to achieve the level of 1% of total Canadian health care spending.
§ Set and adhere to clear long-term plans for funding health research, particularly through the Canadian Institutes of Health Research. More precisely, the federal government should commit to a five-year planning horizon for the CIHR budget.
§ Provide predictable and appropriate investment for in-house health research.
A report by the Council of Science and Technology Advisors identified a clear need for the federal government to perform in-house research. This report stressed that the federal government must have the an adequate research capacity to deliver the following key roles:
· Support for decision making, policy development and regulations.
· Development and management of standards.
· Support for public health, safety, environment and/or defence needs.
· Enabling economic and social development.
In other words, the ability of the federal government to set policy and enforce regulations requires it to have an appropriate in-house research capacity. In addition, the government needs to have access to the highest possible quality scientific and technological information in a time frame that meets its needs. Failure to use the best available data and analysis could expose the government to liabilities for damages caused by those decisions.
The major key player in federal intramural health research is Health Canada, for which this function is critical to the fulfillment of its mandate. The department is mandated to help the people of Canada maintain and improve their health and to ensure their safety. Thus, in addition to access to top-quality scientific and technological information, Health Canada must obtain advice to set policy and enforce regulations. The required in-house research capacity includes expertise in:
· the state and spread of disease;
· ensuring the safety of food, water and health products, including pharmaceuticals;
· air quality issues; and,
· fulfilling health promotion obligations.
To undertake these responsibilities, Health Canada’s researchers must possess independent knowledge and skills over a wide range of scientific disciplines, ranging from the behavioural sciences to cellular and molecular biology. In addition, Health Canada must have an adequate in-house capacity to assimilate, interpret and extrapolate the knowledge obtained from other health research partners. Finally, the department must be able to draw widely on expertise and facilities that are not available in-house.
Overall, the Committee learned that Health Canada has a unique role. In order to meet its mandate, the department must be able to provide the best possible independent science advice related to its legislated responsibilities, to undertake a wide range of scientific activities related to its role as regulator and policy advisor, and to provide evidence-based health services and programs. This unique obligation requires Health Canada to have the necessary science and research capacity to fulfill these three functions.
The Committee feels it is important to acknowledge that Health Canada has taken an important step in ensuring, through the appointment in 2001 of a Chief Scientist, that it possess the ability to meet its mandate. The Chief Scientist and his office play a pivotal role in bringing leadership and coherence to Health Canada’s scientific responsibilities and activities by championing the principles of alignment, linkages and excellence espoused by the Council of Science and Technology Advisors.
The Committee strongly believes that there is a clear need for the federal government to perform health research and that it must have the capacity to deliver its mandate. The Committee also acknowledges the importance for Health Canada of partnering with stakeholders outside of government when necessary. Therefore, the Committee recommends
That Health Canada:
§ Be provided with the financial and human resources in health research that are required to fulfill its mandate and obligations.
§ Engage actively in the establishment of linkages and partnerships with other health research stakeholders.
5.4 Enhancing Quality in Health Services and in Health Care Delivery
As indicated in Chapter One of this report, the Canadian health care delivery system is facing a very serious situation, marked by rising costs, a high degree of dissatisfaction and high expectations. While many recommendations for change to the publicly funded health care system have been made over the years, most of them have not been based on scientific evidence, but rather have been grounded on anecdotal evidence or political posturing. For these reasons, research on all aspects of Canada’s publicly funded health care system is, at the present time, very critical for health care policy makers and managers.
Areas in need of more research are varied and include:
· health promotion policies
· disease and disability prevention strategies (at both the individual and population levels)
· determinants of health
· approaches to primary care management
· new modes of remuneration for health care providers and institutions
· decision-making by health care providers and users
· organizational care delivery models
· health care policy management
· health care resources allocation
· impact of selected areas of privatized health care
· pharmaco-economics, and
· assessment and utilization of health care technology and equipment.
Clinical research and the involvement of health care providers themselves in health research are key elements in ensuring that fundamental research is translated into better health and health care. Clinical trials and large-cohort population health research studies are under-supported in Canada, in part due to the large, long-term financial commitment that is required before such studies can be launched. Urgent investment in training and subsequent career support is needed for clinician investigators in Canada. Harassed by ever increasing demands for clinical service, they find it increasingly difficult to remain competitive in competitions for grants and awards.
In Canada, a wide range of organizations are involved in health services research. It is the view of the Committee that, at this critical time for our health care delivery system, it is essential that this type of research be well funded and that these research centres and their investigators take part in the present debate about the future structure of the Canadian hospital and doctor system and about how the growing gaps in health care coverage can be closed.
Moreover, many studies have shown that there is a major gap between new knowledge and its application in every day medicine. For example, only 46% of elderly patients were given pneumococcal vaccine, though it is the group most at risk for suffering from such infections. Aspirin, although recommended for all adult diabetic patients, was prescribed in only 20% of cases, and counselling on HIV transmission was given to less than 3% of adolescents during physician’s office visits. In addition, wide variations in practice patterns and outcomes persist across regions as well as across provinces. The Committee believes that the federal government, given its unique role in health research, should commit a significant investment to promoting, in partnership with the provinces and territories, the adoption of research findings in clinical practice. This must be done while continuing to support new research on priority health issues and the development of new tools, so that in the future this knowledge and the new tools can be translated into and implemented to produce improved health and enhanced health care.
Overall, the Committee acknowledges that more health research should be undertaken in order to enhance quality in health services and in health care delivery. Therefore, we recommend:
That the federal government, through the Canadian Institutes of Health Research, Health Canada and the Canadian Health Services Research Foundation, devote additional funding to health services research and clinical research and that it collaborate with the provinces and territories to ensure that the outcomes of such research are broadly diffused to health care providers, managers and policy-makers.
There are many groups in Canadian society that have, for numerous reasons, less immediate access to health services appropriate to their specific needs. Examples include individuals with mental health problems, individuals with addiction problems, people with physical disabilities, some ethnic minorities, women in difficult circumstances, people living in rural and remote communities, the homeless and the poor. The Committee acknowledges that there is an urgent need in Canada to support cross-disciplinary health research that will provide new evidence on the diverse factors that influence health status, and on approaches to improving access to needed health care for vulnerable groups. CIHR has recently set up a strategic plan through three of its Institutes to study this crucial problem, but more resources are needed. Therefore, the Committee recommends:
That the federal government, through the Canadian Institutes of Health Research and Health Canada, provide additional funding to health research aimed at the health of particularly vulnerable segments of Canadian society.
In Volume Four of its health care study, the Committee stated that the health of Aboriginal Canadians is a national disgrace. There is a disproportionately, and completely unacceptable, large gap in health indicators between Aboriginal and non-Aboriginal Canadians. Aboriginal peoples experience much higher incidence of many health problems, including: significantly higher rates of cancer, diabetes and arthritis; heart disease among men; suicide among young men; HIV/AIDS; and morbidity and mortality related to injuries. Infant mortality rates are twice to three times the national average, with high rates of foetal alcohol syndrome and foetal alcohol effects (FAS/FAE), and poor nutrition. Approximately 12% of Aboriginal children have asthma, in comparison with 5% of all Canadian children. This last trend is attributable, at least in part, to environmental health issues, such as the presence of moulds in houses.
The Committee believes that research is perhaps the most important element that will help improve the health status of Aboriginal Canadians. In our view, the creation of CIHR’s Institute of Aboriginal Peoples’ Health is an important step in this direction. Health Canada, which delivers numerous programs and services to First Nations and Inuit communities, needs to strengthen its research capacity as well as its capacity to translate health research into effective public policy. In particular, Health Canada requires a strong research capacity to:
· compile and analyze available population-based information to identify trends, emerging issues, and differences across geographic regions or communities;
· review programs and services to identify the most effective practices in First Nations and Inuit communities and to assess timely progress in addressing key health issues; and
· maintain and augment the capacity to analyze research both nationally and internationally, and integrate best practice into policy and program development, implementation and evaluation.
Therefore, the Committee recommends as a matter of urgency:
That the federal government provide additional funding to CIHR in order to increase participation of Canadian health researchers, including Aboriginal peoples themselves, in research that will improve the health of Aboriginal Canadians.
That Health Canada be provided with additional resources to expand its research capacity and to strengthen its research translation capacity in the field of Aboriginal health.
Research into the field of health in developing countries is also of concern. The Committee learned that very little research activity is directed towards health problems that affect developing countries. In fact, data suggest that less than 10% of health research is devoted to diseases or conditions that account for 90% of the global disease burden.
The primary causes of morbidity and mortality in developing countries can be grouped under four general areas: malnutrition, poor sexual and reproductive health, communicable diseases, and non-communicable diseases including injuries. A recent report by the World Health Organization shows that long-term economic growth is impossible where large numbers of people are malnourished, sick or dying.
It is the view of the Committee that, given its expertise and excellence in health research, Canada should assume a leadership role in this area. The federal government has taken a step in the right direction. In a first-ever collaborative effort, four Canadian government organizations have joined their forces to formalize a shared commitment to address the problems of global health through research. The Canadian International Development Agency (CIDA), CIHR, the International Development Research Centre (IDRC) and Health Canada have formed the Global Health Research Initiative. Not only will this joint undertaking allow the four partners to operate their programs and research more effectively, it will also contribute to a great humanitarian cause – the health protection of citizens of all countries, including Canadians. This is the beginning; much more needs to be done. Therefore, the Committee recommends:
That the federal government provide increased resources to the Global Health Research Initiative.
One outcome of health research is the creation of new knowledge. New knowledge is in itself of great value to society but the overall impact of health research is maximized when new knowledge is translated into social and economic benefits. Commercialization of health research outcomes represents one way to achieve this knowledge translation.
Commercialization of health research can happen at many different stages of research and each stage faces different challenges. For example, one of the main challenges facing commercialization of academic health research (occurring in universities and hospitals) is that their early stage of development makes the investment of capital by private sector very risky, thus speculative. By contrast, once a product is marketable, such as the late stage clinical trials (mainly performed by large research-based pharmaceutical firms), the main challenges relate to intellectual property and the patent regime, as well as to approval and monitoring of drugs. Commercialization of health research outcomes brings numerous benefits including:
· improved health, resulting in a more productive workforce;
· enhanced health services quality;
· increased efficiency in health care system delivery;
· expanded research funding leveraged from commercialization and research partnerships;
· enhanced job creation with newly formed companies;
· and greater economic activity from the manufacturing, marketing and sales of new health care products and services.
In its brief to the Committee, the Council for Health Research in Canada indicated that spin-off biotechnology companies formed by CIHR-funded scientists are an important by-product of public investment in health research:
For instance, 23 companies have been formed at the University of British Columbia employing 732 people. At McGill, 18 companies have been formed employing 392 people. At the University of Ottawa, 10 companies have been formed employing 459 people. Such companies cannot flourish without public investments to fund a steady discovery pipeline.
Visudyne is one example of Canadian health research that has produced some powerful advances in health care. The drug, which is approved for use in over 30 countries, is the only approved treatment for age-related macular degeneration, the leading cause of age-related blindness. This treatment was developed at the University of British Columbia (UBC) and was funded, in part, by the federal government. UBC assisted in the start-up of QLT Inc. to commercialize this product that has head offices in Vancouver, employs over 350 people and has a market capitalization of $1.5US billion.
Another example is 3TC, the only inhibitor of HIV reverse transcriptase with few or no side effects and a common component of treatment for HIV/AIDS, which also arose out of federally funded research performed in Montreal. BioChem Pharma Inc., prior to its acquisition by Shire Pharmaceuticals plc. (based in the United Kingdom), had head offices in Montreal, employed 278 people, and had a market capitalization of $3.7US billion.
These examples illustrate the potential of health research to treat disease, create employment and generate economic benefits for Canada. While many academic technologies are licensed to foreign companies, it is reasonable to expect that value should be created and retained in Canada wherever possible and appropriate when the federal government has made investments in health research.
As stated in Section 5.2, “good science is good economics”. However, during his testimony, Dr. Henry Friesen, Team Leader of the Western Canadian Task Force on Health Research and Economic Development, told the Committee that the conditions are not presently in place to enable publicly funded health research to maximize the returns to Canadian taxpayers. In the opinion of this Task Force, the capacity for research commercialization is sub-optimal and clearly unacceptable.
Similar findings were presented in a 1999
report published by the Advisory Council on Science and Technology (ACST) and
prepared by its Expert Panel on the Commercialization of University Research.
The Expert Panel made the
case that research results from federal funding of university research, where
there is commercialization potential, should be managed as an asset that can
return benefits to the Canadian economy and Canadian taxpayers.
The Expert Panel also showed that the United States has a much better
track record in commercialization of university-based research than Canada,
despite a growing private sector involvement in funding research at Canadian
Most major research institutions (universities and research hospitals) in Canada have in-house technology commercialization offices that are funded by university sources and, in cases of successful offices, by revenue derived from operation. Currently, the expenses associated with commercialization activities are not covered by direct federal research funding. The Committee learned that the vast majority of these technology commercialization offices have costs that exceed their revenue. They are operated as a cost centre and not as a profit centre for the institution. However, while their function is not critical to the research enterprise (creation of new knowledge), an argument could be made to include costs of operating these offices in the calculation of indirect research costs since technology commercialization is a research-related activity.
The question of funding indirect costs in Canadian research by the federal granting agencies has been one of contention in recent years. It has been recognized as one element to explain the lower level of competitiveness of Canadian researchers. Indirect costs are those expenses associated with administration, maintenance, commercialization and the salary of the principal investigator that is attributable to the research project. The ACST in its 1999 report and subsequent publications has made the recommendation that the federal government increase its investment by supporting the indirect costs of sponsored research. Similarly, the brief of the Council for Health Research in Canada stressed:
[The] indirect costs of research must be funded in order to provide a cutting-edge research environment that will fully realize the benefits of the government’s Innovation Agenda. (…) The Council believes it should be a priority for the government to develop a specific, long-term plan to address this issue as soon as possible.
The Committee acknowledges that, in its December 2001 Budget, the federal government provided a one-time investment of $200 million through the granting councils to help alleviate the financial pressures that are associated with the rising indirect costs of research activities, including commercialization. We both hope that universities and research hospitals will use some of these funds to improve their commercialization abilities, and that the federal government will make this investment permanently recurrent.
The Committee agrees with witnesses and recent reports that there is a need to find ways to maximize the returns to Canadians from the commercialization of federally funded health research. We believe that the federal government should establish the necessary conditions to enable researchers and those technology commercialization offices providing support and services to researchers to perform to their full potential in commercializing the results of federally funded health research.
Further, the Committee believes that CIHR, Canada’s premier vehicle for funding health research with a legislated mandate to translate knowledge into improved health, is uniquely positioned to assess the recommendations made by the Western Canadian Task Force, the ACST’s Expert Panel and other studies on technology commercialization as they apply to health research. We believe that CIHR should use these reports as the basis for developing and delivering on an innovation strategy that considers programs, policies and people. In our view, such a strategy would see CIHR support and strengthen the capacity of academic technology commercialization offices to maximize the transfer of technologies to market, thereby creating of Canadian companies and jobs and enhancing Canada’s innovation capacity. In addition, we believe that this innovation strategy must be developed within a framework that includes governing principles of public good and benefit to Canada so that any strategy to maximize the social and economic impact does not threaten academic freedom or influence the direction of research or the delivery of health care. Therefore, the Committee recommends:
That the federal government require an explicit commitment from all recipients of federally funded health research that they will obtain the greatest possible benefit to Canada, whenever the results of their federally funded research are used for commercial gain.
That the Canadian Institutes of Health Research, while not ignoring the social value of health research that does not result in commercial gain, seek to facilitate appropriate economic returns within Canada from the investments it makes in Canadian health research, whenever the results of investments in Canadian health research are used for commercial gain. In doing so, CIHR should develop an innovation strategy aimed at accelerating and facilitating the commercialization of health research outcomes.
That the federal government invest additional resources to enhance the output of Canadian health researchers and strengthen the commercialization capacity of performers of federally funded health research through CIHR’s innovation strategy. This new funding would be additional to the current health research investment. In particular, the funding of the indirect costs of research by the Canadian granting agencies should be made permanent. Health research performers should be made accountable for the use of these commercialization funds.
One aspect of the commercialization of health research outcomes that generated controversy recently is the issuance of patents for higher life forms. This subject goes deeply into ethical, intellectual property, and economical issues. Although these questions are highly relevant to Canadian health research and the work of this Committee, they are debated elsewhere. Indeed, the Canadian Biotechnology Advisory Committee (CBAC) has been mandated by the federal government to provide advice on this crucial issue. The CBAC published an interim report on the subject at the end of 2001 where it recommended that human beings at all stages of development, are not patentable. Further, the report recommended that a systematic research program be undertaken to assess the impact of biotechnology patents on various aspects of health services. It is clearly an issue that deserves serious consideration, but is beyond the scope of this report.
The preceding sections have demonstrated Canada’s growing excellence in, and high priority for, health research. However, history has shown that the pursuit of new knowledge in health research can lead, for example, to abuse of the people who are involved as the subjects of research, to invasions of privacy, and to abuse of animals. In various ways, numerous reports have emphasized that new knowledge must not be gained at the expense of abuse of humans and other life forms, and that excellence in health research requires excellence in ethics.
But what is ethics? Laura Shanner, Professor at the University of Alberta, told the Committee that “ethics” is a “systematic, reasoned attempt to understand and make the best possible decisions about matters of fundamental human importance.” When we refer to ethical issues informed by biological knowledge in medicine, we refer to “bioethics”. Dr. Nuala Kenny, Professor of Pediatrics at Dalhousie University (Nova Scotia), defined bioethics as follows:
Bioethics is a particular understanding of ethics that brings the discipline of philosophy to assist in making value-laden decisions. It is about the right and the good. It is a practical discipline. Bioethics is ethics in the realm of the biosphere, human biology. It is actually broader than human health, but most people use it in that context.
It asks how, in a pluralistic society, do you lay out the values, the issues and the interests at stake when making a decision about the right and the good, generally about an individual patient situation. Then, how do you assist the relevant parties in establishing some kind of priority, so that if there are competing goods or competing harms, you make your choices in a responsible way.
In many fields, difficult decisions often involve consideration of numerous factors, each implicating different – and often conflicting – values, principles, viewpoints, beliefs, expectations, fears, hopes, etc. When facing such difficult decisions, people may reach different conclusions not only because they consider different factors, but also because they weigh them against each other in different ways. The practical effect of the discipline of ethics is to help those who face complex decisions to identify the inherent values and principles, to weigh them against each other, and to come to the best possible decision. Though based on strong theoretical foundations, ethics in health care and health research deals with real life situations.
Because research seeks constantly to expand the forefront of knowledge, it poses the most challenging questions of ethics. The purpose of this section is to survey some of the major areas of research ethics in terms of the policies and mechanisms now present and/or needed in Canada, to ensure that health research is carried out in a manner that meets the ethical standards of Canadians.
Health research must involve humans as research subjects. While research with other life forms can provide much essential knowledge, in the end only research directly on human beings can tell us, for example, whether a potential new approach to prevention, diagnosis or treatment of disease is safe enough to use in humans, whether it actually helps patients, what its side effects are, and whether it is better than a treatment that is already available.
Research subjects, often patients with diseases whose treatment is under study, bear the risks of the research so that others may gain from the knowledge that research is intended to provide. Research involving humans poses many risks: abuse of people, misuse, exploitation, breaches of privacy, confidentiality, etc. Because health research raises such a wide range of issues, an international consensus has developed over the last 50 years or so. This international consensus, which started with the Nuremberg Code (1947) and the Declaration of Helsinki (1964, revised in 2000), requires that the ethical aspects of any research project involving humans be reviewed and approved, with modifications if needed, by an appropriately constituted ethics committee (in Canada called “Research Ethics Board” or REB) before the research project is started.
The Research Ethics Board “is a societal mechanism to ensure the protection of research participants.” REBs are multidisciplinary local institution-based boards, independent of the investigator and research sponsor, established to review the ethical standards of research projects within their institutions. They have the power to approve, reject, request modifications to, or terminate any proposed or ongoing research involving human subjects. In effect, the REB attests, for each research protocol, that the proposed research, if it is carried out in the manner agreed to by the REB, meets or exceeds standards of ethics that Canadians expect.
The dominant national policy for the ethics of research involving humans, the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS), was published by CIHR, the SSHRC and NSERC in 1998. The TCPS followed earlier policies (MRC, 1978, 1987, and SSHRC, 1976). The Panel and Secretariat on Research Ethics, launched in November 2001 by the three federal research funding agencies, are responsible for coordinating the evolution and interpretation of the TCPS. The objective is to keep the TCPS up-to-date in response to the rapidly evolving advances in knowledge, research and technology.
The Tri-Council Policy Statement has been adopted by academic institutions (where the majority of health research involving humans is carried out) and by some governmental departments and agencies, including the Department of National Defence (DND) and the National Research Council (NRC).
Health Canada is establishing its own Research Ethics Board, which will also use the TCPS, to assess the ethical acceptability of in-house research, research that is contracted to non-Health Canada researchers which requires ethical review and research applications to CIHR or other funding agencies. Health Canada has also adopted the International Conference on Harmonization (ICH) guidelines applying to clinical trials involving the participation of human subjects.
Since the 1970s, in accord with national policies governing ethics in research involving humans, some 300 local REBs in Canada have been established in a variety of settings including universities, government laboratories, community organizations and teaching and community hospitals. In many teaching hospitals, at least 50% of the research protocols reviewed by REBs are clinical trials that are sponsored by industry for purposes of testing new pharmaceutical interventions in human health so as to meet the regulatory licensing requirements of Health Canada and the USA Food and Drug Administration. In addition, some company-based and private for-profit REBs have developed over the last few years to allow REB review of privately sponsored research outside academic institutions, and hence without access to local REBs. In Alberta, all physicians who are not covered by an institutional REB are required to use the REB of the Alberta College of Physicians and Surgeons. Newfoundland is moving towards establishing a single REB for all health research in the province.
In 1989, the National Council on Ethics in Human Research (NCEHR) was created by the MRC with the support of Health Canada and the Royal College of Physicians and Surgeons of Canada. NCEHR works to foster high ethical standards for the conduct of research involving humans across the country by offering advice on the implementation of the TCPS, primarily through educational activities and site visits to local REBs. NCEHR is now funded by CIHR, SSHRC, NSERC, Health Canada and the Royal College of Physicians and Surgeons.
The Tri-Council Policy Statement, in effect Canada’s national statement of policy for ethical conduct in health research involving humans, appears to be consistent with world standards. For the most part, REBs in Canada seem to operate to a high standard, building on more than two decades of experience and the dedication of many people across the country. However, the Committee learned that serious gaps have been identified in a number of reports released in recent years by NCEHR and CIHR, as well as by the Law Commission of Canada. A summary of the main issues or gaps identified in these reports is presented below:
· Although the Tri-Council Policy Statement sets very high standards, there is currently no oversight mechanism to ensure compliance with these standards. On the one hand, there is no process of certification, accreditation or regular inspection of the research ethics review procedures performed by REBs. On the other hand, and though more REBs are starting to address this issue, few monitor the conduct of research once a research protocol has been approved. In other words, REBs often have limited knowledge of what happens after they have approved a research protocol.
· Some concerns were raised about real or perceived conflicts of interest by researchers or institutions. Though international consensus suggests that REBs would be established within research institutions, and that the work of REBs requires close collaboration with other institutional responsibilities, REBs must be able to operate free from institutional or researcher pressures.
· Similarly, a lack of public oversight of private REBs that act independently or through Contract Research Organizations hired by drug companies raises concerns about their independence and conflicts of interest.
· There is a basic need for more resources for REBs. As the work becomes increasingly complicated with globalization, technology and commercialization, REBs are struggling to find committee chairs or even members.
· There are currently no standard training requirements for Canadian REB members and researchers in research ethics. However, in the absence of similar Canadian standards, Canadian researchers must meet American educational standards for American funded health research involving human subjects.
· The current ethics review processes are “producer-driven” rather than “consumer-driven”. In other words, there is a lack of representative participation in governance on the part of research subjects.
· There is an urgent need for empirical research on the effects of health research on human subjects as well as on the effectiveness of the ethics governance procedures.
To sum up, the governance, transparency and accountability of the ethics review processes in Canada need to be improved:
(…) we were surprised to see how substantial the gaps were between the ideals expressed in policy and the ground arrangements for accountability, effectiveness and the other criteria for good governance.
The Committee agrees with many reports that the central concern for Canada is the public accountability of the overall processes for assuring the ethics of research involving humans. We recognize the excellent work that has been done across Canada by dedicated people in many environments who have strived to ensure that health research involving human subjects meets the highest standards of ethics, and we are confident that the standards achieved in Canada are as good as any in the world. Indeed, the report released by the Law Commission of Canada stated:
We are also very much impressed with the calibre of scholarly, ethics and legal expertise represented on many REBs. And, at a general level, Canadians scholars are prominent internationally in research regarding legal and ethical aspects of human subjects research.
However, the Committee believes that the present varied structures and approaches to health research ethics are inconsistent with the public accountability that an area of this importance requires. Accordingly, we urge the various leading stakeholders of health research involving human subjects to work together to develop a governance system for health research involving human subjects that can meet the following objectives: the promotion of socially beneficial research; the protection of research participants; and the maintenance of trust between the research community and society as a whole. This initiative should involve Health Canada, CIHR, other federal funding agencies, the Panel and Secretariat on Research Ethics, industrial research sponsors, research institutes, health professional licensing bodies and associations, NCEHR, the newly created Canadian Association of Research Ethics Boards, etc. Therefore, the Committee recommends:
That Health Canada initiate, in collaboration with stakeholders, the development of a joint governance system for health research involving human subjects for all research that the federal government performs, that it funds, and that it uses in its regulatory activities.
That Health Canada, in the development of this ethics governance system, regard the following components as essential to progress:
§ Work initially on all (health) research that the federal government performs, funds, or uses in its regulatory activities, to develop an effective and efficient system of governance that will become accepted as the standard of care across Canada;
§ Give prime importance in the governance system to effective education and training mechanisms for all who are involved in research and research ethics, with certification as appropriate to their different responsibilities;
§ Develop standards, based on the Tri-Council Policy Statement, the International Conference on Harmonization guidelines applying to clinical trials involving human subjects, and other relevant Canadian and foreign standards, against which research ethics functions or Research Ethics Boards can be accredited or certified as meeting the levels of function that are consistent with the expectations of Canadians and with those in other countries;
§ Ensure that the Tri-Council Policy Statement is updated and is maintained at the forefront of international policies for the ethics or research involving humans;
§ Remove inconsistencies between the various policies under which research involving humans is now governed, and make Canadian standards consistent with those of other countries that affect Canadian research;
§ Establish an accreditation or certification process for research ethics functions that is at arm’s length from government, but clearly accountable to government;
§ Develop the governance system through open, transparent and meaningful consultation with stakeholders.
Because animals are biologically very similar to humans, animals are used in research to develop new biological knowledge that has a high chance of applicability to the human condition. However, because animals are not identical to humans, new knowledge that arises from research with animals must be tested in humans before it is applied to human health.
Ethical concerns about the use of animals by humanity, particularly their use in research, have been recognized since the 19th century, especially in England. In Canada, these concerns caused MRC and NRC to undertake studies leading in 1968 to the creation of the Canadian Council on Animal Care (CCAC). Currently, CCAC receives 87% of its $1.2 million budget from CIHR and NSERC to cover CCAC services to the research institutions that they fund. CCAC obtains the rest of its revenues from fees for service charged to governmental and private institutions.
CCAC awards the Certificate of Good Animal Practiceâ to institutions that it determines are in compliance with its standards. Compliance is determined through site visits by assessment panels. CIHR and NSERC make participation in the CCAC program mandatory for all those who wish to receive their research funding and inform institutions that they will withdraw funds from institutions that CCAC states are not in compliance with its standards. The CCAC reports that institutions generally comply with its recommendations.
In its brief to the Committee, the Coalition for Biomedical Health Research stated that CCAC standards are recognized both nationally and internationally:
(…) research that complies with CCAC guidelines and policies constitutes ethically sound and responsible activity.
(…) CCAC’s nationally and internationally accepted standards (…) provide the needed balance between the protection of animals and the benefits that are gained by the use of animals in science.
The formal structure of the CCAC, along with its monitoring program, is regarded by many, in Canada and abroad, as an optimal model enabling it to work effectively at arm’s length from and with government. In addition, recent report suggested that such a model could be considered in the field of research involving human subjects. For example:
An interesting model in Canada and one, which I think we need to look at seriously with regard to an accreditation process for human research, is the Canadian Council on Animal Care. (…) it now has remarkable credibility with international recognition. (…) It remains a very interesting and almost uniquely Canadian model. It has federal fiscal support and yet, functioning on its own, setting standards and having a very respected accreditation process for animal research.
The Committee acknowledges that CCAC performs a world class service to Canadians in a cost-effective manner. Though there is no doubt that some Canadians will disagree, mainly those who reject any use of animals in research, the Committee believes that the CCAC offers clear evidence that a very sensitive area that requires minute by minute attention and care can be effectively managed by an approach based on:
· Belief, until proven wrong, that institutions and individuals are seeking to work in a manner that reflects the values of Canadians;
· A firm foundation in increasing awareness and training of individuals on issues and standards;
· An assessment approach that is based on internationally recognized standards and that leads to certification of facilities and processes, that involves experts and lay persons, and that operates in a collegial manner until the point when there is evidence of wrongdoing and failure to take the necessary corrective measures.
While not advocating simply copying CCAC’s mechanisms into the challenge of governance of research involving humans, the Committee believes that much can be learned from CCAC’s experience. The Committee, however, identifies a gap in the interactions between the CCAC and the federal government. Though numerous departments and agencies place themselves under CCAC’s assessment program for research involving animals that is carried out in their own facilities, and CIHR and NSERC require compliance with CCAC’s standards as a condition of receiving research funds, we believe that this is not enough. Therefore, we recommend:
That all federal departments and agencies require compliance with the standards of the Canadian Council on Animal Care for:
§ All research that is carried out in federal facilities, and
§ All research that is funded by federal departments or agencies but performed outside federal facilities, and
§ All research that is carried out without federal funding or facilities, but that is submitted to or used by the federal government for purposes of exercising its legislated functions.
All personal information is precious to individuals, but information about personal health is probably the most sensitive to most people. Health information goes to a person’s most intimate identity, not only because it directly affects the individual him or herself, but also because it can affect family members and others, as well as other aspects of the person’s life, such as his/her employment or insurability.
The right to privacy and confidentiality of personal health information is a very important value for Canadians. Now more than ever, Canadians need reassurance that their privacy and confidentiality will be respected in this era of rapidly advancing technology. However, the quality of their health and health care is also a value that Canadians cherish very dearly. Health care providers, health care managers and health researchers need access to personal health information to improve the health of Canadians, strengthen health services and sustain a high quality health care system. The present challenge for Canadians is to set acceptable limits around the right to privacy, on the one hand, and the need for access to information (by health care providers, managers and researchers) on the other, in order to achieve an appropriate balance between them.
The Personal Information Protection and Electronic Documents Act or PIPEDA, promulgated in June 2000, has stimulated intensive debate and study of this question in the past two years. The health sector had not recognized the potential effects of this legislation on health research and health care management until the legislative review of the Bill was well advanced through the House of Commons. Representatives from various parts of the health sector therefore intervened strongly in hearings before this Senate Committee in late 1999. Their testimony clearly demonstrated that the health sector was not part of the broad consensus supporting the bill, and also that there was no consensus within the health sector itself as to an appropriate solution to the issues about privacy of health information which are raised by the bill. As a result, the Committee concluded that there was a significant degree of uncertainty surrounding the application of PIPEDA to personal health information that required clarification. In response to the Committee’s recommendation, therefore, the federal government decided to delay the application of PIPEDA to personal health information until January 1, 2002. This delay would allow one extra year from the time of proclamation to motivate government and relevant stakeholders in the health sector to resolve these uncertainties and formulate a solution that is appropriate for the protection of personal health information.
The Committee is pleased that several groups in the health sector have seriously addressed many of the concerns raised by PIPEDA, and in particular, the need to protect personal health information, while at the same time allow restricted use of such information for essential purposes such as health research and health care management (which includes the provision, management, evaluation and quality assurance of health services).
Over the past two years, CIHR has undertaken a wide-range analysis of the privacy issues and initiated a broad consultation process with various stakeholders, culminating in recommendations for the interpretation and application of PIPEDA to health research.
CIHR’s recommendations set out precise legal wording in the form of proposed regulations under PIPEDA that, without changing the Act, would facilitate its interpretation and application in the area of health research. These recommendations were presented to the Committee as the most realistic, short-term solution, recognizing that PIPEDA would not likely be amended before January 1, 2002. CIHR emphasizes that its proposed regulations, though significantly limited by the current wording of PIPEDA, could nevertheless provide the necessary guidance to help clarify certain ambiguous terms in a manner that will achieve the objectives of the Act without impeding vitally important research. CIHR is also of the view that regulations, as legally binding instruments, are necessary to enable researchers, and Canadians in general, to understand what the law expects of them and how to govern their conduct accordingly. Furthermore, such regulations could provide the necessary basis on which provinces and territories could develop substantially similar legislation before January 1, 2004, as provided for by PIPEDA.
Finally, CIHR recognizes the need for further work with various stakeholders and the provinces to establish an overall, more coherent, comprehensive and harmonized legal or policy framework for the health sector. Ultimately, whatever law or policy governs this area needs to be interpreted and applied in a flexible and feasible manner, and users need to develop more detailed guidelines for promoting best information practices in their daily work.
The Committee has considered the
regulations proposed by CIHR and we commend CIHR for its efforts in this
regard. We fully support the
intent of the proposed regulations. As
stated in its Fourteenth Report dated December 14, 2001,
the Committee believes that these regulations should be given serious
consideration and, therefore, we recommend:
That regulations such as those proposed by the Canadian Institutes of Health Research receive their fullest and fairest consideration in discussion about providing greater clarity and certainty of the law with the view to ensure that its objectives will be met without preventing important research to continue to better the health of Canadians and improve their health services.
A second and parallel initiative was undertaken by a Privacy Working Group composed of representatives from the Canadian Dental Association, the Canadian Healthcare Association, the Canadian Medical Association, the Canadian Nurses Association, the Canadian Pharmacists Association, and the Consumers Association of Canada. The Privacy Working Group addressed the need to access personal health information for the purposes of health care management. In a report submitted to Health Canada, the Privacy Working Group enunciated the following principles.
· Confidentiality of information in health care delivery is of great importance to Canadians. Fear of disclosure to others of personal health information is likely to harm the trust that is essential in the relationship between patients and providers, and hence limits the willingness to seek care, or to impart information that is important to patient care.
· While an individual’s right to privacy of personal health information is of great importance, it is not absolute. This right is subject to reasonable limits, prescribed by law, to appropriately balance the individual’s right to privacy and societal needs, as can be reasonably justified in a free and democratic society.
· Individuals have the right to: privacy of their personal health information; decide whether and under what conditions they want such information collected, used or disclosed; know about and have access to their health records and ensure their accuracy; and have recourse when they suspect a breach of their privacy.
· In parallel, health care providers and organizations have obligations to: treat personal health information as confidential; safeguard privacy and confidentiality using appropriate security methods; use identifiable information only with the individual’s consent except when the law requires disclosure or there is compelling evidence for societal good under strict conditions; restrict the collection, use and disclosure of personal health information to de-identified information, unless the need for identifiable information is demonstrated; and, implement policies, procedures and practices to achieve privacy protection.
When the Committee met in December 2001 to examine progress made with respect to the application of PIPEDA to health care, we were informed that, while the members of the Privacy Working Group agreed on many issues, they had not yet achieved a definitive and unified position. The Privacy Working Group was of the view that progress towards achieving consensus would require the active involvement and leadership of the federal government. The federal government, however, has taken the position that the concerns of the Privacy Working Group should be resolved between the members of the group and the Privacy Commissioner.
The Committee believes that further guidance and direction is needed in respect of the provision, management, evaluation and quality assurance of health services. For this purpose, constructive and collective efforts by all affected parties must be made to address the relevant issues, and government must lead by example. As stated in its 14th Report, the Committee recommends:
That discussions continue among stakeholders, the Privacy Commissioner, and those federal and provincial government departments involved with the provision, management, evaluation and quality assurance of health services.
Like other Canadians, the members of the Committee place a very high priority on the protection of personal health information. Though protection of personal health information is understandably of very high importance, we must recognize what else is at risk if access is summarily rejected because of perceived threats to the privacy and confidentiality. Rather than give absolute status to the right to privacy, the Committee believes that Canadians must engage in a careful and thoughtful consideration of the reasons why personal information is needed for health research and health care management purposes, the social benefits that accrue to Canadians individually and collectively as a result, and the conditions that must be met before access is allowed. Because of its long-standing responsibility in funding health care and financing health research, the federal government should play a major role in promoting greater public awareness and facilitating greater debate in regard to these issues.
CIHR’s Draft Case Studies Involving Secondary Use of Personal Information in Health Research (December 2001) constitutes an excellent model for encouraging discussion and broader understanding through very concrete examples of real health research projects involving secondary use of personal information. Parallel efforts by others to develop similar case studies illustrating why and how personal information is used for health care management purposes would also be extremely valuable. In light of the above, the Committee recommends:
That the federal government, through the Canadian Institutes of Health Research and Health Canada, together with other relevant stakeholders, design and implement a program of public awareness to foster in Canadians a broad understanding of:
§ the nature of, and reasons for, the extensive databases containing personal health information that must be maintained to operate a publicly financed health care system, and
§ the critical need to make secondary use of such databases for health research and health care management purposes.
This being said, the Committee believes that if Canadians are to allow restricted access to personal health information for essential functions, such as health research and health care management, it is imperative that their personal health information be adequately protected. We wish to emphasize the importance of ensuring, all the while, that Canadians remain confident that the privacy of their personal health information is being respected. We see here, once again, a major federal role to promote a fulsome discussion of the relevant ethical issues and examination of the control and review mechanisms necessary for ensuring that the secondary use of personal information for health care management and health research purposes is conducted in an open, transparent and accountable manner. Therefore, the Committee recommends:
That the federal government, through the Canadian Institutes of Health Research and Health Canada, together with other relevant stakeholders, be responsible for promoting:
§ thoughtful discussion and consideration of the ethical issues, particularly informed consent issues, involved with the secondary use of personal health information for health care management and health research purposes;
§ thorough examination of the control and review mechanisms needed for ensuring that databases containing personal health information are effectively created, maintained and safeguarded and that their use for health care management and health research purposes is conducted in an open, transparent and accountable manner.
The discussion above has addressed issues of privacy of personal health information arising from databases from the existing health care system. The Committee recognizes that new technologies allowing analysis of genes is also introducing new considerations into the management of personal health information. The exploding abilities to link DNA sequences to disease offer the potential both to greatly increase the health care of the individual but also to intrude into the privacy of both the individual and his or her relatives. In addition, these technologies allow the prediction of diseases that have not yet become evident. However, a majority of these predictions represent increased probability of the incidence of the disease, the test being often statistical in nature (e.g., the likelihood is twice that of the general population) rather than absolute (as for Huntington’s disease, for example).
The application of the new genetic technologies to human health is as yet in its infancy, but at least some of the potential benefits and harms are becoming evident. The concerns include the fear that access to genetic information on individuals might affect their employability or insurability.
The Committee is pleased that interdepartmental discussions are underway within the federal government on this wide range of issues, and encourages their pursuit to provide guidance and advice on means of addressing these complex issues in the best interests of Canadians.
Advances in human health often involve participation of researchers in academia, in government and in industry. The boundaries between these are becoming increasingly blurred, and much mutual trust and collaboration is required between them. For example:
· The large majority of published health research in Canada is done by researchers in academic institutions, who obtain funding from government, philanthropic and industrial sources.
· Academic researchers are increasingly entrepreneurial, and are the source of many start-up companies which are providing fast economic growth in the biological revolution.
· Industries obtain many of their ideas for new commercial entities, including new interventions in health, from academic research, and are starting to establish research centres in academe in exchange for right of first refusal on intellectual property.
· Government regulates health interventions, as well as contributing to knowledge through its in-house research. Regulations depend on research carried out by industry, often in academic institutions, which is assessed by governmental scientists, who may call on academic scientists for advice and other assistance.
The potential for conflicts of interest are obvious, as are the concerns that, for example, industrial interests in protecting intellectual property and commercial interests might adversely affect the performance or publication of research carried out in public institutions or with public funds. Media attention has rightly focused on instances when these fears appear to have been realised.
The Committee acknowledges that industrial research is an essential component of health research and health care. In fact, our growing abilities to promote health and to prevent, diagnose or treat disease are very largely due to industry. In addition, despite a number of publicized cases with evidence of conflict of interest, the Committee is of the view that the majority of industry works to high standards of ethics, fully consistent with the expectations of Canadians. Indeed, companies cannot expect to survive in today’s world if they flout society’s expectations.
However, the Committee understands that the growing role of industry in Canada’s health research spectrum, particularly in clinical trials, is a cause for concern. This was highlighted in a recent editorial by the International Committee on Medical Journal Editors, which laid out the ground rules for avoiding conflict of interest in publications. In particular, there is a need to find an appropriate balance between clinical research performed in the academic sector, the ability to compare different treatments for the same disease, the focus of research on diseases in which profits are most likely, (e.g., diseases of wealthy as opposed to poor nations), the publication of negative results (e.g., the need for a registry of all clinical trials), and related areas.
The Committee welcomes the work of CIHR in expanding the collaborative health research programs between academic and industrial research through the University-Industry Program and the CIHR/Rx&D Program. We understand that CIHR partnerships with industry need to be encouraged. However, there is a need to consider whether explicit guidelines should be developed; these guidelines could assist in determining the impact of ethically problematic areas in CIHR’s relations with industry. We have learned that CIHR has set up a working group to study this issue. Therefore, the Committee recommends:
That the Canadian Institutes of Health Research, in partnership with industry and other stakeholders, continue to explore the ethical aspects of the interface between the sectors with a view to ensuring that the collaborations and partnerships function in the best interests of all Canadians.
In its previous reports, the Committee documented the importance of coming to terms with the many complex human resource issues in the health care sector. It suggested in Volume Four that this is one area where it is legitimate to speak in terms of a crisis. All subsequent evidence, whether from witnesses representing the full range of health care professionals, from recent academic research or from new reports, has merely served to confirm this initial finding. In this chapter, we review this evidence and present the Committee’s recommendations, grouped under two main headings: developing a national strategy to deal with the crisis in the area of health human resources, and the reform of the delivery of primary care and its relation to human resource issues.
6.1 Towards a national strategy for attaining self-sufficiency in health human resources
A survey conducted by CIHI in early 2001 amongst policy-makers, managers and clinical organizations indicated that human resource issues were the dominant theme for the next two to five years. The central manifestation of the difficulties in the area of human resources is the shortage of qualified professionals. Concern over human resource shortages has also spread to the public at large, judging by the results of a recent consultation exercise undertaken by the Government of Ontario. Increasing the number of doctors and nurses in the system was identified as the number one health care priority by thirty-five percent of the more than 400,000 respondents to its household survey, the highest percentage given to any issue.
Dr John Ruedy, of the Capital District Health Authority (CDHA) in Halifax, painted a general picture of shortages affecting all aspects of health care delivery. He told the Committee that,
CDHA has recently reduced inpatient and surgical services because of a shortage of skilled nursing staff. Within CDHA we currently have 175 vacant nursing positions, with little likelihood that we will be able to fill these positions, despite efforts to recruit new graduates, upgrade licensed practical nurses, and other strategies to increase the supply of nurses. We have recently discontinued our successful liver transplantation program for lack of transplant surgeons. We are also experiencing serious shortages in other disciplines, notably pharmacy, laboratory and radiation therapy.
The Committee notes that there does not appear to be a single region of the country or a single health care discipline that is exempt from this penury of health care personnel. For example, research conducted for the Mazankowski report, released in January 2002, indicated that Alberta had an immediate need for 333 physician full-time-equivalents and that by 2004‑05 an additional 1329 physicians, representing a 29% increase, would be needed. The Association of Registered Nurses of Newfoundland and Labrador informed the Committee that in their province the “number of graduates does not meet the current demand for RNs” and that “the current number of new graduates is 40% less than in the early 1990s when the number of funded nursing education seats were higher (180 versus an average of 273).”
The shortage of nursing personnel is not limited to registered nurses (RNs) but also extends to nursing assistants and practical nurses. Mr. Paul Moist, President of the Canadian Union of Public Employees in Manitoba, pointed out that “we are short 600 certified nursing assistants here in the city of Winnipeg, not to mention elsewhere in the province.” Allied health professionals are also experiencing the same phenomenon. Mr. Ron Elliott, President of the Canadian Pharmacists Association, indicated that:
Pharmacists, like physicians, nurses and other health care professionals, are facing a shortage. We estimate that we are short 1,500 full‑time pharmacists in our country. The problem is particularly acute in hospital and rural settings.
In her testimony before the Committee, Elisabeth Ballerman, President of The Health Sciences Association of Alberta, noted that there were over 20 disciplines that were experiencing important shortages, ranging from physical and occupational therapists to radiography and medical laboratory technologists to public health inspectors.
Dr Ruedy pointed out that this situation is not confined to Canada, telling the Committee that in Ireland, for example,
In one of the hospitals, they were dependent upon 200 Indonesian nurses to provide adequate nursing services. The entire cleaning staff were Latvian who could not speak English. So this is a universal, world-wide problem and it is going to get worse…
One factor that is expected to contribute to the worsening of the shortage is the aging of the health care workforce. CIHI recently reported that from 1994 to 2000, the average age of Canadians in health occupations rose almost two years from 39.1 to 40.8 years. This trend is consistent for almost all health care providers. For example, the Committee noted in its previous report that the average age of physicians rose from 46.4 to 47.5 between 1996 and 2000, while CIHI has indicated that the average age of practicing nurses in 2000 was 43 years, up from 41 in 1994. The aging of the workforce means that even more new graduates will be needed to replace health care professionals who will be retiring at an accelerating rate.
The Committee strongly believes that one of the major consequences of the world-wide nature of the health human resource shortage is that it becomes necessary for countries to assess how to become self-sufficient in human resources. In no other industrialized country is this more important than here in Canada. For example, as the Committee noted in its previous reports, there is less opportunity for young Canadians to attend medical school in Canada than in any other industrialized country. According to the Association of Medical Colleges of Canada (ACMC) Canada is now near last in the ratio of physicians to population among OECD countries. This situation owes much to the decrease in medical school enrolments that came about as a result of the implementation of a select number of recommendations from the Barer-Stoddart report published in 1991.
In the past, Canada has
relied on International Medical Graduates (imgs)
to fill the gaps. Dr. John A. Cairns, Dean of
Medicine, University of British Columbia, told the Committee that it was no
longer possible for Canada to rely on past practice. He noted that the
majority of imgs
…used to come from the U.K., but comparative practice opportunities between the U.K. and Canada are not in favour of Canada any longer. We have people going back to the U.K. We have very great difficulty recruiting people from the U.K. at the present time. We go to South Africa. The morality of that is highly questionable.
The ACMC has recently amplified this last point:
The morality of recruiting physicians from economically disadvantaged countries must be seriously questioned. Canada is a wealthy nation and it is inappropriate to require poorer countries to incur the heavy cost of medical education only to have their graduates aggressively recruited by a wealthy nation unwilling to make its own appropriate investments in medical education.
The problem of industrialized countries recruiting physicians and other health care professionals from the developing world is of great concern in countries such as South Africa. It was brought to the Committee’s attention that the problem is so serious that on at least two occasions in 2001, senior officials, including the South African High Commissioner of South Africa, met with representatives of the Royal College of Physicians and Surgeons to raise their deep concern over the disturbing level of emigration of physicians, surgeons and nurses to other countries, including Canada.
The Committee agrees that it is unacceptable for Canada to poach highly trained graduates from the developing world. It is therefore convinced that, in such a context, the only remaining alternative is to work towards self-sufficiency. This requires being able to define targets for the numbers of the various types of health care provider that are required, something that is far from being an easy task.
Despite these difficulties, it is clear to the Committee that recent efforts to increase the number of graduates from Canada’s medical schools should be pursued. This is all the more important given the many changes taking place in the medical workforce. Many newer graduates are seeking a better balance between home and work life, and are no longer prepared to work the inordinately long hours that were once the norm. This means that more graduates will be needed. Moreover, the Committee also feels that the number of postgraduate training positions should be raised from its current ratio of one place for every graduating student. As the Committee has noted in earlier reports, funding more postgraduate positions will allow the quicker integration of imgs seeking Canadian credentials, and afford physicians greater flexibility in planning their careers.
A decline in the number of graduates in other disciplines was also noted by various witnesses. The Saskatchewan Registered Nurses' Association pointed out that “in Canada in the early 1990's nursing programs were graduating 10,000 students, today it is closer to 4,000,” with Saskatchewan having lost 300 funded seats over the same time period, resulting in waiting lists of qualified Saskatchewan applicants.
The Health Sciences Association of Alberta (HSAA) told the Committee that:
Enrollment in many programs were cut back through a combination of cuts to health care and advanced education. An example is Medical Laboratory Technology in Alberta, where training schools cut enrollment from 40 students to 20 students.
To take an even longer-term perspective, enrolment in colleges and universities has not only not kept up with the expanding demands of health care, but many of them have actually decreased. Human Resources Development Canada (in its Job Futures 2000 Program) indicates that many allied health worker disciplines have seen a decrease in the number of graduating students. For example, HRDC indicates that in 1997, there were 530 graduates from medical laboratory technology programs across the country - a 42% decrease from 1987. Diagnostic Imaging had a 15% decrease in graduation over the same period. This is an astounding figure, considering the ever increasing demand for technical and professional employees due to both the new technologies and a growing population.
The decline in the number of graduates has
also been compounded by what has been called ‘credential creep.’ This
refers to the gradual increase in the educational levels required to gain
employment in a particular field, often driven by the increasing complexity of
the work involved. The HSAA gave the examples of the Michener Institute in Ontario that has recently
moved from a two-year program in medical radiation technology and nuclear
medicine, to a five-year program, and of the proposal in Alberta to require a
masters level program for entry to clinical practice in physical therapy.
Among the consequences of ‘credential creep’ are that it takes longer to train new graduates, who must make a correspondingly greater commitment of time and money to acquire the necessary training, and who will therefore expect salaries that are commensurate with their levels of training and education. In addition, the proliferation of new equipment means that provision must be made for ongoing training, a process that puts further pressure on limited financial and human resources. It is of no use to invest in expensive equipment if there is not sufficient qualified personnel available to ensure that it is properly used.
It is thus clear to the Committee that the numbers of nursing graduates as well as of allied health professionals need to be sharply increased, and that the federal government must contribute to helping make this happen. The Committee therefore recommends:
That the federal government:
§ Work with provincial governments to ensure that all medical schools and schools of nursing receive the funding increments required to permit necessary enrolment expansion.
§ Review mechanisms by which direct federal funding could be provided to support expanded enrolment in medical and nursing education, and ensure the stability of funding for the training and education of allied health professionals.
§ Review student loan programs available to health care professionals and make modifications to ensure that the impact of inevitable increases in tuition fees, especially as they affect medical students, does not lead to denial of opportunity to students in lower socio-economic circumstances.
§ Provide particular tuition support for nursing students, up to and including waiving tuition fees entirely for a limited period of time.
§ Work with provincial governments to ensure that the relative wage levels paid to different categories of health professionals reflect the real level of education and training required of them.
6.1.3 Increasing the supply of health care providers from Canada’s Aboriginal peoples
In its previous reports, the Committee noted that there was a serious shortage of health care providers from Aboriginal backgrounds. A number of witnesses addressed this problem, in particular with regard to the training of Aboriginal physicians. Dr. Henry Haddad, President of the CMA, noted that to the best of his knowledge there were only about 50 physicians from Aboriginal backgrounds in the entire country. This represents less than one tenth of one percent of the total of more than 57,000 practising physicians in Canada in 2000.
Dr. Joanna Bates, Associate Dean, Admission, University of British Columbia, told the Committee about initiatives taken at her University to encourage greater numbers of students from Aboriginal backgrounds to pursue careers in health-related fields. In the first place, she pointed out that it was necessary to identify barriers that come into play even before Aboriginal students graduate from high school.
(…) we have identified a number of significant barriers to the acceptance and the involvement of Aboriginal people and students entering into faculties, not just medicine but other health careers as well. Specifically, issues around early education are major issues in having Aboriginal people achieve the level of education required to enter professional faculties. The issue of dropout rates and lack of completion at the high school level prevents many Aboriginal students from even getting to the point where they could consider a health professional career.
Other obstacles rooted in cultural differences make themselves felt during the admission process. She noted that admission procedures designed for non-aboriginals
(…) do not accommodate the communication processes that occur with Aboriginal students who are raised on reserves. For example, we look for rapport development with eye contact, and that is not culturally appropriate.
Dr. Bates insisted that it was not a matter of applying different standards to students from different backgrounds, but rather of being aware of the full impact of culturally conditioned behaviour and sensitivities. Thus, she affirmed that:
…we do not mean lower admission standards at all. We are often asked that question. We have similar admission standards for all applicants, but we feel that we have not been identifying appropriately excellence and performance in certain groups, including Aboriginal students.
The Committee expresses its support for these kinds of initiatives. It also notes with approval the financial assistance being provided to aboriginal students by organizations such as the CMA. In this regard, witnesses noted that rises in tuition fees compounded the problem of recruiting Aboriginal and other minority students to careers in health care. For example, Dr. John Ruedy of the Capital District Health District in Halifax told the Committee,
We have had an unbelievably difficult problem in this province in attracting our Aboriginal, Mi'kmaq and Black sons and daughters into medical school. Part of that has been that high school, home and peer environments make it appear beyond expectation that these individuals could ever afford to go to medical school. It is not that they do not have the brains, it is just economically beyond them. This has been seriously augmented by the very large increases in tuition that have occurred over the last five years.
The Committee therefore recommends:
That the federal government work with the provinces and medical and nursing faculties to finance places for students from aboriginal backgrounds over and above those available to the general population.
In its previous reports the Committee noted that for both doctors and nurses, the two groups of health care professionals whose emigration from the country has provoked the most concern, it was their perceived inability to practice in a way that allowed them to make full use of their training that was often central to their decision to move abroad. This was contrary to some people’s impression that tax relief measures alone might be sufficient to lure health care professionals into returning to Canada.
A recent examination of the ‘Brain
Drain’ by Ross Finnie of Queen’s University pointed out in this regard
that overall reinvestment in the health care system would create a kind of
virtuous circle in policy terms. By reaffirming
that better health care is its own worthwhile goal it would help create the
conditions that would lead to a reduction in the brain drain. This, in turn,
would mean a better supply of health care professionals and reinforce further
the ability of the system to provide the kind of care that these professionals
have been trained to deliver.
It is worth noting that recruiters abroad are acutely aware of the desire of Canadian health care professionals to be able to practice in a way that allowed them to make full use of their training. This point was illustrated by an article in La Presse that cited a recruiter from Lausanne, Switzerland, who had been importing nurses from Quebec for over 25 years. He said that, “two-thirds of Quebeckers who come here say that their motivation is to be able to really put into practice the health care policy for which they have been trained.” His efforts have been so successful over the years that 249 nurses from Quebec now work in his hospital, and Quebeckers in general represent 15% of the total staff.
There are no shortcuts to making the working conditions in Canada’s hospitals sufficiently attractive to recruit and retain health care graduates. For example, the Committee highlighted in its fourth report the range of factors that would have to be addressed in order to alleviate the crisis in nursing:
the place where the work takes place must
itself be healthy, safe and secure
· the tools required to do the job must be in place
· the work being done must be interesting and attractive enough to offer its own intrinsic rewards to those who carry it out ─ and at the same time must be adequately rewarded, recognized and respected externally
· working hours and the interplay of home life and work life must be addressed, particularly in a workforce largely staffed by women
At the same time, the Committee believes that there are certain measures that should be envisaged to deal specifically with the problem of health care professionals who have moved abroad. Given that it will take years for a sufficient number of new graduates to be trained, it makes sense to work to repatriate Canadians who already have the necessary training, experience and skills.
The Committee believes that this effort should involve two main elements. On the one hand, the different levels of government and the various professional associations should work together in order to make sure that Canadians abroad are made aware of the changes being introduced into the health care system, and of the new possibilities for professional practice that are arising. The Committee notes that Nova Scotia recently undertook a 10-week campaign along these lines to woo back nurses who had left for the U.S.
On the other hand, certain short-term
incentives should be considered in order to make returning to the country as
attractive as possible and to defray some of the costs associated with
re-establishing oneself in professional practice. In
a recent article, “Why do highly skilled Canadians stay in Canada?” the
authors pointed out that,
In the late 1960s, after a decade of the brain drain to the United States, Canada induced Canadian academics to return with a combination of attractive career opportunities and three years of federal income tax forgiveness.
Dr. Peter Barrett, former president of the CMA, suggests that this historical precedent could be applied to the design of some sort of short-term income tax relief targeted at doctors. The Committee believes that these same measures should also be considered for nurses and other health care professionals in short supply, where there is evidence that they have moved abroad in significant numbers. The Committee therefore recommends:
That in order to facilitate the return to Canada of Canadian health care professionals who are working abroad, the federal government should work with the provinces and professional associations to inform expatriate Canadian health professionals of emerging job opportunities in Canada, and explore the possibility of adopting short-term tax incentives for those prepared to return to Canada.
Throughout the Committee’s hearings witnesses have repeatedly stressed the need for a national health human resources strategy, a proposal which the Committee endorsed in Principle Fourteen in Chapter Two of this report. The question remains, however, as to who should be responsible for the development of such a strategy and how such a strategy should be implemented. The recommendations that have been advanced in this chapter already point to many of the reasons such a strategy is required. Thus, the Committee believes that it is difficult to see how it could be possible to attain the objective of self-sufficiency in health human resources unless there is long-term cooperation and coordination amongst all stakeholders, from government through the professional associations to educators in the health care field.
At the same time, however, it is clear that the need for such a national strategy has long been recognized. One therefore has to wonder why it has proven to be so difficult to formulate. The British Columbia Medical Association noted in its brief to the Committee that,
A national health human resource strategy is indeed what we need, although its development has proved virtually impossible over the course of the past three decades.
In the Committee’s view, moving forward in this regard entails recognizing that such a strategy must not be a ‘federal’ one, with input only or primarily from the senior level of government, but must rather involve all stakeholders, while recognizing that the training and education of health care professionals is a provincial responsibility.
There are other factors that reinforce the need for a national strategy that are worth noting as well. Ms. June Blau, President, Saskatchewan Registered Nurses’ Association, told the Committee that not only is her province not training enough nurses to meet its own needs but that other provinces have traditionally relied on nurses trained elsewhere to meet their own requirements:
We are limited in Saskatchewan right now to 260 seats; we need at least 400. The Province of British Columbia, for example, has only ever trained 50 per cent or less because they rely on recruitment from other provinces. So we train and they use. And that has been the philosophy ever since I became a nurse.
In the Committee’s opinion, problems relating to inter-provincial competition for graduates in health-related fields, further highlights the centrality of developing a national strategy with regard to health human resources. Competition between different jurisdictions for scarce human resources can lead to severe disparities in the ability of various regions to provide health care services.
At the same time, of course, it is true that different provinces and regions of the country offer different attractions that will appeal to health care professionals for a variety of reasons. The Honourable Jamie Ballem, Minister of Health and Social Services in Prince Edward Island, told the Committee,
We have a situation where the perception is that health care is measured by how much money you spend, how many doctors you have, how many nurses you have…However, when you try getting more doctors, they are just not available. Money is not the issue. More nurses are needed; we have 40-plus vacancies in our nursing structure right now. I budget for more than that every year, for all those vacancies, and we will pay more than that in overtime. It is not a question of creating more positions. We just cannot get the bodies.
Thus we are looking at how to utilize the health professionals that we have: what the mix will look like, and who does what. We are trying to have attractive recruitment and retention packages. We are trying to make the workplace something that is attractive to keep people here. We cannot compete in dollars. If it was just a case of dollars and cents, everybody would be in Alberta. We are trying to create a situation in this province whereby it is an attractive opportunity for someone to come and practise their profession.
There is also evidence that there is fierce
financial competition for many categories of health care professionals, not
only between various regions of the country, but also between public and
private providers. The Health Sciences Association of Alberta gave the
following examples to the Committee:
The private sector in radiology in Alberta offers comparable wages, but usually better working hours and conditions (i.e. less shift work, weekends and call-backs). As a result, we have seen an exodus of diagnostic imaging technologists to the private sector. However, the expectations for services in the public sector has not diminished, which in turn creates an overburdened workforce of employees who remain in the public sector.
Another example of private sector competition affecting the public sector is in pharmacy services. Because of the international shortage in Pharmacists, the private sector has been paying much higher wages than the public sector. Beyond wages, the profit sharing and other compensation schemes can result in many Pharmacists earning $20,000-$30,000 a year more in the private sector.
Finally, there is the seemingly intractable problem of the geographical maldistribution of physicians. In its previous reports the Committee repeatedly highlighted the long-standing difficulties in ensuring an adequate supply of health care professionals to the rural and remote regions of the country. Amongst the strategies that were proposed to the Committee to increase the number of physicians who were interested in practising in rural Canada was the oft-repeated idea that by exposing medical students to the reality of rural practice, many would choose to locate there. The Committee heard evidence that this kind of strategy does indeed work. Mr. John Malcolm, Chief Executive Officer, Cape Breton Regional Health Care Complex, gave the following account to the Committee:
You must consider the needs of rural Canada. When Dr. Ruedy was Dean, his department approached us about the idea of establishing a rural family medicine program. We jumped at that – to the point that we found all of the costs to operate the program locally. The university found the cost for the residents…
We have no vacancies in any of the communities around the Cabot Trail and, in fact, we have one community where we appear to have one physician who wants to come more than what we need next year. If you expose people to the opportunity of rural practice, they will choose rural practice just as I choose to live in rural Canada and not return to urban Canada.
The Association of Canadian Medical Colleges (ACMC) has recently argued that there are three major problems that must be confronted in trying to address regional maldistribution:
· The concentration in large urban centres—physicians tend to concentrate in areas of larger population with greater ranges of educational, religious, cultural and recreational opportunities for families and working opportunities for spouses.
· The fact that rural practice has specific demands, with professional practice considerations including heavy “on-call” and “burn-out” factors in rural communities.
· The emergence of an increasing number of opportunities for physicians in urban centres as the shortage of physicians in Canada increases in urban communities.
The ACMC also points out that the issues
that need to be addressed include “recruitment of students with backgrounds
that may be suited to a rural or remote practice, support of physicians in
rural or remote locations (locums), improved use of telehealth, and increasing
the exposure of trainees to rural and remote practices.”
The Committee agrees with these goals. It also endorses the idea that any
contractual arrangements entered into by physicians promising to practice in
rural areas should be voluntary. Coercive measures to force physicians into
rural or remote practices are to be discouraged, as was affirmed by the
Ontario Government’s January, 2001 Expert Panel on Health Professional Human
Resources Report. It included as one of its core principles that “strategies
to improve the distribution of health care professionals should be designed to
attract and encourage them to practice in areas of need rather than penalizing
them for not doing so.”
The Committee would also like to acknowledge the enormous contribution made by the tens of thousands of Canadians who volunteer literally millions of hours of their time in the health care sector. Without them the impact of the shortages of both human and material resources that plague the health care system would be magnified many times over. CIHI notes that a recent Statistics Canada survey found that health organizations benefited from about 9% of the 1.05 billion hours that Canadians volunteered in 2000. In this regard, Ms Maude Peach, the former Director of Volunteer Resources with the Health Care Corporation of St. John’s, told the Committee that in Newfoundland, “volunteers contribute millions of hours a year helping people who are ill, elderly, disabled, disadvantaged, and illiterate.” The Committee wishes to encourage Canadians to continue to contribute to the health care sector by volunteering.
There have been a number of initiatives
already undertaken to move in the direction of better coordinating human
resource planning. A recent study
released at the Premier's conference in Victoria called for provinces and
territories to consider solutions that aim to increase the number of health
care workers in their own jurisdictions while not recruiting workers from
other parts of the country. Mr. William Tholl, CEO
of the Canadian Medical Association (CMA), told the Committee that the CMA was
working with other organizations of health care providers to develop a
multi-disciplinary study that will assess human resource needs based on a
disease-based or patients perspective.
The Committee welcomes the announcement last fall by the Minister of Human Resources Development Canada (HRDC), The Honourable Jane Stewart, that her department is undertaking two important sectoral studies in order to gauge the precise human resources needs for physicians and nurses. The Committee believes that this marks an important step in the direction of developing a national approach with regard to health human resources. Each of these studies will systematically analyse the labour market and culminate in the elaboration of a strategy designed to ensure an adequate supply of appropriately trained professionals.
The physician study will comprise three phases, lasting around three years:
· Phase 1, 9-12 months - A situational analysis reviewing health care delivery models, factors influencing the physician workforce and profiling the physician workforce.
· Phase 2, 12-18 months - A comprehensive human resource analysis of physicians to gather and analyze information on issues impacting on the supply of, and demand for, physicians.
· Phase 3, 12 months - Develop a human resource strategy for physicians through a consultative mechanism involving all relevant stakeholders.
For its part, the nursing study has two phases, that will take two years to complete:
· Phase 1 (duration - 20 months) - A comprehensive analysis of the nursing labour market will be undertaken, including the development of nursing requirements under various delivery model options.
· Phase 2 (duration - 5 months) - A systematic strategy development process will be developed, based on the information developed under Phase 1 of the project, and using input from stakeholders in the nursing sector, including provincial and territorial governments.
The Committee notes with approval the involvement of all the key stakeholders, including provincial representatives, in the process of producing these studies. Despite their importance, however, these HRDC reports should not be seen as all that needs to be done. Given the length of the anticipated time frame for the completion of theses studies, the Committee feels that the measures and initiatives it has recommended in this chapter should not wait that long to be considered. The Committee wishes to stress the importance of acting quickly in this area, while at the same time making sure that the implementation of the strategies that will flow from these reports be seen as part of a longer term health human resources planning process.
The Committee firmly believes that the federal government must play an even stronger role than it has to date in coordinating efforts to deal with health human resources shortages. Given that it is clear that there can be no ‘quick fix’ and that a wide range of interests and concerns must be incorporated in the search for long-term solutions, it would seem appropriate to establish an ongoing framework for dealing with human resource issues. The Committee therefore recommends:
That the federal Government work with other concerned parties to create a permanent national coordinating body for health human resources, to be composed of representatives of key stakeholder groups and of the different levels of government. Its mandate would include:
§ disseminating up-to-date data on human resource needs;
§ coordinating initiatives to ensure that adequate numbers of graduates are being trained to meet the goal of self-sufficiency in health human resources;
§ sharing and promoting best practices with regard to strategies for retaining skilled health care professionals and coordinating efforts to repatriate Canadian health care professionals who have emigrated to other countries;
§ recommending strategies for increasing the supply of health care professionals from under-represented groups, such as Canada’s Aboriginal peoples, and in under-serviced regions, particularly the rural and remote areas of the country;
§ examination of the possibilities for greater coordination of licensing and immigration requirements between the various levels of government.
As the Committee pointed out in its Issues and Options report (Volume Four), the way the delivery of primary care is organized will have a significant impact on our ability to make the best possible use of health human resources.
Primary health care constitutes the first point of contact with the health care system. At present, primary care delivery in Canada is organized mainly around family physicians and general practitioners working in solo or small group practices. Approximately one-third of primary care physicians are solo practitioners and fewer than 10 percent of primary care physicians work in multidisciplinary practices. The vast majority of primary care practices are owned and managed by physicians. Fee-for-service (FFS) payment is the dominant form of physician remuneration. Almost 90% of family physicians surveyed by the Canadian College of Family Physicians in 2001, said they received some proportion of their earnings in the form of fee-for-service payments, and FFS payments accounted for an average of 88 percent of their total income. 
There is no legislative requirement that directly establishes the dominance of FFS payment of physicians. One can, however, identify two of the central features of Canada’s health care system that have contributed to the structure of primary care delivery that prevails today. On the one hand, the original bargain that was struck between government and physicians to incorporate the principle of public payment for private medical practice had the effect of placing physicians at the centre of the health care system, and enshrining FFS as the dominant mode of remuneration. At the same time, limiting the definition of “comprehensive” medically necessary coverage under the Canada Health Act to hospital and physician services has reinforced this same trend.
Thus, when the Committee spoke in Volume Four of the existence of a perceived ‘hierarchy’ amongst the health professions, with specialist physicians at the apex, it was highlighting this structural tendency within the Canadian health care system. The fact that this structure is given shape in part by the Canada Health Act is one reason that it is important for the Committee to examine the issues of health human resources and primary care reform, even though the main responsibility for policy in these areas lies with Provincial and Territorial governments.
Over the years there have been numerous initiatives aimed at encouraging different ways of delivering primary care that could take advantage of more cooperation amongst, and better coordination between, health care providers. But, as a recent study of primary care in Canada by Hutchison et. al., notes:
Despite their wide variety and substantial numbers, innovations in the organization, funding, and delivery of primary care in Canada have been at the margins of primary care rather than at its core. Except in Quebec, where 20 percent of family physicians and GPs work in CLSCs, either full or part time, physicians participating in primary care reform projects or working in unconventional practice settings are in a tiny minority. In Ontario, with its long-established Community Health Centre and Health Service Organization programs and Canada’s largest provincial primary care reform scheme, only about 5 percent of physicians participate in alternative models of primary care funding and delivery.
During its hearings the Committee repeatedly heard that this lack of progress in reforming primary care delivery was, at present, not primarily the result of opposition from health care professionals each seeking to protect their particular bit of turf. From established physicians to residents and internes, through representatives of professional bodies and educational institutions, doctors across the country insisted that they were open to alternative forms of organizing primary care delivery and of remuneration.
In this vein, Dr. Henry Haddad, President of the Canadian Medical Association, told the Committee that “there is a prevailing myth that physicians are a barrier to change when in fact many of the progressive changes in the health care system have been more often than not physician lead.” He indicated that “Canadian physicians are willing to work in teams and the CMA has developed a “Scopes of Practice” policy that clearly supports a collaborative and cooperative approach,” adding that “contrary to popular belief, physicians are very open to alternate payment models.”
Witnesses noted that one of the factors that had contributed to fostering this growing collaborative spirit was the narrowing of the gap in educational levels between physicians and other health care professionals. As well, the changing demographics and career patterns of newly graduated physicians has also had an impact on attitudes towards change. The Canadian Association of Internes and Residents told the Committee:
Medical residents and new physicians often have a different set of personal and professional values, priorities, and workload expectations, flowing in part from a commitment to a more balanced approach to career, family, and well-being. These new values are increasingly playing a role in career and remuneration decisions. As a result, new physicians tend to be more open to alternative methods of compensation and health care delivery than traditional fee-for-service or solo physician practice.
However, some physician representatives, noting that a number of important questions remain unanswered, cautioned that primary care reform was unlikely to be a panacea for all the ills plaguing the health care system. In the words of Dr. Heidi Oetter, President of the British Columbia Medical Association:
Witnesses representing organizations of registered nurses were unanimous in their assessment that primary care reform was essential to preserving and improving the state of health of Canadians and making better use of the full range of skills possessed by diverse health care providers. Thus, the Association of Registered Nurses of Newfoundland and Labrador suggested “that the best approach for achieving the intersectoral cooperation required to formulate and implement a national population health strategy is to embrace the primary health care and wellness model as the basis for the delivery of health services in the country.” The Saskatchewan Registered Nurses' Association affirmed their belief “that the Primary Care Teams are the fundamental building blocks to the sustainability of a publicly funded health system,” while the Registered Nurses of Ontario urged “the Standing Committee to recommend the implementation of true primary health care reform, with 24/7 care being delivered by interdisciplinary teams of health care professionals.”
While the models that have been piloted to date may, arguably, provide better overall quality care, there is no evidence to date to suggest that these models have reduced costs or are generally applicable to the entire health care system. Quality must be the primary goal, but it will likely come with a higher price tag. It has been said that care delivery can conform to any two of the three characteristics of good, fast and cheap, but not all three simultaneously. Primary care is no different.
Representatives of other categories of nurses also endorsed the idea of primary care reform. Pat Fredrickson, President of the Canadian Practical Nurses Association, told the Committee that:
Licensed practical nurses (LPNs) are both a practical and cost effective way of alleviating the shortage of nurses and averting an even more critical nursing crisis. We would strongly support a move away from the hierarchical way of thinking to support your assumption that each profession has its particular strengths, and these all need to be properly valued and deployed.
She noted that across the nursing profession as a whole there has been an increase in the levels of education and training, telling the Committee that “just as the registered nurses' education and scope of practice has expanded in recent years so has that of the LPN.” But she argued that this has not yet led to the deployment of the full competencies of LPNs, noting that “the examples in this country where the knowledge and skills of an LPN are used to their full scope of practice are few and far between.”
And just as there have been historical tensions between nurses and doctors over scope of practice issues, so too have LPNs felt that RNs have been guilty of guarding their own prerogatives. Ms. Fredrickson told the Committee:
The greatest underutilization is also where there is the greatest shortage of registered nurses. The biggest barrier to the utilization of the LPN is in the facilities where the unions protect the turf of the registered nurse through restrictive collective agreements.
At the same
time, representatives of the Association of
Registered Nurses of Newfoundland and Labrador told the Committee that they
supported “the implementation of practices that enable both RNs
and LPNs to work to the full potential of their approved scope of practice
and within their level of competence.”
Finally, representatives of some allied health care professionals also expressed support for the idea of primary care reform. The Ontario Association of Optometrists told the Committee that “as primary eye care providers, we are prepared to participate as part of the multi-disciplinary team vital to the primary care reform goals.” Mr Ron Elliott, President of the Canadian Pharmacists Association indicated that his organization “strongly supports the need for reform of the current hierarchy of health care professionals” and that it believes “that scopes of practice need to change in order to improve effectiveness and efficiency.”
Other witnesses also highlighted the importance of reviewing professional scope of practice rules in order to ensure that as few barriers as possible are put in the way of fruitful collaboration amongst health care providers. Mr. Gerry Fahey, Executive Director, Health Professions Council of British Columbia explained to the Committee the rationale behind the recommendations contained in a major review conducted in that province. He noted that in the old system, known as the ‘exclusive scopes-of-practice system,’ “each profession is granted a descriptive statement of its practice, which is, generally, very broad, and within that statement they have the exclusive right to perform.” The new system that the Council proposed, based on one in place in Ontario, is called the ‘reserved-axe’ or ‘controlled-axe’ model. Mr. Fahey explained that,
The theme of this system is to increase choice amongst health care professionals within safe parameters. In more basic terms, if people are trained and educated to perform certain tasks, they should be allowed to perform them.
He noted that this new system would help to promote interdisciplinary practice, and that, in particular, “the reserved-axe model will assist in promoting specialized practice for nursing and primary roles for nursing.”
Moreover, he pointed out that there were often barriers to expanding inter-disciplinary collaboration contained in legislation as well, telling the Committee that,
(…) buried amidst all this subordinate legislation, regulatory instruments and bylaws, there are, even for one profession, many rules that create barriers for other professions. For example, there are provisions in several statutes that prevent a member of a profession from practicing with another. There are provisions preventing prescription release. There are provisions about who controls laboratory facilities. We identified these as not only barriers to access to the public, but also barriers to solutions coming from government in terms of how they want to use health care personnel.
The Committee strongly believes that revisions to scope of practice rules and other regulations that promote greater flexibility and encourage collaboration amongst health care professionals are to be welcomed, and that, as noted in Principle Twelve in Chapter Two, these should be developed so as to enable all health care providers in the primary care sector to provide the full range of services for which they have been trained. It also expresses the hope that these can be made as uniform as possible across the country.
In order for primary care reform to succeed, several witnesses stressed the importance of ensuring that the education of health care professionals exposed them to the benefits and exigencies of inter-disciplinary teamwork. Dr. John H.V. Gilbert, Coordinator of Health Sciences at the University of British Columbia, affirmed that “if we are serious about changing the extant hierarchical way of thinking, then I contend we should pay serious attention to the manner in which health care professionals are educated.” He added that his sense “is that one of the reasons we are not using our health professional, again, to quote, ‘to anything like the full extent of their capabilities’, is because their educational programs are structured in such a fashion that they do not foster an understanding of the particular strengths and scopes of practice of each other.” His conclusion was that “we need a national health education program with resources to underwrite program development and evaluation at least on a par with some of the social science institutes in the CIHR.”
Dr. John Ruedy, Vice President Academic
Affairs of the Capital District Health Authority in Halifax, expressed a
(…) experiential learning of health professionals is dependent on students’ access to models of health care teams. Professional silos are perpetuated by educational programs that have little relationship to one another. We need to develop core professional education programs that have different exit points for different health professions.
The Canadian Association of Interns and Residents (CAIR) noted that medical education had already begun to shift its focus somewhat, incorporating a greater emphasis on “multi-disciplinary education, so that physicians are learning and working with other members of the health care team including nurses and nurse practitioners, physiotherapists, occupational therapists, social workers and dentists.” Dr. Gilbert told the Committee that the University of British Columbia had just become the first University in the world to establish a college of health disciplines, that involves the affiliation of seven faculties that have agreed to collaborate to promote inter-disciplinary education.
Nonetheless a note of caution in this
regard was sounded by CIHI in a recent study entitled Canada’s Health Care Providers:
Does inter-professional education make a difference? If yes, how much? An international systematic review in May 2000 looked at its effects on professional practice and health care outcomes. Given the current state of research, the authors concluded that the jury is still out on possible outcomes.
A concern of a number of the physicians who appeared before the Committee was that any move to reform primary care be done on a voluntary basis. The Canadian Association of Internes and Residents (CAIR) insisted that, “change will only be successful with the willing and constructive participation and input of the various providers involved in the delivery of health care; if they are alienated by the imposition of coercive measures, their needed goodwill, expertise, morale and cooperation will be seriously undermined.”
A second concern, expressed by the British Columbia Medical Association, had to do with the structure of the inter-disciplinary team that would be responsible for patient care in most reform scenarios. They indicated that in their view it was necessary for physicians to retain a leadership role within these group practices.
What is important to physicians and to patients, we believe, is that each team requires a leader who will accept ultimate responsibility for the patient.
When patients arrive at the physician’s office, they do not know their specific condition, they simply know their symptoms. This ‘information asymmetry’ requires the professional attention of the best-trained generalist, the GP, who can treat or triage for the entire spectrum of patient needs. The full spectrum GP at the point of entry to care is a fundamental strength of Canada’s health system and highly valued by the public. The analogy that you don’t need an electrician to change a light bulb is true, once you know the light bulb is the problem. If, on the other hand, you come home and the lights won’t go on, all you know is that it is dark. The problem could have multiple causes, only one of which is a faulty light bulb. If you call in a ‘light bulb changer’ and that doesn’t solve the problem, then a fuse box technician and finally the electrician, you not only have misused resources, but may have caused harm while waiting. The point is, patients don’t arrive at the physician’s doorstep with a label; they arrive with a complex array of symptoms and complaints that require diagnosis.
Other witnesses, suggested that the reluctance that was still evident on the part of doctors to abandon their central role in the system could inhibit the reform of primary care delivery. Thus, June Blau, of the Saskatchewan Registered Nurses Association, told the Committee:
Doctors are very powerful and do not want to abandon the fee-for-service system. They are afraid that we will short-change them. I do not think anybody realizes how many hours doctors put in per week. I have a daughter who is a family physician, so I am probably more aware than anybody. If and when we put physicians on salary, it will be a very good salary, as it ought to be.
We ought to be recognizing nurses in a similar way. We have to get rid of the hierarchy; doctors are not better than nurses, nurses are not better than LPNs or RPNs, and RPNs are not better than aides. This is not a hierarchy; this is a team. Each profession has some things that only it can do, each has areas of overlap, and we need to work in a team that takes advantage of all of those resources in the best way possible and achieve the efficiencies that come with that. What we have now is everybody working in silos, and with diseases in silos, instead of looking at health as a big picture.
On the whole, witnesses from all the health care professions believed that new forms of remuneration were essential, and that exclusive reliance on FFS was incompatible with widespread reform of primary care delivery. However, it was also generally agreed that there was no single ‘cookie-cutter’ formula that could be applied in all circumstances.
Witnesses argued that each form of remuneration had both advantages and disadvantages. FFS was seen to penalize physicians for spending longer periods of time with patients presenting complex cases. While it was recognized that FFS also encouraged doctors to be strong advocates for their patients within the system, there was concern that this contributed to phenomena such as the ordering of unnecessary diagnostic tests.
Capitation and rostering, on the other hand, were seen to facilitate the integration of primary care services and to emphasize quality care, including preventative medicine, over quantity, but at the cost of potentially generating an incentive for primary care providers to not order all the tests that might be required (because they would be responsible for covering all or part of the costs of these tests out of a fixed per-patient budget).
Several witnesses referred to the study by Hutchison et. al. that indicated that “strong evidence is lacking to support the superiority of any one model of organizing, funding, and delivering primary care and of many suggested model components, including group practice, multidisciplinary practice, and remuneration methods.” It is worth citing the detailed conclusions reached by these same authors:
As we assess the state of evidence regarding primary care physician Payment methods based on the strongest, most relevant studies we have been able to identify, we see the following:
1. There is suggestive evidence that patients’ assessments of overall satisfaction and access/availability are more positive in settings with FFS as opposed to salary or capitation payment.
2. There is minimal or conflicting evidence regarding patients’ assessments of continuity, comprehensiveness, coordination, technical quality, and interpersonal aspects of care.
3. There is minimal evidence regarding practice patterns (for example, frequency of home visits and length of office visits).
4. There is suggestive evidence that capitation payment results in higher rates of referrals to specialists.
5. There is minimal or conflicting evidence regarding quality, utilization, and costs of care.
6. There is minimal evidence regarding differences in use of non-physician providers in FFS versus capitated practices.
7. There is suggestive evidence of better preventive care performance by salaried and capitated physicians than by FFS physicians.
Effects of the range and mix of providers, working relationships and division of labor in multidisciplinary teams on health outcomes, patient and provider satisfaction, and cost-effectiveness with differing patient populations remain to be established.
But even though there is no current consensus on the exact form that primary care reform should take, the Committee nonetheless believes that it is possible to identify a number of key features that must be part of any reform agenda. As it indicated in Chapter Two (Principles Ten and Eleven), the Committee believes that primary care reform should lead to primary care being provided by group practices, or clinics, which operate twenty-four hours a day seven days a week, and that the method of compensating general practitioners should be changed from fee-for-service to some form of blended remuneration combining, capitation, fee-for-service and other incentives or rewards. Blended remuneration provides incentives for general practitioners both to work hard and to care for a large number of patients as they do now (through fee-for-service funding) and to emphasize preventive care and population health (through capitation funding).
The Committee is convinced that the reform of primary care delivery is essential to ensuring the sustainability of Canada’s health care system. As it argued in Chapter Two (Principle Thirteen), the Committee also believes the reform of primary care is necessary in order to create the possibility for primary health care teams to eventually purchase health services provided by hospitals and other health care institutions on behalf of their patients.
Therefore, recognizing that:
· The delivery of primary care to the population at large is a provincial responsibility;
· There is widespread support for the significant reform of primary care;
· No single model for reorganizing primary care will be universally applicable;
· Discussion and cooperation amongst all stakeholders is essential to the successful design and implementation of primary care reform;
· Voluntary adhesion to new models of primary care delivery by both providers and consumers is to be preferred.
The Committee recommends:
That the federal government continue to work with the provinces and territories to reform primary care delivery, and that it provide ongoing financial support for reform initiatives that lead to the creation of multi-disciplinary primary health care teams that
§ are working to provide a broad range of services, 24 hours a day, 7 days a week;
§ strive to ensure that services are delivered by the most appropriately qualified health care professional;
§ utilise to the fullest the skills and competencies of a diversity of health care professionals;
§ adopt alternative methods of funding to fee-for-service, such as capitation, either exclusively or as part of blended funding formulae;
§ seek to integrate health promotion and illness prevention strategies in their day-to-day work;
§ organize themselves so that they develop the capacity to purchase services from hospitals and other institutional providers on behalf of their patients;
§ progressively assume a greater degree of responsibility for all the health and wellness needs of the population they serve.
 David Feeny, The Generation, Evaluation and Application of Health Care Technologies in Canada, Brief to the Committee, 29 March 2001, p. 5.
 Medical Devices Canada, The Role of Medical Devices and Technologies in the Canadian Health Care System, Brief to the Committee, 29 October 2001, p. 4.
 Data are for 1997. See Volume Two, p. 38.
 Volume Two, p. 38.
 Volume Two, p. 39.
 Volume Two, p. 39-40.
 Moreover, even if provinces can purchase health care technology, a shortage of technologists may hamper the full utilization of the new equipment. Similarly, once new technology is acquired, there is a need for training to enable technologists to operate new high-tech equipment. These issues are examined in more detail in Chapter Six.
 Canadian Association of Radiologists, Timely Access to Quality Care – The Obligation of Government, the Right of Canadians, Brief to the Committee, March 2001, p. 2.
 Canadian Coordinating Office For Health Technology Assessment, Brief to the Committee, 29 March 2001, p. 2.
 Martin Zelder, Evidence on Canada’s Medical Technology Gap, Brief to the Committee, 29 March 2001.
 Committee Proceedings, 2nd Session, 37th Parliament, 29 March 2001 (5:20).
 Volume Two, pp. 106-108.
 Report of the National Conference on Health Info-Structure, February 1998, p. 19.
 Advisory Council on Health Info-structure, Connecting for Better Health: Strategic Issues, Interim Report, September 1998, p. 2.
 Saskatchewan Commission on Medicare (Kenneth Fyke, commissioner), Caring for Medicare – Sustaining a Quality System, April 2001, p. 68.
 Health Services Restructuring Commission (Duncan Sinclair, Commissioner), Primary Health Care Strategy – Advice and Recommendations to the Honourable Elizabeth Witmer, Minister of Health, Government of Ontario, December 1999; Commission d’étude sur les services de santé et les services sociaux (Michel Clair, Commissioner), Les Solutions Émergentes – Rapport et recommandations, January 2001; Premier’s Advisory Council on Health (Right Hon. Don Mazankowski, Chair), A Framework for Reform, report to the Premier of Alberta, December 2001.
 According to information provided on Infoway’s Website at http://www.canadahealthinfoway.ca/.
 Premier’s Advisory Council on Health (Alberta), p. 68.
 Saskatchewan Commission on Medicare, p. 81.
 Dr. David Zitner and Brian Lee Crowley, Public Health, Private Secret, Research Report, the Atlantic Institute for Market Studies, January 2002, p. ix.
 The creation of a Citizens’ Council on Health Care Quality was announced in the January 2001 Speech of the Throne. More precisely, the federal government stated that it will work with the provinces and territories to create this council whose objective will be to ensure that the public’s perspective is considered in developing meaningful indicators of health system performance.
 Volume Four, p. 104.
 A Framework to Improve the Social Union for Canadians, An Agreement between the Government of Canada and the Governments of the Provinces and Territories, 4 February 1999.
 Volume Two, p. 137.
 Office of Health and the Information Highway, Tele-homecare: An Overview, Background Paper for Discussion, Health Canada, May 1998, p. 3.
 Volume Two, p. 107.
 See their website at http://www.hc-sc.gc.ca/ohih-bsi/tele/hmcare_e.html.
 F/P/T Advisory Committee on Health Infostructure, Tactical Plan for a Pan-Canadian Health Infostructure – 2001 Update, Office of Health and the Information Highway, Health Canada, November 2001.
 Examples of provincial websites include BC’s HealthGuide, Calgary Health Region’s “Your Health”, and CapitalHEALTHLink.
 Dr. Barry D. McLennan, Chair of the Coalition for Biomedical and Health Research (CBHR), The Improving Climate for Health Research in Canada, Brief to the Committee, 9 May 2001, p. 2.
The Committee wishes to say that sections 5.1 and 5.2 of this chapter were
inspired by a speech given by
Dr. Kevin Keough, Chief Scientist at Health Canada, at the third annual Amyot Lecture organized by Health Canada. We found his lecture very useful in highlighting some of the challenges and opportunities facing health research.
 Council of Science and Technology Advisors, Building Excellence in Science and Technology (BEST): The Federal Roles in Performing Science and Technology, December 1999, p. 5.
 The Western Canadian Task Force on Health Research and Economic Development, Seizing the Future – Health as an Engine of Economic Growth for Western Canada, Summary of the Report, August 2001, p. 2.
 Dr. Kevin Keough, Amyot Lecture, October 2001.
 Dr. Alan Bernstein, president of the CIHR, Health Research Revolution – Innovation Will Shape This Century.
 Volume Two, pp. 93-104.
 Statistics Canada, Estimates of Total Expenditures on Research and Development in the Health Field in Canada, 1988 to 2000, Catalogue No. 88F0006XIE01006, April 2001.
 The NCEs are supported and overseen by the three Canadian granting agencies (CIHR, NSERC and SSHRC). It is worth noting that eight networks, of the currently funded 22 NCEs, conduct health research in the fields of: arthritis, bacterial diseases, vaccines and immunotherapeutics for cancer and viral diseases, stroke, health evidence application, genetic diseases, stem cells and protein engineering. Some of the other NCEs may have impact on health and health care (e.g. Institute for Robotics and Intelligent Systems or Canadian Water Network).
 Government of Canada, Speech from the Throne, First Session of the 37th Parliament, 30 January 2001.
 Volume Two, p. 97.
 Council of Science and Technology Advisors (CSTA), Building Excellence in Science and Technology (BEST): The Federal Role in Performing Science and Technology, 16 December 1999, p. 12. The CSTA consists of a group of external experts providing the federal government with on science and technology issues.
JAMA, vol. 286, p. 1834 (2001).
 Volume Four, pp. 129-135.
 Council for Health Research in Canada, Health Research: The Engine of Innovation, Brief to the Committee, 30 December 2001, p. 2.
 See Committee Proceedings, Issue No. 30.
 Western Canadian Task Force on Health Research and Development, Shaping the Future of Health Research and Economic Development in Western Canada, August 2001, pp. 19-20.
 Expert Panel on the Commercialization of University Research, Public Investments in University Research: Reaping the Benefits, Advisory Council on Science and Technology, 4 May 1999.
 Council for Health Research in Canada, Brief to the Committee, p. 5.
 Canadian Biotechnology Advisory Committee, Biotechnology and intellectual property: patenting of higher life forms and related issues, Interim report to the Government of Canada Biotechnology Ministerial Coordinating Committee, Ottawa, November 2001.
 Laura Shanner, Ethical Theories in Bioethics and Health Law, University of Alberta, Brief to the Committee, 2000, p. 1.
 Dr. Nuala Kenny (42:59-60).
 National Council on Ethics in Human Research, Protecting Human Research Subjects: Case-Based Learning for Canadian Research Ethics Boards and Researchers, Ottawa, 2000, p. 7.
 Despite the care taken by the three federal granting agencies and Health Canada in the international harmonization of guidelines applying to clinical trials involving human subjects, the Committee would like to be in no doubt that any Canadian participating in clinical trials from outside Canada be protected by ethical standards that are at least as stringent as those applying here.
 The following section does not deal with the ethical boundaries surrounding research into human reproductive health as federal legislation is expected to be tabled soon in the House of Commons. The Committee recognizes that this area is at the cutting edge of applied research and evolves rapidly. In our view, all research involving human reproductive material, human organisms derived from such material, other human cell lines, or part of any of them (including human genes) should be subject to full ethical review by REBs and application of the TCPS and other applicable legislation.
 More specifically, see the following four reports: 1) NCEHR (formerly National Council on Bioethics in Human Research or NCBHR), “Protecting and Promoting the Human Research Subject: A Review of the Function of Research Ethics Boards in Canadian Faculties of Medicine”, NCBHR Communiqué, Volume 6 (1), 1995, pp 3-28; 2) Draft report of the Task Force established by the NCEHR to study models of accreditation for human research protection programs in Canada, September 28, 2001; 3) McDonald, Michael (Principal Investigator), The Governance of Health Research Involving Human Subjects, research sponsored by the Law Commission of Canada, Ottawa, May 2000; 4) Draft Report of the Task Force on Continuing Review, CIHR, 2001.
 Professor Michael MacDonald, Law Commission of Canada.
 Ibid., p. 300.
 These objectives correspond to those that were identified in the McDonald report cited in the previous footnote.
 Louis-Nicolas Fortin and Thérèse Leroux, “Reflections on Monitoring Ethics Review of Research with Human Subjects in Canada”, NCEHR Communiqué, Summer 1997.
 Coalition for Biomedical and Health Research, Brief to the Committee, p. 8.
 Sub-Committee on Ethics, The Ethics Mandate of the Canadian Institutes of Health Research: Implementing a Transformative Vision, Working Paper prepared for the Interim Governing Council of the CIHR, 10 November 1999, pp. 18-19.
 Dr. Henry Dinsdale, Speech to the National Workshop of the NCEHR, March 2001, p. 5.
 Second report of the Standing Senate Committee on Social Affairs, Science and Technology, 36th Parliament, 2nd Session, 6 December 1999.
 CIHR, Recommendations for the Interpretation and Application of the Personal Information Protection and Electronic Documents Act in the Health Research Context, 30 November 2001. CIHR’s proposed regulations are available on the CIHR Website at http://www.cihr.ca/about_cihr/ethics/recommendations_e.pdf.
 Indeed, the Act gives provinces and territories until January 1, 2004, to develop substantially similar legislation.
 Standing Senate Committee on Social Affairs, Science and Technology, Fourteenth Report, 37th Parliament, 1st Session, 14 December 2001.
 Privacy Working Group, Privacy Protection and Health Information: Understanding the Implementation Issues, report submitted to Health Canada, December 2000.
 See Canadian Medical Association Journal, 18 September 2001, Vol. 165, pp. 786-788.
 Partnership between CIHR and Canada’s Research-Based Pharmaceutical Companies.
 For a more systematic treatment of the facts and figures in the area of health human resources, we refer readers to Volumes Two and Four of the Committee’s ongoing study.
 Canadian Institute for Health Information (CIHI), Canada’s Health Care Providers, 2001, p. 99.
 The Strategic Counsel, Executive Summary: A Public Dialogue on Health Care, January 2002, p. 19.
 Brief to the Committee, Nov. 6, 2001, p. 1.
 A Framework for Reform. Context Papers: Do We Have a Shortage of Health Care Professionals, Premier’s Advisory Council on Health, Dec. 2001, p. 4.
 Brief to the Committee, Nov. 5, 2001, p. 5.
 Ibid., p. 6.
 32:62 and brief to the Committee, Oct. 17, 2001, pp. 1-2.
CIHI, op. cit., p. 13.
 Ibid., p. 40.
 Association of Canadian Medical Colleges, Strategic Planning for a Sustainable System of Health Care in Canada, Oct. 2001, p. 13.
 Brief to the Committee, Oct. 16, 2001, p. 7.
 Brief to the Committee, Oct. 17, 2001, p. 4.
 Brief to the Committee, pp. 5-6
CIHI, op. cit. p. 10.
 Finnie, Ross, “The Brain Drain: Myth and Reality — What It Is and What Should be Done,” in Choices Vol. 7, No. 6, Nov. 2001, p. 18.
Gilles Toupin “La Suisse maraude les infirmières québécoises,” La Presse, July 21, 2001. (Translation of : « les deux
tiers des Québécois qui débarquent chez nous disent dans leurs lettres de
motivation qu’ils veulent pouvoir répondre réellement à la politique en
soins pour laquelle ils ont été formés ».)
 Steve Proctor, “N.S. works to rehire nurses who went south”, Halifax Herald, Nov. 29, 2001.
 Cited in Peter Barrett “Who Let the Docs Out?” in Choices Vol. 7, No. 6, Nov. 2001, p. 43. The original article by DeVoretz and Iturralde appeared in Policy Options, Vol. 22, no. 2, March 2001.
 Brief to the Committee, Oct. 10, 2001, p. 5.
 Brief to the Committee, p. 5.
 ACMC, op. cit., p. 10.
 Cited in CAIR’s brief to the Committee, p. 14
CIHI, op. cit., p. 13.
CIHI, op. cit., p. 75.
 Canadian Institute for Health Information (CIHI), Canada’s Health Care Providers, 2001, p. 73.
 Hutchison, Brian and Julia Abelson and John Lavis, “Primary Care in Canada: So Much Innovation, So Little Change,” in Health Affairs, Vol. 20 No. 3, May-June 2001, p. 117.
 Ibid., p. 118.
 Quebec’s ‘Centres locaux de services communitaires’ (CLSCs) constitute a network of community clinics that offer a range of health-related services.
Hutchison, op. cit., p. 122.
 Testimony before the Committee, Halifax, Nov. 6, 2001, p. 3 of speaking notes.
 “The New Face of Medicine: Sustaining and Enhancing Medicare,” brief to the Committee, Nov. 2001, p. 4.
 Brief to the Committee, Oct. 19, 2001, p. 8.
 Brief to the Committee, Nov. 5, 2001, p.4.
 Brief to the Committee, Oct. 16, 2001, p. 4.
 Brief to the Committee, Oct. 30, 2001, p. 16.
 Brief to the Committee, p. 8. Emphasis in the original.
 Brief to the Committee, Oct. 29, 2001, p. 5.
 Brief to the Committee, Nov. 6, 2001, p. 3.
 Brief to the Committee, p. 8.
CIHI, op. cit., p. 60.
 Brief to the Committee, pp. 5-6.
 “Setting Sail: Health Care in Transition,” brief to the Committee, Oct. 19, 2001, pp. 9-10.
Hutchison et. al., op. cit., p. 125.
 Ibid., pp. 125-26.