Skip header and navigation
CMA PolicyBase

Policies that advocate for the medical profession and Canadians


11 records – page 1 of 2.

All-terrain vehicles

https://policybase.cma.ca/en/permalink/policy719
Last Reviewed
2014-03-01
Date
1989-08-23
Topics
Health care and patient safety
Population health/ health equity/ public health
Resolution
GC89-46
That the Canadian Medical Association recommend: a) that the federal departments of transport and consumer and corporate affairs enact legislation for the purpose of setting national safety standards for all-terrain vehicles, b) that provincial governments be urged to review and strengthen regulations related to the use of all-terrain vehicles, c) that provincial governments be urged to introduce a specific driver's licence category for all-terrain vehicle drivers; such licence would require demonstrating competence in handling the vehicle.
Policy Type
Policy resolution
Last Reviewed
2014-03-01
Date
1989-08-23
Topics
Health care and patient safety
Population health/ health equity/ public health
Resolution
GC89-46
That the Canadian Medical Association recommend: a) that the federal departments of transport and consumer and corporate affairs enact legislation for the purpose of setting national safety standards for all-terrain vehicles, b) that provincial governments be urged to review and strengthen regulations related to the use of all-terrain vehicles, c) that provincial governments be urged to introduce a specific driver's licence category for all-terrain vehicle drivers; such licence would require demonstrating competence in handling the vehicle.
Text
That the Canadian Medical Association recommend: a) that the federal departments of transport and consumer and corporate affairs enact legislation for the purpose of setting national safety standards for all-terrain vehicles, b) that provincial governments be urged to review and strengthen regulations related to the use of all-terrain vehicles, c) that provincial governments be urged to introduce a specific driver's licence category for all-terrain vehicle drivers; such licence would require demonstrating competence in handling the vehicle.
Less detail

Answering the Wake-up Call: CMA’s Public Health Action Plan : CMA submission to the National Advisory Committee on SARS and Public Health

https://policybase.cma.ca/en/permalink/policy1960
Last Reviewed
2010-02-27
Date
2003-06-25
Topics
Health systems, system funding and performance
Health care and patient safety
Population health/ health equity/ public health
  2 documents  
Policy Type
Parliamentary submission
Last Reviewed
2010-02-27
Date
2003-06-25
Topics
Health systems, system funding and performance
Health care and patient safety
Population health/ health equity/ public health
Text
The public health system in Canada lies at the heart of our community values. It is the quintessential “public good” and is central to the continued good health of our population. When the public health system is working well, few are even aware that it is at work! Only when something goes terribly wrong — like the Walkerton tragedy or when we are faced with a new threat like SARS — is the integral, ongoing role of public health really recognized. The Canadian Medical Association (CMA) has been warning that our public health system is stretched to capacity in dealing with everyday demands, let alone responding to the latest crises. Canada’s physicians have repeatedly called for governments to enhance public health capacity and strengthen the public health infrastructure throughout Canada. Our public health system is the first — and often the only — line of defence against emerging and ongoing infectious and noninfectious threats to the health of Canadians. But we are only as strong as the weakest link in the emergency response chain of survival. As most health threats know no boundaries, our public health armaments must be in a constant state of “battle readiness.” In today’s climate of SARS, West Nile Virus, mad cow disease and monkey pox, even the thought that the public health system may be stretched beyond capacity strikes fear into the hearts of Canadians. Physicians have always been an integral part of the public health system serving as medical officers of health, community health specialists and other related roles. Indeed public health cannot successfully fulfill its mandate without the cooperation and commitment of front-line clinicians. In this submission, we reflect on the lessons to be learned from our recent experience with SARS and reflect on the longer-term needs of the public health system as a whole. The objectives of the pan-Canadian Public Health Action Plan proposed by the CMA are, first to realize a clearer alignment of authority and accountability in times of extraordinary health emergencies; and, second, to enhance the system’s capacity to respond to public health threats across the country (see recommendations, below, and Appendix 1). To achieve these twin objectives, three broad strategies are presented for immediate attention. They are legislative reform; capacity enhancement; and research, surveillance and communications. Legislative reform (see recommendations 1–3) The country’s response to SARS has brought into stark relief the urgent need for national leadership and coordination of public health activity across the country, especially during a health crisis. The apparent reluctance to act quickly to institute screening at airports, the delay in unifying the practice community for a concerted response and the appalling communications confusion worked against optimum handling of the outbreak — despite the best efforts of health care professionals. This is a wake-up call that highlights the need for comprehensive legislative reform to clarify the roles of governments with respect to the management of public health threats. A renewed and enhanced national commitment to public health should be anchored in new federal legislation to be negotiated with the provinces and territories. Specifically, the CMA recommends an Emergency Health Measures Act, to deal with emergent situations in tandem with the creation of a Canadian public health agency headed by a Chief Public Health Officer of Canada. Capacity enhancement (see recommendations 4–7) The SARS crisis has demonstrated the diminished capacity within the public health system. The Greater Toronto Area (GTA), with one of Canada’s most sophisticated public and acute health systems, has not been able to manage the SARS crisis adequately and carry on other health programs. The acute care system virtually ground to a halt in dealing with SARS. There was little or no surge capacity in Canada’s largest city. We should be grateful that SARS did not first strike a smaller centre in a far less-advantaged region of Canada. A critical element of the public health system is its workforce and the health professionals within the acute care system, such as hospital-based infectious disease specialists and emergency physicians who are the front-line interface. Let there be no doubt that the ongoing efforts of the GTA front-line providers are nothing short of heroic. However, the lack of coordinated contingency planning of hospital and community-based disease control efforts was striking. The overall shortage of critical care professionals and the inability of governments to quickly deploy the required professionals to areas of need contributed to the enormous strain on the public and health care system. Considering the importance of the public health system and its clearly limited capacity to protect and promote the health of Canadians, it is incomprehensible that we do not know how much is actually spent on the system. It is imperative that public health expenditures and capacity, in terms of both physical and human resources, be tracked and reported publicly. The CMA recommends a $1-billion, 5-year capacity-enhancement program to be coordinated with and through the new Canadian public health agency. Research, surveillance and communications (see recommendations 8–10) Canada’s ability to respond to public health threats and acute events, such as SARS, and to maintain its effective public health planning and program development depends on sound research, surveillance and rapid, real-time communications. A concerted pan-Canadian effort is required to take full advantage of our capacity for interdisciplinary research on public health, including infectious disease prevention and control measures. New-millennium challenges require moving beyond old-millennium responses. Enhanced surveillance is an overdue and integral part of public health, performing an essential function in early detection and response to threats of infectious diseases. Mandatory national reporting of identified diseases by all provinces and territories is critical for national and international surveillance. During times of crisis, rapid communication to the public, public health staff and front-line clinicians is of critical importance, but in many jurisdictions impossible. We tested our systems during the SARS outbreak and they came up short. The CMA recommends a one-time federal investment to enhance technical capacity to allow for real-time communication. Conclusion The CMA believes that its proposed three-pronged strategy, as set out in the attached recommendations, will go a long way toward addressing shortfalls of the Canadian public health system. Action now will help to ensure that Canadians can once again be confident that they are protected from any future threat of new infectious diseases. Action now will help Canada regain its position as a leader in public health. We wish the advisory committee well in its deliberations and offer the CMA’s assistance at any time in clarifying the strategies set out in our submission. Recommendations to the National Advisory Committee on SARS and Public Health Legislative reform ($20 million / 5 years*) 1. The enactment of a Canada Emergency Health Measures Act that would consolidate and enhance existing legislation, allowing for a more rapid national response, in cooperation with the provinces and territories, based on a graduated, systematic approach, to health emergencies that pose an acute and imminent threat to human health and safety across Canada. 2. The creation of a Canadian Office for Disease Surveillance and Control (CODSC) as the lead Canadian agency in public health, operating at arm’s length from government. 3. The appointment of a Chief Public Health Officer of Canada to act as the lead scientific voice for public health in Canada; to head the Canadian Office for Disease Surveillance and Control; and to work with provinces and territories to develop and implement a pan-Canadian public health action plan. Capacity enhancement ( $1.2 billion / 5 years*) 4. The creation of a Canadian Centre of Excellence for Public Health, under the auspices of the CODSC, to invest in multidisciplinary training programs in public health, establish and disseminate best practices among public health professionals. 5. The establishment of a Canadian Public Health Emergency Response Service, under the auspices of the CODSC, to provide for the rapid deployment of human resources (e.g., emergency pan-Canadian locum programs) during health emergencies. 6. Tracking and public reporting of public health expenditures and capacity (both physical and human resources) by the Canadian Institute for Health Information and Statistics Canada, on behalf of the proposed Canadian Office for Disease Surveillance and Control. 7. Federal government funding in the amount of $1 Billion over 5 years to build adequate and consistent surge capacity across Canada and improve coordination among federal, provincial/territorial and municipal authorities to fulfill essential public health functions. Research, surveillance and communications ($310 million / 5 years*) 8. An immediate, sequestered grant of $200 million over 5 years to the Canadian Institutes of Health Research to initiate an enhanced conjoint program of research with the Institute of Population and Public Health and the Institute of Infection and Immunity that will expand capacity for interdisciplinary research on public health, including infectious disease prevention and control measures. 9. The mandatory reporting by provinces and territories of identified infectious diseases to the newly established Chief Public Health Officer of Canada to enable appropriate communications, analyses and intervention. 10. The one-time infusion of $100 million, with an additional $2 million a year, for a “REAL” (rapid, effective, accessible and linked) Health Communication and Coordination Initiative to improve technical capacity to communicate with front line public health providers in real time during health emergencies. *See Appendix 2: Estimated cost of implementing recommendations. PURPOSE The CMA prepared this submission in response to an invitation from Dr. Naylor to provide input to the National Advisory Committee on SARS and Public Health. We applaud this initiative and welcome the opportunity to present the views of Canada’s medical community to the committee. The CMA’s basic message is that our health protection laws are woefully outdated and the public health system is stretched beyond capacity. This submission draws on our long history of engagement in public health in Canada and our experience both post-September 11, 2001 and with SARS. It builds on the knowledge and experience of our members, national specialist affiliated societies and provincial and territorial divisions. (We acknowledge, in particular, the outstanding efforts of the Ontario Medical Association and the Canadian Association of Emergency Physicians in battling SARS.) In this submission, we examine the lessons to be learned from our experience with the SARS outbreak and reflect on both the immediate and longer-term needs of the public health system as a whole. The objectives of the public health action plan proposed by the CMA are, first, to realize a clearer alignment of authority and accountability in times of extraordinary health emergencies and, second, to enhance the system’s capacity to respond to public health threats across the country, including those posed by preventable chronic disease. INTRODUCTION The public health system in Canada lies at the heart of our community values. It is the quintessential “public good” and is central to the continued good health of the population. When the public health system is working well, few are even aware that it is at work! Only when something goes terribly wrong — like the contamination of the blood supply in the 1980s, the Walkerton tragedy or SARS — is the integral, ongoing role of public health recognized. Our public health system is the first — and often the only — line of defence against emerging and ongoing infectious and noninfectious threats to the health of Canadians. But we are only as strong as the weakest link in the emergency response chain of survival. As most health threats know no boundaries, our public health system must be in a constant state of “battle readiness.” We can ill afford any weakness in our public health preparedness. In today’s climate of SARS, West Nile Virus, mad cow disease and monkey pox, the mere thought that the public health system may be stretched beyond capacity strikes fear into the hearts of Canadians. Physicians have always been an integral part of the public health system serving as medical officers of health, specialists in infectious disease and community medicine (who will not remember the stalwart efforts of Dr. Donald Low on SARS?) and in other related roles. Indeed, public health cannot successfully fulfill its mandate without the cooperation and commitment of front-line clinicians. The CMA has been warning for some time that our system is stretched to capacity in dealing with everyday demands, let alone responding to crises. Canada’s physicians have repeatedly called for governments to enhance public health capacity and strengthen the public health infrastructure throughout Canada. For example, the CMA’s submission to the House of Commons Standing Committee on Finance’s prebudget consultations on October 22, 2001 called for substantial investments in public health and emergency response as a first step to improve the public health system infrastructure and its surge capacity. This submission not only reiterates our previous recommendations, but also outlines specific actions that the CMA believes must be taken to ensure a strong public health system in Canada. The Enduring Impact of Severe Acute Respiratory Syndrome SARS (Severe Acute Respiratory Syndrome): in February 2003, these four letters sent massive shock waves around the world, causing widespread fear and confusion among health care officials and citizens of many countries. The “fear factor” extended across Canada as people realized the full threat of SARS. Since SARS was first identified in a patient in Toronto in March 2003, 438 probable or suspected cases have been reported to Health Canada and 38 people have died (as of June 23, 2003). However, these numbers do not reflect the full impact of the outbreak. The number of indirect deaths due to system shutdown will never be known. Local public health authorities across the country went on high alert. Those in the Greater Toronto Area (GTA) as well as their provincial counterparts diverted almost all of their resources to respond to the crisis. Acute care services were adversely affected as stringent infection-control and screening measures were put into place to control the spread of SARS. In the GTA, the health system — acute and public — was brought to its knees. Over half of the reported SARS cases involved front-line providers as the outbreak largely affected health care settings. Approximately 20 physicians in Ontario contracted SARS and close to 1000 were quarantined. Thousands of nurses and other health care workers also faced quarantine, some more than once. Institutions closed their doors, limiting access to emergency departments, clinics and physicians’ offices. Intensive care units were full and surgeries were cancelled. Front-line health care professionals involved in critical care were stretched to their physical and mental limits. Others found themselves underutilized due to the impact of the infection-control measures on their practice settings. Feast and famine co-existed. Although the outbreak was mainly confined to health care settings, the entire GTA felt the effects. Upwards of 20,000 people entered voluntary quarantine. Businesses were affected. The tourism industry is still reeling. The disruption that SARS caused continues to reverberate through health care systems and economies. In response to urgent requests from both the Ontario Medical Association and Health Canada, the CMA mobilized its membership and assisted in the country’s response to SARS. Everything that could be done was done to facilitate bringing in qualified personnel to relieve those on the front line and make appropriate information available in real time. The CMA has learned its own lessons, both positive and negative. A full chronology of CMA activity is attached as Appendix 3. It has become abundantly clear that Canada’s public health system was ill prepared to deal with the SARS outbreak. If not for the heroic efforts of public health officials, health care providers and research scientists, Canada’s experience would have been much worse. Public health in Canada Public health is the science and art of protecting and promoting health, preventing disease and injury, and prolonging life. It complements the health care system, which focuses primarily on treatment and rehabilitation, sharing the same goal of maximizing the health of Canadians. However, the public health system is distinct from other parts of the health system in two key respects: its primary emphasis is on preventing disease and disability and its focus is on the health needs of populations rather than those of specific individuals. Public health is the systematic response to infectious diseases. It also ensures access to clean drinking water, good sanitation and the control of pests and other disease vectors. Further, it is immunization clinics and programs promoting healthy lifestyles. But it is also there to protect Canadians when they face a public health crisis like SARS. If the public health system is fully prepared to carry out essential services, then communities across the country will be better protected from acute health events. The reality in Canada today is that a strong, consistently and equitably resourced and integrated public health system does not exist. Public health systems across Canada are fragmented — a patchwork of programs, services and resources across the county. In reality, it is a group of multiple systems with varying roles, strengths and linkages. Each province has its own public health legislation. Most legislation focuses on the control of communicable diseases. Public health services are funded through a variable mix of provincial and municipal funding formulae, with inconsistent overall strategies and results, and with virtually no meaningful role for input from health professionals via organizations such as the CMA, or the federal level, in terms of strategic direction or resources. Federal legislation is limited to the blunt instrument of the Quarantine Act and a variety of health protection-related acts. (e.g., Food and Drugs Act, Hazardous Products Act, Controlled Drugs and Substances Act, Radiation Emitting Devices Act) Some of the laws, such as the Quarantine Act, date back to the late 19th century. Taken as a whole, the legislation does not clearly identify the public health mandate, roles and responsibilities of the different levels of government. In many cases, the assignment of authorities and accountabilities is anachronistic. Moreover, there is little information available on the functioning and financing of Canada’s public health system. There is no “one-stop shopping” for authoritative information on public health issues. In 2001, a working group of the Federal, Provincial and Territorial Advisory Committee on Population Health assessed the capacity of the public health system through a series of key informant interviews and literature reviews. The consistent finding was that public health had experienced a loss of resources and there was concern for the resiliency of the system infrastructure to respond consistently and proactively to the demands placed on it. Significant disparities were observed between “have” and “have-not” provinces and regions in their capacity to address public health issues. The report’s findings are consistent with previous assessments by the Krever Commission and the Auditor General of Canada. In 1999, the Auditor General said that Health Canada was unprepared to fulfill its responsibilities in public health; communication between multiple agencies was poor; and weaknesses in the key surveillance system impeded the effective monitoring of injuries and communicable and non-communicable diseases. In 1997, Justice Horace Krever reported that the “public health departments in many parts of Canada do not have sufficient resources to carry out their duties.” The Challenges Ahead The 21st century brings with it an awesome array of new public health risks and ancient foes. Not all of them can be identified at the present time. New diseases (e.g., SARS, West Nile Virus) will likely continue to emerge. Dr. Alan Bernstein, President of the Canadian Institutes of Health Research, recently noted that SARS is here to stay. Old threats, such as contamination of a community water supply (e.g., Walkerton), can strike quickly if vigilance is relaxed or delegated to third parties. This century will likely bring greater focus on threats from the physical environment. Our social environment is also a source of illness as shown by the recent epidemic trends in obesity and type 2 diabetes mellitus. A substantial minority of Canadians continue to smoke. In short, there is no lack of public health threats to Canadians. Although for each of these issues, there is a clear role for clinical care, it is the public health system that will identify and monitor health threats and provide interventions to prevent disease and injury and improve health. The system will also be at the front lines in any response to a biological, chemical or nuclear event. The public health system must have the infrastructure to respond to a range of threats to health, including emergencies. The experience with SARS has reaffirmed that we do not have the system flexibility to respond to these events after they have occurred. It is vital that we take steps now “to embrace not just the essential elements of disease protection and surveillance but also new strategies and tactics capable of addressing global challenges.”<1> CMA’S PROPOSED PUBLIC HEALTH ACTION PLAN No one policy instrument can possibly address the multiple factors involved in meeting the public health challenge head on. Similarly, no one level of government or constituency (e.g., community medicine) can or should shoulder all of the responsibilities. Although we need to restore public confidence quickly, we must also do what it takes to get it right. Accordingly, the CMA is proffering a three-pronged approach to meet the challenge: * A legislative reform strategy * A capacity enhancement strategy * A research, surveillance and communication strategy. These three broad strategies make up the CMA’s proposed 10-point Public Health Action Plan. Taken together, the CMA believes the Plan, if adopted, will serve us very well in the future. Legislative Reform Our experience with SARS — and the seeming lack of coordination between international, federal, provincial and local system levels — should be a massive wake-up call. It highlights the need for legislative reform to clarify the roles of governments with respect to the management of public health issues and threats. Four years ago, national consultations on renewing federal health protection legislation<2> resulted in a recommendation that * “The federal government must be given, either through legislation or through memoranda of understanding among provincial and territorial governments, the authority it needs to effectively address any outbreak of a communicable disease, where the health risk extends beyond provincial borders. * “Federal health protection legislation should be amended to give Health Canada authority to act quickly and decisively in the event of a national health emergency... if it poses a serious threat to public health; affects particularly vulnerable segments of the population; exceeds the capacity of local authorities to deal with the risk; and involves pathogens that could be rapidly transmitted across national and international borders.” Such legislative reform is consistent with the federal government’s well-recognized responsibility to act to protect public health and safety. It fits well with Health Minister McLellan’s recently announced plans to act now to review and update health protection legislation. The SARS outbreak has provided further experience to support these, and in our view, even stronger recommendations. There is ample historical evidence to support the federal government’s role in the management of communicable disease, a role that dates back to the time of confederation. The quarantine power was the initial manifestation of this authority in 1867 under Section 91 of the British North America Act and it gave the federal government the responsibility for ensuring the containment of infectious diseases. The outbreak of the Spanish Flu epidemic in 1918 further highlighted the need for coordinated national efforts and (at the urging of the CMA and others) resulted in the creation of the federal Department of Health in 1919. It would be reasonable to assume that legislators at the time had an expansive view of the need for centralized authority to deal with pan-Canadian health threats. One hundred and thirty-five years after confederation, we have a highly mobile global community. This mobility and the attendant devastating speed with which diseases can spread demand a national response. Currently, there is tremendous variation in public health system capacity among the various provinces and territories and, more particularly, among municipalities and local authorities. Inconsistencies in provincial approaches to public health matters have resulted in significant disparities between and within the provinces.<3> Health Canada’s mandate as set out in its enabling legislation states that “[t]he powers, duties and functions of the Minister extend to and include all matters over which Parliament has jurisdiction relating to the promotion and preservation of the health of the people of Canada.” The CMA believes that it is time for the federal government to take responsibility for public health matters that touch the lives of all Canadians. The legal staffs at CMA, in consultation with external experts, have conducted a detailed review of existing legislation. We have concluded, as Health Minister McLellan recently announced, that there is a long overdue need to consolidate and rationalize current related laws. We also believe there is now public support and a demonstrable need to enhance the powers afforded the federal government. We recognize that the government has put forward Bill C-17, the Public Safety Act and a review of health protection legislation is underway. We believe that amending and updating existing legislation is necessary but not sufficient to address today’s public health challenges. The CMA is calling for the enhancement of the federal government’s “command and control” powers in times of national health emergencies. Specifically we are recommending a three-pronged legislative approach. 1. The CMA recommends The enactment of a Canada Emergency Health Measures Act that would consolidate and enhance existing legislation, allowing for a more rapid national response, in cooperation with the provinces and territories, based on a graduated, systematic approach, to health emergencies that pose an acute and imminent threat to human health and safety across Canada. The existing Emergencies Act gives the federal government the authority to become involved in public welfare emergencies when regions of the country are faced with “an emergency that is caused by a real or imminent... disease in human beings... that results or may result in a danger to life or property... so serious as to be a national emergency.” However, to use this power, the federal government must declare a “national emergency,” which itself has political and economic ramifications, particularly from an international perspective, and mitigates against its use. The CMA believes that this all-or-nothing approach is not in the public’s best interest. The concept of emergency in the context of public health requires a different response from governments in the future. Although we recognize that provincial and municipal governments currently have preplanned sets of responses to health threats, the CMA is proposing new legislation to allow for a rapid federal response to public health emergencies. The proposed Emergency Health Measures Act clarifies the roles and authority of governments and ensures a consistent and appropriate response with sufficient human and financial resources to protect Canadians faced with a public health emergency. Of utmost importance, all Canadians, regardless of their location, can be assured that the response to a health emergency will be delivered systematically by experts who can sustain the effort as needed. The proposed legislation would be founded on a graduated approach that would give the federal government the powers necessary to deal with a crisis, in an appropriately measured way, as it escalates. As the emergency grows, the government could implement stronger measures as required to meet the challenge — in principle, akin to the Unites States’ homeland security levels, which increase as the level of threat increases (see Appendix 4 for a description of the Canadian Emergency Health Alert System). The CMA strongly believes that the federal government must have jurisdiction to act when the ability of the provinces to respond to public health emergencies is so disparate. The inability of one province to stop the spread of virulent disease would have serious implications for the health of residents in the rest of the country. The federal government and the provinces must work together to ensure the safety of all our citizens. 2. The CMA recommends The creation of a Canadian Office for Disease Surveillance and Control (CODSC) as the lead Canadian agency in public health, operating at arm’s length from government. Although some provinces have established centres of public health expertise, considering the breadth of public health issues, the relative population sizes and differences in wealth, it will never be feasible to have comprehensive centres of public health expertise for each province and territory. Even if one achieved this, there would increasingly be issues of economies of scale and unnecessary duplication among centres. This issue is not unique to Canada.1 The CMA is proposing the development of a Canadian Office for Disease Surveillance and Control (CODSC) operating at arm’s length from any level of government. CODSC would have overall responsibility for protecting the health of Canadians. The Office would provide credible information to enhance health decisions and promote health by developing and applying disease prevention and control, environmental health and health promotion and education activities. CODSC would enable a consistent and coordinated approach to public health emergencies as well as play a key role in the prevention and control of chronic diseases and injuries. It would provide national health surveillance, apolitical scientific expertise, system development including standards and guideline development, development and dissemination of an evidence base for public health interventions, skills training and transfer of expertise (i.e., through secondment of staff) and resources, including funding for core programs, to other levels of the system (e.g., provincial and local). 3. The CMA recommends The appointment of a Chief Public Health Officer of Canada to act as the lead scientific voice for public health in Canada; to head the Canadian Office for Disease Surveillance and Control; and to work with provinces and territories to develop and implement a pan-Canadian public health action plan. Many national or federal–provincial–territorial committees play an important role in recommending public health strategies or actions. The National Advisory Committee on Immunization and the Federal, Provincial and Territorial Advisory Committee on Population Health are two excellent examples. But there is currently no single credible public health authority in whom is vested, through legislation or federal–provincial–territorial agreement, the overall responsibility for pan-Canadian public health issues. Therefore, the CMA is recommending the appointment of a Chief Public Health Officer of Canada. Potential roles for this officer may include: * Serve as the head of the Canadian Office for Disease Surveillance and Control * Serve as the national spokesperson for public health with the independence to comment on critical public health issues * Report annually on the health of the population * Develop, implement and report independently to parliament on public health system performance measures * Lead processes to identify and address gaps in the nation’s public health system. Capacity enhancement The public health system infrastructure is the foundation that supports the planning, delivery and evaluation of public health activities. In March 2001, the Federal, Provincial and Territorial Advisory Committee on Public Health<3> reported, In the view of respondents the system ‘is lacking in depth.’ This means that a sustained crisis would seriously compromise other programming. While the research does not indicate that the public health system in Canada is strained beyond capacity, there does appear to be agreement that there is a capacity to manage just one crisis at a time. However, just 2 years later, the GTA, an area with one of Canada’s most sophisticated public and acute care health systems, was not able to manage the SARS crisis and carry on any other programs. The Ontario government recognized this state of affairs when, on 12 June, Ontario’s Health Minister Tony Clement said, “I was concerned that if we had one additional large-scale crisis, that the system would crash.” Important public health issues ranging from immunization to suicide prevention went virtually unaddressed, as the public health capacity in Toronto was overwhelmed. In the absence of a mechanism to share resources within the system and a general lack of overall system surge capacity, the city of Toronto and the province competed with each other to recruit trained staff from other health departments. The SARS outbreak has shown there is no surge capacity in Canada’s largest city. The acute care system in Toronto virtually ground to a halt in dealing with SARS. We must ask ourselves what would have happened if SARS had struck first in a smaller centre in a far less-advantaged region of Canada. Clearly Canada is not fully prepared. We should not have needed a crisis to tell us this. The CMA sees several components to rebuilding the capacity of the public health system. Public health human resources For the essential functions of the public health system to be realized, public health agencies need a workforce with appropriate and constantly updated skills. Canada’s public health workforce is extremely thin. There appear to be too few graduate-level public health professionals (i.e., those holding a master’s degree and physicians who are certified specialists in community medicine); those who do exist are not distributed equitably across jurisdictions. The scarcity of hospital-based infection control practitioners and emergency physicians within the acute care system and the lack of integration of hospital and community-based disease control efforts have been particularly striking during the SARS outbreak. The knowledge and skills required for effective public health practice are not static. They continually evolve as new evidence is identified. However, continuing education programming for public health practitioners is woefully underdeveloped in Canada. Health Canada has made some limited progress in this area, but the issue needs to be addressed much more substantively. 4. The CMA recommends The creation of a Canadian Centre of Excellence for Public Health, under the auspices of the CODSC, to invest in multidisciplinary training programs in public health, establish and disseminate best practices among public health professionals. Canada has world-class expertise in public health. However, it does not have the depth of other countries, partly because we do not have a national multidisciplinary school of public health of the calibre of Harvard in Boston, Johns Hopkins in Baltimore and the School of Hygiene and Tropical Medicine in London. A national school of public health, which might be based on a virtual network of centres nationwide, could * Develop a plan to assess and address the substantial educational needs of new and existing public health staff * Address the coordination of the various academic training programs to meet the needs of the field * Ensure self-sufficiency of our public health workforce. 5. The CMA recommends The establishment of a Canadian Public Health Emergency Response Service, under the auspices of the CODSC, to provide for the rapid deployment of human resources (e.g., emergency pan-Canadian locum programs) during health emergencies. The SARS outbreak clearly demonstrated the need for a pre-planned approach to supporting and augmenting the public health and acute care workforce during a crisis. When health professionals in the GTA were overwhelmed, we were ill prepared to move health professionals in from other jurisdictions to help. Health professional associations like the CMA took the first steps in investigating and overcoming obstacles regarding licensure and insurance. We were taken aback when we found that the Ontario government had unilaterally awarded an exclusive contract to a for-profit company to arrange for emergency relief. The further delay caused by concerns about privacy, confidentiality and harmonizing fees hampered relief efforts. The deployment of health professionals during health emergencies is too important to be left in the hands of for-profit organizations as it was during the SARS experience. An established Canadian Public Health Emergency Response Service, operating on a non-profit basis, would * Maintain a “reserve” of public health professionals who are fully trained and could be deployed to areas of need during times of crisis * Co-ordinate the logistics of issues such as portable licensing, malpractice and disability insurance * Identify funding for staff training and a more equitable distribution of numbers and skills among jurisdictions. Investment in public health Considering the importance of the public health system and its capacity to protect and promote the health of Canadians, it is amazing that we have no reliable or comprehensive information about how much money is actually spent on the system or what public health human resources are available across Canada. This is partially due to the lack of uniform definitions, service delivery mechanisms and accounting practices. Even in the absence of reliable data on public health expenditures, there is ample evidence that the public health system continues to operate under serious resource constraints across Canada. 6. The CMA recommends Tracking and public reporting of public health expenditures and capacity (both physical and human resources) by the Canadian Institute for Health Information and Statistics Canada, on behalf of the Canadian Office for Disease Surveillance and Control. In its latest report on health system expenditures, the CIHI states that 6% of total expenditures in 2000 were spent on “public health and administration.”<4> The inclusion of administrative costs in this figure means that public health funding is substantially less than 6% of health system expenditures.2 Federal Government Estimates report that Health Canada allocated $433 million in 2003–2004 for health promotion and prevention activities with spending scheduled to decrease to $308 million by 2005–2006 or by almost 30%. This decrease in spending exemplifies a decade that has seen tremendous fluctuations in spending on public health activities. The situation is alarming when looked at from a current-dollar basis; there was an 8.8% decrease in funding of public health activities between 1994–1995 and 1997–1998. In fact, federal spending on public health on a constant dollar basis did not regain its 1994–1995 level until 2000–2001. Although the late 1990s saw some reinvestment in public health initiatives, the most recent 2003–2004 estimates suggest that, once again, federal investment in public health will decrease dramatically over the next few years. Indeed, public health continues to represent only a small fraction of total federal direct spending on health (9.7% in 2002–2003). At the provincial level, although we cannot distance public health from administration, we know that it fell victim to the brutal climate of fiscal retrenchment of the 1990s, when in real terms provincial–territorial per capita health spending declined for 5 consecutive years after 1991–1992. During this period, public health was further destabilized by regionalization. According to the Survey of Public Health Capacity in Canada most provincial and territorial officials reported reductions in programming as a result of the transfer of funding and responsibility to regional structures. Although Ontario did not regionalize, in 1997 public health funding was downloaded to municipalities, which left public health departments scrambling to find funds to meet existing programs as well as new services that were mandated by the provincial Health Protection and Promotion Act. Whether talking about federal or provincial–territorial jurisdictions, we can no longer afford to have funding for health and safety subject to the vagaries of financial cycles. However, what perhaps is most alarming is the potentially large economic impact of underinvestment in this area. Although the net cost of the SARS outbreak in Ontario is not yet known, recent estimates suggest that it could be as high as $2.1 billion.3 Given this, the proverbial ounce of prevention that is worth a pound of cure comes to mind suggesting that a relatively modest increase in funding for public health could potentially result in substantial savings in the longer term. 7. The CMA recommends Federal government funding in the amount of $1 billion over 5 years to build adequate and consistent surge capacity across Canada and improve coordination among federal, provincial/territorial and municipal authorities to fulfill essential public health functions. The best way to ensure that the public health system is capable of addressing the range of public health threats, including emergencies, is to significantly increase investment in its capacity. This investment must assist all levels of the system to fulfill essential public health functions, with particular attention to local and regional agencies. The strategic national leadership that we are calling for includes the development of new mechanisms for federal cost sharing of basic public health services and the guarantee of a basic core set of local programs serving everyone in Canada, regardless of where they live. The system also needs to receive targeted funds so that it can do its work smarter and more effectively. Priority areas for this targeted funding should include development of an integrated information system and staff training. Research, surveillance and communications Canada’s ability to respond to emerging public health threats and acute events, such as the SARS outbreak, and to maintain its effective public health planning and program development depends on sound research, surveillance and rapid, real-time communications. 8. The CMA recommends An immediate sequestered grant of $200 million over 5 years to the Canadian Institutes of Health Research to initiate an enhanced conjoint program of research with the Institute of Population and Public Health and the Institute of Infection and Immunity that will expand capacity for interdisciplinary research on public health, including infectious disease prevention and control measures. Similar to the efforts in clinical care to support the use of evidence-based practices, interventions in public health must be based on research, evidence and best practices. A national effort should be undertaken to develop and make widely available, on an ongoing basis, a comprehensive and up-to-date review of the evidence base for public health programs. This information would support effective practice, enhance public health research capacity and support other infrastructure elements (e.g., minimum programs and services, performance measurement, system funding). It could also reduce unnecessary duplication of efforts by different public health agencies. We applaud the tremendous work of the unique trans-Canada partnership of 4 CIHR-funded research teams who, in just 11 weeks, discovered the complete DNA sequence of the coronavirus associated with SARS. This is a perfect example of what can be accomplished when our talented research teams work together. The recent announcement by the CIHR of an integrated national strategy for research on SARS reflects the intent of this recommendation for other public health challenges. 9. The CMA recommends The mandatory reporting by provinces and territories of identified infectious diseases to the newly established Chief Public Health Officer of Canada to enable appropriate communications, analyses and interventions. Public health surveillance is defined as the ongoing, systematic collection, analysis and interpretation of health data necessary for designing implementing and evaluating public health programs. It is an integral part of the public health system and performs an essential function in early detection and response to threats to human health. Current surveillance systems for communicable and noncommunicable diseases are inadequate to allow public health professionals to detect and react to major health issues. For effective public health management, surveillance must be a continuous process covering a range of integrated data sources to provide useful and timely information. 10. The CMA recommends The one-time infusion of $100 million, with an additional $2 million a year, for a “REAL” (rapid, effective, accessible and linked) Health Communication and Coordination Initiative to improve technical capacity to communicate with front line public health providers in real time during health emergencies. In today’s world, international travel, business and migration can move infectious diseases around the world at jet speed. But during the SARS experience, governments and public health authorities were unable to communicate in real time with health professionals on the front lines. Gaps in the basic communication infrastructure prevent public health agencies from talking with each other in real time, and also hinder exchanges between public health staff, private clinicians and other sources of information about emerging new diseases. In response to requests from both the Ontario Medical Association and Health Canada, the CMA mobilized its communication networks to provide physicians with critical information about public health management of SARS. In less than 48 hours, via email and fax, we reached over 45,000 physicians with authoritative information. Through the good offices of the Canadian Council of Health Services Accreditation, this information was also made available to over 1500 accredited health facilities across Canada. Although necessity caused the limits of the system to be tested, SARS highlighted the fact that we do not have information systems in place to facilitate real-time communication with health professionals. Information is the key to effective response during times of emergency. Information in real time is also essential for effective day-to-day health care to provide, for example, information on adverse drug reactions. CONCLUSION SARS brought out the best in Canada and Canadians’ commitment to one another. It also turned a bright, sometimes uncomfortable spotlight on the ability of this country’s health care system to respond to a crisis, be it an emerging disease, a terrorist attack, a natural disaster or a large-scale accident. We must learn from the SARS experience and quickly move to rebuild the infrastructure of a strong public health system. The CMA believes that this 10-point Public Health Action Plan will go a long way toward addressing shortfalls in the Canadian public health system. Action now will help to ensure that Canadians can be confident once again that their governments are doing all they can to protect them from the threat of new infectious diseases. We wish the advisory committee well in its deliberations and offer the CMA’s assistance at any time in clarifying the strategies set out in our submission. APPENDIX 1: THE CMA’S PUBLIC HEALTH ACTION PLAN [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] [TABLE END] APPENDIX 2: ESTIMATED COST OF IMPLEMENTING THE RECOMMENDATIONS [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Recommendation Estimated cost over 5 years Legislative and institutional reform 1. Canada Emergency Health Measures Act N/A 2. Canadian Office for Disease Surveillance and Control (CODSC) ? $20 million 3. Chief Public Health Officer of Canada Capacity enhancement 4. Canadian Centre of Excellence for Public Health $100 million 5. Canadian Public Health Emergency Response Service $35 million 6. Canadian Institute for Health Information and Statistics Canada $35 milliona 7. Surge capacity $1 billionb Research, surveillance and communications 8. Canadian Institutes of Health Research $200 millionc 9. Mandatory reporting Included under 2 and 3 above 10. Enhanced reporting $110 million TOTAL $1.5 billion a. Work is currently underway to break-out public health from the current category of “public health and administration.” b. This is an incremental investment in addition to funding currently available under Health Canada’s Health Promotion and Prevention Strategic Outcome area. c. Funding must be sequestered specifically for new initiatives related to public health. Additional money could also be acquired through funding from the Canadian Foundation for Innovation, which received an additional $500 million in 2002–2003 (announced in the 2003 federal budget) to enhance the Foundation’s support of public health infrastructure. [TABLE END] APPENDIX 3: CHRONOLOGY OF THE CMA’S RESPONSE TO SARS 2002 November 16 * First known case of atypical pneumonia (SARS) occurs in Guangdong province, China 2003 February 11 * World Health Organization (WHO) receives reports from the Chinese Ministry of Health about SARS; 305 persons affected and 5 deaths February 13 * Canadian index case arrives in Hong Kong for a family visit February 18-21 * Canadian index case is a guest at the Metropole hotel in Kowloon February 21 * A medical doctor from Guangdong checks into Metropole hotel in Kowloon. The physician, who became ill a week before staying at the hotel, is considered to be the original source of the infection * This leads subsequently to outbreaks in Vietnam, Hong Kong, Singapore and Canada after guests leave the hotel and return home February 23 * Canadian index case returns home to Toronto March 5 * Canadian index patient dies in Toronto, 9 days after the onset of her illness March 12 * WHO issues global alert about SARS March 13 * National and international media reports begin appearing about SARS * The Canadian index patient’s son, Canada’s second SARS victim, dies 15 days after the onset of his illness March 14 * First reports from Toronto about deaths from SARS March 16 * Health Canada receives notice of SARS patients in Ontario and British Columbia; begins regular updates on SARS on its website * Health Canada initiates its pan-Canadian communication infrastructure, based on its pandemic influenza contingency plans March 17 * CMA calls Health Canada to offer assistance and request “real time information.” CMA immediately placed on list of participants in daily pan-Canadian teleconferences. * CMA adds a SARS page to its website home page (cma.ca) with CMA Shortcuts to expert information and daily updates March 19 * CMA alerts all its divisions and affiliates to the Health Canada and CMA SARS web pages * eCMAJ includes SARS updates on its website March 20 * CMA divisions add a link to SARS information for health professionals to their websites * Health Canada requests CMA’s assistance to inform physicians of the public health management guidelines for SARS March 28 * CMA sends an email to 33,000 members (copied to divisions and affiliated societies) to alert them to Health Canada’s SARS public health management documents and SARS web page April 1 * CMA CEO initiates cross-directorate task force and deploys dedicated staff resources. Some other CMA programs deferred/delayed. Task force begins daily staff SARS Working Group meetings * CMA communicates with the Ontario Medical Association on a daily basis April 2 * CMA holds teleconference with divisional communication directors re: SARS April 3 * CMA contacts the British Medical Association to establish whether we can secure a supply of masks from European sources * CMA organizes a teleconference among national health care organizations to discuss SARS developments April 7 * CMA posts electronic grand rounds on SARS for clinicians on cma.ca; * CMA sends email and fax communication to physicians to raise awareness of SARS e-grand rounds on cma.ca * Working with the Mental Health Support Network of Canada, CMA prepares and posts on cma.ca, fact sheets for health professionals and the public on coping with the stress caused by SARS April 9 * CMA hosts second teleconference among national health care organizations to discuss SARS developments April 17 * Electronic grand rounds on SARS updated and promoted through cma.ca April 23 * CMA sends email to membership requesting volunteers for the CMA Volunteer Emergency SARS Relief Network April 24 * CMA consults with the American Medical Association regarding the possibility of US physicians volunteering for the relief network April 25 * CMA CEO sends letter to deputy minister of health about the urgent need to create a national ministerial SARS task force April 30-May 1 * CMA participates in Health Canada-sponsored international SARS conference in Toronto May 6 * Health Canada announces the National Advisory Group on SARS and Public Health, headed by Dr. David Naylor May 12 * Opinion editorial by Dr. Dana Hanson, CMA president, on SARS and public health surge capacity published in The Ottawa Citizen; May 28 * CMA organizes a meeting of national health care organizations to discuss lessons learned from SARS June 3 * CMA receives an invitation to submit a brief to the National Advisory Group on SARS and Public Health June 6 * CMA sends e-mail to targeted segment of its membership (community medicine, public health, infectious disease and medical microbiology) requesting volunteers for the CMA Volunteer Emergency SARS Relief Network June 25 * CMA president outlines the CMA’s Public Health Action Plan during a speech at the Canadian Club in Toronto * CMA submission to the National Advisory Committee on SARS and public health APPENDIX 4: CMA’S PROPOSED HEALTH EMERGENCY ALERT SYSTEM [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Health alert may be declared in: Level 1 Level 2 Level 3 Level 4 Level 5 * Any area under federal jurisdiction * Any community or province/territory with a risk of transmission to other provinces/territories or countries * Any community or province/territory with insufficient resources to manage the public health emergency within the capacity of the local public health authorities Definition of the area of concern Voluntary quarantine for individuals or property Increasing surveillance Chief public health officer takes the lead in coordinating the response Regulation or prohibition of travel Facilitating communication Reviewing and updating health emergency procedures Determination of local capacity to lead and respond Coordinating necessary response efforts with national disaster relief agencies, armed forces or law enforcement agencies at the federal–provinical–territorial level Medium to significant limitations of civil rights and freedoms Mandatory surveillance Assessing future resource requirements Deployment of a national response team Medium to significant limitations of civil rights and freedoms Evacuation of persons and the removal of personal property Providing the public with necessary information. Discretionary deployment of the national response team or on request of local authorities Quarantine of individuals and/or property with enforcement by law Implementing interventions, as appropriate, and emergency response actions Regulation of the distribution and availability of essential goods, services and resources Assessing further refinement of actions Restricting access to the area of concern Requisition, use or disposition of property Required consent of governor in council No No Yes Yes Yes Lead response team Municipal or provincial Provincial or national Provincial or national National or international International [TABLE END] REFERENCES 1. Garrett, L. Betrayal of trust: the collapse of global public health. New York: Hyperion; 2000. 2. Health Canada. National consultations, summary report: renewal of the federal health protection legislation. Ottawa: Health Canada; 1999. 3. Federal, Provincial and Territorial Advisory Committee on Population Health. Survey of public health capacity in Canada: highlights. Ottawa: The Committee; 2001. 4. Canadian Institutes for Health Information. National health expenditure trends: 1975–2002. Ottawa: CIHI; 2002. 5. Lévesque M. The economic impact of SARS. TD Economics Topic Paper. TD Bank Financial Group; 6 May 2003. Available: http://www.td.com/economics/topic/ml0503_sars.html (viewed: 20 June 2003). 1 Many countries (e.g., United States, United Kingdom, Norway and the Netherlands) have developed critical masses of public health expertise at the national level. The Centers for Disease Control and Prevention in the United States, which has a critical mass, great depth of scientific expertise and the tools and fiscal resources to fund public health programs at both state and local levels through demonstration projects, is a sterling example of the effectiveness of such a central agency. 2 A review by the Canadian Institute for Health Information recognizes the problem with current expenditure tracking systems and has recommended separating public health from government administrative costs and prepayment administration in future health system cost estimates. 3 On 6 May, the TD Bank released a paper<5> suggesting that the cost of SARS to the Canadian economy may be between $1.5 and $2.1 billion.
Documents
Less detail

Listening to our Patient's Concerns : Comments on Bill C 54 (Personal Information Protection and Electronic Document Act) : Submission to the House of Commons Standing Committee on Industry

https://policybase.cma.ca/en/permalink/policy1980
Last Reviewed
2019-03-03
Date
1999-03-18
Topics
Health care and patient safety
Health information and e-health
Ethics and medical professionalism
  2 documents  
Policy Type
Parliamentary submission
Last Reviewed
2019-03-03
Date
1999-03-18
Topics
Health care and patient safety
Health information and e-health
Ethics and medical professionalism
Text
Over the last year, CMA has become increasingly concerned that debate on the issues concerning health information have been framed in terms of access to information with an attendant erosion of privacy and confidentiality. This one-sided approach comes at a time of expansion in our capacity to collect, store, merge, transfer and access information, coupled with trends both in the health care sector and generally related to the use of information To address these concerns and to ensure that privacy and confidentiality in the medical context are valued, protected and preserved, CMA developed and adopted a Health Information Privacy Code. This Code should form the basis of all legislation governing the collection, use and disclosure of health information. Health information is special by its nature. Rules relating to health information must be developed in recognition of its special nature. Ensuring protection of privacy and confidentiality of the patient record must take precedence over other considerations. Bill C-54 fails to do this. Bill C-54 is written from the perspective of encouraging commerce. It appears to have access to information as its dominant value. CMA considers the world of health care to be very different from that of commerce and consequently requiring distinct rules. Health information use must, in all but exceptional and justifiable circumstances, occur only under the strict control of the patient. The patient must be able to exercise control through voluntary, informed consent. Bill C-54 permits the collection, use and disclosure of information without knowledge or consent on grounds such as expediency, practicality, public good, research, offence investigation, historic importance and artistic purpose. The evident lack of protection accorded health information based on such ground, is unacceptable. The absence of protection undermines the integrity of the patient-physician relationship and has the potential to erode the trust patients have in their physicians - a trust that is essential to patients’ willingness to provide the complete information needed to provide them with care. Moreover, distinctions must be made between a patient’s right to know what can or must happen to health information and the right to consent to such use. Not all purposes for the collection and use of health information are equal. Collection and use beyond the therapeutic context should be subjected to rigorous scrutiny before they are permitted to occur. Bill C-54 fails to make such a distinction and treats all purposes that could be identified for information collection or use as equal. Moreover, the Bill has no mechanism to distinguish legitimate purposes, which should be permitted from illegitimate purposes, which should not. In light of the clear deficits in Bill C-54 and the inadequate protection of patient privacy and health information confidentiality, CMA makes the following recommendations: That Bill C-54 be amended to incorporate specific provisions relating to health information and that the provisions of the CMA Code provide the basis of such provisions; and That the proposed rules for health legislation be subject to the legislative test found in CMA’s Code and formulated in light of this process; and That there be a clear definition of the information being accorded a right of privacy and that this definition, at least in the case of health information, include identifiable information, delinked information, anonymous information and any composite form produced when information is linked to any information about a person from any other source; and That, at least in connection with health information, the provisions of the Bill apply equally to the public and the private sectors. I. Introduction The Canadian Medical Association is the national voice of Canadian physicians. Our mission is to provide leadership for physicians and to promote the highest standard of health and health care for Canadians. The CMA is a voluntary professional organization representing the majority of Canada's physicians and comprising 12 provincial and territorial divisions and 43 affiliated medical organizations. On behalf of its 45,000 members and the Canadian public, CMA performs a wide variety of functions, including addressing the emerging issue of electronic health information and confidentiality and privacy. It is in this capacity that we present our position on Bill C 54, The Personal Information Protection and Electronic Documents Act. CMA commends the government for taking the first, important step of beginning the debate on the protection of personal information. The issues are complex and the interests at stake significant. CMA welcomes the opportunity to provide comments on Bill C-54. CMA hopes that its input will strengthen the Bill by ensuring that patient privacy and the confidentiality of medical records are adequately protected. In preparing this brief CMA has had the benefit of the final report of the federal Advisory Council on Health Infostructure, Canada Health Infoway: Paths to Better Health: Final Report. (“Advisory Council Report”) Where appropriate, CMA cites the findings contained in the report. CMA wishes to underscore the key themes of its brief: A. Health information is special by its nature. Rules relating to health information must be developed in recognition of its special nature. Ensuring protection of privacy and confidentiality of the patient record must take precedence over other considerations. Bill C-54 fails to do this. Bill C-54 is written from the perspective of encouraging commerce. It appears to have access to information as its dominant value. CMA considers the world of health care to be very different from that of commerce and consequently requiring distinct rules. B. Health information use must, in all but exceptional and justifiable circumstances, occur only under the strict control of the patient. The patient must be able to exercise control through voluntary, informed consent. Bill C-54 permits the collection, use and disclosure of information without knowledge or consent on grounds such as expediency, practicality, public good, research, offence investigation, historic importance and artistic purpose. The evident lack of protection accorded health information based on such ground, is unacceptable. The absence of protection undermines the integrity of the patient-physician relationship and has the potential to erode the trust patients have in their physicians - a trust that is essential to patients’ willingness to provide the complete information needed to provide them with care. Moreover, distinctions must be made between a patient’s right to know what can or must happen to health information and the right to consent to such use. C. Not all purposes for the collection and use of health information are equal. Collection and use beyond the therapeutic context should be subjected to rigorous scrutiny before they are permitted to occur. Bill C-54 fails to make such a distinction and treats all purposes that could be identified for information collection or use as equal. Moreover, the Bill has no mechanism to distinguish legitimate purposes, which should be permitted from illegitimate purposes, which should not. This brief will first look at the apparent rationale of Bill C-54 and its potential application to health information. The brief will next describe why CMA considers health information to be special in nature and worthy of special protection. Finally, the brief reviews the difference in approach between Bill C-54 and CMA’s Health Information Privacy Code to illustrate that Bill C-54 provides inadequate protection to patient privacy and health record confidentiality. II. Rationale and Scope of Bill C-54 A. Rational of Bill C-54 The driving force behind Bill C-54 is the support and promotion of electronic commerce. The second part of the Bill is devoted to permitting electronic versions of documents and signatures to be legitimate or ‘originals’ if the provisions of the Act are followed. Part two of the Bill is quite distinct from part one and both parts could stand alone as separate pieces of legislation. Part two simply allows electronic versions of documents and signatures to be recognized as legitimate. On its face, this has little to do with the protection of personal information except to the extent that storage of documents in electronic form provides greater ability to access, link and merge information. Certainly, the Bill appears to draw on this connection by including, in its statement of purpose, the provision of a right of privacy in an era in which technology increasingly facilitates the collection and free flow of information. Part one concerns all forms of information, electronic and otherwise. It gives some protection to personal information by requiring consent in some instances. In CMA’s view, a fundamental difficulty with part one and the Bill in general is that it’s goal is to promote commerce and thus all information is implicitly considered as falling within the ‘commercial’ realm. In the case of health information this is surely not the case or the only consideration. Moreover, this creates a clash of values when applied to a health care system that is a public system. The Advisory Council Report takes a hard line on this issue and states that legislation respecting the privacy protection of health information, “should also contain a clear prohibition against all secondary commercial use of personal health information.” Because all information is subjected to similar rules, there is no attempt within the Bill to distinguish some purposes for collecting information from other purposes. The Bill takes the approach that the purposes should be known and documented. While not stated explicitly, the assumption is that all purposes identified are legitimate and are permitted. CMA has quite a different view when it comes to health information and will expound its view throughout this brief. B. Scope - Application to Medical Records CMA is uncertain whether or to what extent Bill C-54 will apply to health records. The full name of the Act states, in part: An Act to support and promote electronic commerce by protecting personal information that is collected, used or disclosed in certain circumstances.... What are these circumstances? Section 4(1) states that Part 1 (the part protecting personal information) applies in respect of personal information that: (a) the organization collects, uses or discloses in the course of commercial activities; (b) the organization collects, uses or discloses interprovincially or internationally; or (c) is about an employee of the organization and that the organization collects, uses or discloses in connection with the operation of a federal work, undertaking or business. It should further be noted that three years after the Act is in force it will apply equally to activities that occur strictly within the province unless there is legislation in the province that is substantially similar to the Bill (see sections 27(2)(d) and section 30). The first issue is the provision of section 4(1)(a) - collection, use and disclosure in the course of commercial activities. There seems to be an assumption on the part of government that this automatically excludes health records, (although the Act fails to define what is meant by commercial activity). Is this accurate or does the assumption fail to recognize that there is not a clear, unambiguous distinction between what might constitute commercial activity or other activity? There are two points to be made here. The first concerns clarity around where commercial ends and health care begins. Which health care settings that operate for profit are excluded from the Act? This question speaks to the difficulty of delineating what activity is considered health care and what activity is considered commercial. Moreover it recognizes that the increased encouragement to public/private funding of endeavours within the health care sector may make it increasingly difficult to make this distinction; for example in the area of research. The second concerns the movement of health information from the health care setting (recognizing that this is not easily distinguished from the commercial setting) to the commercial setting; for example, health information provided to insurance companies. When health care information is collected in a health care setting and transferred to a commercial setting, which rules apply - Bill C-54 or no rules? In CMA’s view, there is no clear way of distinguishing commercial activity from health care activity in a way that ensures that the health care record is subject to different rules than those pertaining to other records. Moreover, the dilemma for government is that even if such distinction could occur, would it be desirable that health records be subject to no rules? Put in another way, will those organizations that currently collect health care information be entitled to claim that since the information forms part of the health record they are not subject to the provisions of C-54? Under such a regime health care records would be subject to an even lower standard than that provided for information collected in the commercial context. In terms of the provisions of 4(1)(b) - interprovincial and international transfer of information. This appears to apply to all information. In the existing environment and developments such as the “health information highway,” interprovincial transfers of information, the capacity for the central collection and storage of information, mechanisms such as telephone and cable to transfer information and general trends related to population health, it seems likely that interprovincial traffic will grow rather than diminish. The significance of this section, therefore, cannot be underestimated. Finally, the provisions of 4(1)(c) may well contain health information about the employee. In preparing this brief CMA has assumed that the Bill will provide a scheme that applies to some health information. No doubt the extent of the federal governments ability to legislate in this area generally will be the subject of extensive debate. However, CMA has no comment on this debate and provides its opinion in the interests of ensuring that the rules that relate to health information are compatible with preserving the integrity of the patient-physician relationship and the protection of patient privacy and health information confidentiality. CMA considers that the government has an opportunity to provide Canadians with strong privacy rights in health information. Indeed, CMA believes that it is incumbent upon the government to do so. C. Scope - Government Excluded Bill C-54 expressly excludes a large part of government activity from its ambit. While government activity is to some extent governed by the Privacy Act, R.S.C. 1985, P-21, the rules of this act provide less protection than those of Bill C-54. Government should subject itself to at least the same rules that it requires of the private sector in so far as it is a collector and user of information. Moreover, CMA is of the view that government’s practices relating to the collection, storage, merging, transfer and use of health information must be subject to more stringent rules than those found in either the Privacy Act or Bill C-54. The Advisory Council Report also calls for the same rules to apply to the public and private sectors, rules that are more stringent than those found in the Privacy Act or Bill C-54. Therefore, CMA recommends: That, at least in connection with health information, the provisions of the Bill apply equally to the public and the private sectors. III. Considerations Regarding Patient Privacy and Confidentiality: Medical Context Versus Commercial Context A. CMA’s Opinion Over the last year, CMA has become increasingly concerned that debate on the issues concerning health information have been framed in terms of access to information with an attendant erosion of privacy and confidentiality. This one-sided approach comes at a time of expansion in our capacity to collect, store, merge, transfer and access information, coupled with trends both in the health care sector and generally related to the use of information To address these concerns and to ensure that privacy and confidentiality in the medical context are valued, protected and preserved, CMA developed and adopted a Health Information Privacy Code, which is appended to and forms part of this brief. In commenting on this Code the Advisory Council Report notes: The code represents an important contribution to the deliberations of Canadians and legislators on how to safeguard privacy across the health domain. There are a number of principles underpinning the Health Information Privacy Code: 1. The provision of health care to all Canadians irrespective of social circumstances or health status is a highly regarded value in Canadian society. The system is publicly funded and universally accessible. 2. The right of privacy is fundamental to a free and democratic society. 3. Rules relating to health information must recognize its special nature. Health information has a high level of sensitivity, it is confided or collected in circumstances of vulnerability and trust for the primary purpose of benefiting the patient. 4. Physicians now and historically promise that they will keep their patients’ information secret; this is a hallmark of the profession. 5. The patient-physician relationship is one of trust and a central feature of this trust is the belief in patients that information confided in or collected by physicians and other health care providers will be kept secret. 6. Patients believe that the information they disclose or that is gathered as a result of their seeking health care will be used to provide them with health care; uses beyond the provision of health care without knowledge or consent go beyond what a patient’s reasonable expectations were when information was disclosed or gathered and is a breach of the trust patients place in their physicians. 7. Except in very limited circumstances, consent is required for health information collection, use, disclosure or access for any purpose. 8. Information required to provide patients with the health care sought should be readily available to those who require it to provide an aspect of care. 9. Uses of health information for purposes other than the provision of health care to the person seeking care should be subject to rules that: - protect and promote privacy and confidentiality; - generally require express consent; - can be justified according to specific criteria. 10. Patients should know the uses to which their health information is put prior to their disclosure of it. 11. Patients may be reluctant to disclose information if they are concerned about the uses to which the information is put or the persons entitled to access it. B. Public Opinion To determine the public’s view on these issues, CMA commissioned Angus Reid to conduct research in two forms, quantative (survey) and qualitative (focus groups), and has found the following: 1. Patients believe that their health information will be kept confidential and consider this to be important. 2. Patients believe it important to know and control how their health information is shared with others. 3. Patients do not want their health information released to third parties (including governments and researchers) without their knowledge and consent. 4. Patients may have concerns about the release of delinked or anonymous information to third parties without their consent. 5. Patients may be reluctant to confide information as a result of concerns related to its use or disclosure. These findings are consistent with general findings relating to the public’s concerns about privacy and confidentiality. C. The Advisory Council Report The Advisory Council Report relates to the electronic health record. However, given the direction towards the greater use of technology and the underlying principles informing the Advisory Council, CMA believes that the recommendations are generalizable to all health information. A key principle of the Advisory Council is that access by health care professionals should be based on a need-to-know basis under the strict control of the patient. The Council, like CMA calls for scrutiny and justification of secondary uses of health information. The Council is opposed to the use of multipurpose identifiers on the grounds that it becomes too easy for government officials from one department to gain access to a person’s health record or combine a number of records to assemble a comprehensive profile. (Anecdotal evidence suggests that this concern may be justified and that there are insufficient safeguards preventing the flow of health information among government departments) The Council recommends that all governments ensure that they have legislation to address privacy protection specifically aimed at protecting personal health information through explicit and transparent mechanisms. Included in these mechanisms are: * The provision of a precise definition of free and informed consent, as well as a statement of principle that informed consent should be the basis for sharing personal health information; * Any exemption to the requirement of informed consent should be clearly set out in law. More specifically, legislative guidance should be provided on how to balance the right of privacy with the public good for research purposes to implement a coherent and harmonized pan-Canadian system for independent, ethical review. * There should be provisions regulating secondary uses of non-identifiable health information. These provisions should address privacy concern surrounding the degree to which data might be linked back to an identifiable individual. * Legislation should set clear limits on access to and use of health information by third parties outside the health care system. To prevent the serious invasions of privacy that can result from the unrestricted linking of personal health information with other kinds of information on the same individual, the legislation should contain provisions prohibiting the use for any other purpose of unique personal identifiers in health information systems. D. The Approach in Bill C-54 Bill C-54 is inadequate in its protection of health information. The Bill makes a meagre attempt at distinguishing among varying types of personal information and gives no additional protection to information that is highly sensitive (such as health information). The Bill permits the collection, use and disclosure of information without knowledge or consent on grounds such as expediency, practicality, public good, research, offence investigation, historic importance and artistic purposes. In the context of health information, these grounds should be subject to intense scrutiny to determine their relevance and legitimacy. In CMA’s view and according to the tests established in the CMA’s Code, some of these grounds would not withstand such scrutiny. E. Conclusion CMA’s Code offers a template for the protection that should be accorded health information, a template that appears to have some public support and that strives to retain patient confidence in their physicians and the health care system. The Report of the Federal Advisory Council also recognizes that special rules are required for health information. The Council’s Report places strong emphasis on the protection of privacy, recognizes that as a general rule the flow of health information should be on a need-to-know basis and under the control of the patient through the exercise of free and informed consent and requires limits on the secondary use of health information. In CMA’s view, Bill C-54 should incorporate specific rules relating to health information and CMA’s Code should form the basis of these rules. CMA recommends: That Bill C-54 be amended to incorporate specific provisions relating to health information and that the provisions of the CMA Code provide the basis of such provisions. In addition, CMA’s Code provides a test that legislation addressing health information should be subjected to. This test (found in section 3.6 of the CMA Code) states: Any proposed or existing legislation or regulation made under legislative authority that permits or requires health information collection, use, disclosure or access shall be subjected to the following legislative test: (a) There must be demonstration that: (i) a patient privacy impact assessment has been conducted, the analysis has been made public and has been duly considered prior to the introduction of legislation [section 3.5 of the Code provides guidance with respect to the patient privacy impact assessment]; (ii) collection, use, disclosure and access will be limited to the greatest degree possible to ensure that * the collection of health information by persons external to the therapeutic context will neither trade on nor compromise the trust of the patient-physician relationship; * patients are not likely to be inhibited from confiding information for primary purposes; * the ability of physicians to discharge their fiduciary duties to patients will not be compromised; and, * patient vulnerability will not be exploited; (iii) collection, use, disclosure and access will be restricted to what is necessary for the identified purpose(s) and will not impede the confiding or collection of information for primary purposes; (iv) provisions exist for ensuring that patients are provided with knowledge about the purpose(s) and that, subject to 3.6(b), patient consent is clearly voluntary; (v) the means used are proportionate and the collection will be limited to purposes consented to or made known to the patient; (vi) the patient’s privacy will be intruded upon to the most limited degree possible in light of the purpose(s) consented to or made known to the patient; (vii) linkage of the health information will be limited; and (viii) unless clear and compelling reasons exist: * all reasonable steps will be taken to make health information anonymous; and * if it has been demonstrated that making health information anonymous would render it inadequate for legitimate uses, the information will be collected and stored in a deidentified-relinkable format. (b) When nonconsensual collection, use, disclosure or access is permitted or required by legislation or regulation that meets the requirements of the Code, the following conditions must also be met: (i) the right of privacy has to be violated because the purpose(s) could not be met adequately if patient consent is required; and (ii) the importance of the purpose(s) must be demonstrated to justify the infringement of the patient’s right of privacy in a free and democratic society. (c) Any legislative provision or regulation that permits or requires health information collection, use, disclosure or access nonconsensually shall not, without compelling reasons, be applied retroactively to existing health information. In its current form, Bill C-54 would not pass the scrutiny of the test. Consequently, CMA recommends: That the proposed rules for health legislation be subject to the legislative test found in CMA’s Code and formulated in light of this process. IV. Specific Comments on Bill C-54 From the Perspective of CMA’s Health Information Privacy Code This section highlights some key distinctions between the approach taken by Bill C-54 and CMA’s Health Information Privacy Code. The purpose of this section is to illustrate through examples the divergence of approaches taken with the ultimate aim of demonstrating that Bill C-54 is inadequate in the protection it accords health information. A. General Bill C-54 and CMA’s Health Information Privacy Code are based on the Canadian Standards Association’s Model Code for the Protection of Personal Information (CSA Code). Bill C-54 and the CMA Code also augment the CSA Code’s provisions where considered necessary. The need to extend the provisions of the CSA Code demonstrates that the CSA Code, being general in nature, provides inadequate protection to information in many instances. Although Bill C-54 and the CMA Code are based on the CSA Code, each takes a different approach to the ultimate protection accorded information. This divergence demonstrates that there are many ways to resolve issues left unresolved by the CSA Code. In other words, it is not a foregone conclusion that basing provisions on the CSA Code will result in appropriate or adequate protection of information. Rather, resolution of issues requires thought and deliberation and will depend in some measure on the primacy given to certain values. Bill C-54 appears to have given access primacy in the pursuit of commerce, whereas CMA gives privacy protection primacy in the pursuit of the provision of health care in accordance with physicians fiduciary obligations to patients and the integrity of the patient-physical relationship. CMA did not develop its approach in a vacuum. It reviewed and was inspired by the report of the House of Commons Standing Committee on Human Rights and the Status of Persons with Disabilities, entitled Privacy: Where Do We Draw the Line? This report articulates and makes explicit many of the issues that should be informing the current debate on Bill C-54. In addition, the Report of the Advisory Council takes a very different approach to Bill C-54. The Report recognizes the need to pay more than lip service to protecting privacy and confidentiality and recommends specific measures aimed at doing this. B. Information Protected Bill C-54 The Bill covers “personal information” which is defined to mean “information about an identifiable individual that is recorded in any form.” This definition raises a host of questions: 1. Does the Bill cover or not information that has been delinked to an identifiable individual but that could be relinked to identify them? 2. Does the Bill only exclude anonymous information - that is, information that could never be relinked to an indentifiable individual? And if so, is there an unjustified assumption that information can, in all cases, be rendered truly anonymous? 3. In the case of delinked and anonymous information, who decides that information about an identifiable individual can be rendered delinked or anonymous? The holder of the information or the person to whom the information pertains? 4. Is it accurate or reasonable to assume that people have no interest in information emanating from them once it has been rendered delinked or anonymous? CMA Health Information Privacy Code The CMA Code provides a broad definition of health information: Health information means any information about a patient that is confided or collected in the therapeutic context, including information created or generated from this information and information that is not directly or indirectly linked to the provision of health care. It includes all information formats. In addition, the CMA Code covers identifiable information, delinked information, anonymous information and any composite form that is produced when health information is linked to other information about the patient. CMA’s research indicates that patients may have an interest in their information when it is in delinked and anonymous formats. Advisory Council Report The Advisory Council Report addresses this issue in a number of ways. In making recommendations concerning the definition of health information the Report calls for legislation that embodies: a clear definition of health information, broad enough to incorporate health information collected in public and private systems and to ensure that equal obligations and penalties apply to both public and private sectors. The report recognizes a spectrum of data formats: completely anonymous, linked to pseudo-identities, code linked and reidentifiable, completely identifiable. In terms of sensitivity, the Report notes that information that can be re-identified is somewhat more sensitive that completely anonymous data or anonymous data linked to pseudo-identities and that completely identifiable health information is the most sensitive type of health information. The Report also notes that there can be some degree of risk of re-identification of what was believed to be anonymous data through such processes as data matching and the results of analysis using small cells. In this light, the Report recommends: A definition of personal health information, which takes into account the spectrum of potential identifiability in the case of health information. Furthermore, in the case of secondary uses of health information, the Report notes that provisions regulating secondary uses of non-identifiable health information must form part of the legislation. Such provisions should address privacy concerns surrounding the degree to which data might be linked back to an identifiable individual. The Report raises further issues relating to the use of delinked and anonymous data. The Report notes that there may be group interests and concerns regarding data collected and states: Privacy can also be a concern for groups such as Aboriginal and immigrant communities. These communities worry that research on their members could be released to the media without notice and used in a negative way. This emerging issue is growing in importance and, in the Council’s view, should be a serious consideration in the context of ethical reviews of proposed research projects. It is important to note that in these instances it is not the fact that data is linked to an identifiable individual that is of concern. Rather, it is the ability to accumulate, process and dissect information that has ramifications for an individual because they are part of a group segregated and identified by the research. Finally, the Report considers the use of person-based data but not people’s names, for statistical purposes and notes that this too raises concerns about privacy. The Report notes that: “These concerns have traditionally been seen as a tradeoff against data access for research and analysis in the public interest.” The Report restates this to provide a more positive view of privacy and states: “the best way for analysts to maintain the public’s consent to use sensitive (but anonymous) health data is to show the public that privacy, confidentiality and security are being taken seriously.” Recommendation That there be a clear definition of the information being accorded a right of privacy and that this definition, at least in the case of health information, include identifiable information, delinked information, anonymous information and any composite form produced when information is linked to any information about a person from any other source. C. Knowledge of Purpose Prior to Collection Bill C-54 Bill C-54 is ambiguous in its provisions relating to whether or not a person should know the purposes for which information will be used prior to disclosure. This is due in part to the use of the term “knowledge and consent” as one concept rather than distinguishing the knowledge requirement from the consent requirement. What a person should know in relation to the purposes information might be used or disclosed for, prior to its being given is distinct conceptually from whether the person must consent before information can be used or disclosed for a particular purpose. Schedule 1 of the Bill contains a number of principles. For the purposes of this brief the schedule will be referred to in terms of the principles (and their subparagraphs). Principle 2 addresses the identification of purposes that information will be used or disclosed for. Provided a purpose is identified it becomes a legitimate purpose under the Bill. Subparagraph 3 states that the identified purposes should be specified at or before the time of collection. Section 5(2) of the Bill states that the use of ‘should’ in schedule 1 indicates a recommendation and does not impose an obligation. Therefore, according to subparagraph 3, it is recommended but is not obligatory that disclosure occur. On the other hand, principle 3 addresses consent and appears to impose an obligation by stating that the knowledge and consent of the individual are required for the collection, use, or disclosure of personal information, except where inappropriate. Similarly subparagraph 2 appears to create something of an obligation by stating, “organizations shall make a reasonable effort to ensure that the individual is advised of the purposes for which the information will be used.” The relationship between these sections should be clarified and made consistent. CMA is pleased to note that principle 3 has been modified to define when, and only when, organizations may collect information without knowledge or consent. Section 7(1)(a) permits the collection of information without knowledge and consent when collection is clearly in the interests of the individual and consent cannot be obtained. The intent of this section could be made clearer, particularly in terms of who determines the “interests of the individual.” Otherwise this exception could give undesirable license to collect without knowledge or consent. The provision in section 7(1)(b) is more problematic. This section appears to favour withholding knowledge from an individual if such knowledge would compromise accuracy, defeat the purpose for collection or prejudice the use. In some instances it may well be that if an individual is provided with knowledge of the purposes for which information is collected and the uses to which it will be put, they may choose to withhold information rather than disclose it, and in doing so would clearly compromise accuracy, defeat the purpose for collection or prejudice the use the information will be put to. This is contrary to the principle found in principle 4.1 which recognizes that information should not be collected by misleading or deceiving individuals. The intent of this section should be far clearer and circumscribed in such a way as to make it clear that it is not permissible to withhold knowledge or not seek consent simply on the basis that if a person had knowledge they would not wish to disclose information. Section 7(1)(c) allows collection without knowledge or consent for journalistic, artistic or literary purposes. This provision is totally inappropriate in the case of health information. CMA Health Information Privacy Code The CMA Code is considerably more restrictive that Bill C-54. It recognizes that in the therapeutic context, health information is confided by or collected from patients under the patient presumption that it is necessary to meet his or her therapeutic needs. CMA also believes that the potential that health information may be subsequently collected, used, disclosed or accessed for other purposes without patient consent should be made known to patients before information is confided or collected for the primary therapeutic purpose. CMA further notes that it is not acceptable to withhold knowledge from patients deliberately out of concern that knowledge could inhibit them from confiding important information fully and truthfully. CMA limits the circumstances the nonconsensual collection of health information to those: 1. Permitted or required by legislation; 2. When ordered or decided by a court of law. Moreover, the CMA gives explicit direction to legislators with respect to the conditions under which legislation should permit or require health information collection (see section 3.6 of CMA Code). In the case of nonconsensual collection, the following conditions are stipulated: 1. The right of privacy has to be violated because the purposes could not be met adequately if patient consent is required; and 2. The importance of the purposes must be demonstrated to justify the infringement of the patient’s right of privacy in a free and democratic society. While Bill C-54 is clearly enabling the collection of information, it does not, in CMA’s opinion put sufficient emphasis on or provide protections that preserve privacy and confidentiality, especially in the medical context. D. Use Without Knowledge Or Consent Bill C-54 Once information has been collected and despite the, albeit inadequate, limits placed on collection without knowledge or consent, it can be put to even greater use than the purposes it has been collected for with or without knowledge or consent. Section 7(2) opens up dramatically the uses to which collected information may be put without either knowledge or consent. At a minimum and without little additional administrative effort, the enumerated grounds of section 7(2) (and 7(3))should be made known to an individual prior to their disclosure of information, which would be in keeping with the principle of openness and explicitness. Section 7(2)(a) allows use in connection with the investigation of an offence. In the medical context this might be problematic particularly if it is interpreted to impose an obligation. Generally, there is no obligation to assist in the investigation of an offence and indeed the fiduciary duty between patient and physician and the duty of confidentiality owed to the patient by the physician would suggest that physicians not offer information despite its usefulness. Section 7(2)(b) recognizes emergency situations. However, as worded, section 7(2)(b) would allow access to anyone’s information if it is for the purpose of acting in respect of an emergency threatening the life, health or security of an individual. The implications of this section should be carefully thought through. Do we really intend to give such a broad licence to access anyone’s information on the basis of an emergency. In CMA’s view there should be some limiting principle that takes into account the prevailing view that people generally are not required to go to the assistance of others (emergency or otherwise) and that information about oneself is considered worthy of protection against use or disclosure despite its potential benefit to others for example, genetic information or HIV, Hepatitis C status. Section 7(2)(c) is very problematic as it permits the use of “identifiable” information for a host of purposes, including statistical and research, when it is impractical to seek consent. Even though the Commissioner must be informed of the use before the information is used the Commissioner has no power to approve or reject the use, and since the use is legitimate under the Bill provided the Commissioner has been notified there would be no grounds open to the Commissioner to cause an audit to occur. This section gives significant scope to use information that has been collected without knowledge or consent and certainly in the case of health information is problematic. CMA Health Information Privacy Code The CMA Code makes a clear distinction between the primary purpose for the collection and use of health information and secondary purposes for its use. The key distinction between these two categories is that primary purposes relates to the provision of the health care benefit sought whereas secondary purposes are ends or aims that are not directly related to the provision of care. The CMA Code divides secondary purposes into two categories: 1. Secondary legislated purposes, those purposes that have been subjected to the legislative test specified in the Code and have subsequently been written into law; 2. Secondary nonlegislated purposes are any other purposes, such as education or research not governed by legislation, that meet the provisions of the CMA Code and the secondary nonlegislative test provided by the Code. The tests that CMA requires both to go through relate to: 1. Impact on privacy. 2. Impact on the patient-physician relationship, especially confidentiality and trust. 3. Impact on the willingness of patients to disclose information. 4. Impact on patients’ ability to receive care. 5. Evidence of broad public support for the measure. 6. The use will not exploit or compromise the trust of the patient-physician relationship. 7. Patient vulnerability will not be exploited. 8. Under most circumstances patients will be fully informed of the purpose and patient consent will be clearly voluntary. 9. Patient privacy will be intruded upon to the most limited degree possible. 10. Linkage of health information will be restricted and consented to by patients. In other words, CMA is not satisfied that any and all secondary purposes for the use of health information should be permitted. Rather, CMA seeks justification for the secondary use and assurance that the secondary use will neither impede nor undermine the patient-physician relationship and the provision of health care to the patient. Moreover, the CMA Code only permits use without consent if it is permitted or required by legislation or when ordered or decided by a court of law. The Advisory Council Report Like CMA, the Advisory Council Report makes distinctions among various types of uses. The report calls for legislation to clearly prohibit all secondary commercial use of personal health information. In addition, the Report recommends that there be provisions regulating secondary uses of non-identifiable health information and that such provisions should address privacy concerns surrounding the degree to which such data might be linked back to an identifiable individual. In this context, the Report recommends that legislation set clear limits on access to and use of health information by third parties outside the health care system. In addition the Report reviews the uses of health information for statistical and research purposes. The Report’s findings with respect to statistical use have already been discussed. In connection with research, the Report calls for a number of safeguards and restrictions: 1. Where the data sets used have a higher level of potential identifiability, “the general rule should be informed consent and stringent assurances about privacy protection and security arrangements are necessary before a researcher can have access to personally identifiable information.” 2. The Report recognizes that in some instances it may be impractical to obtain consent from patients. Whether in anonymous or identifiable form the Report requires that notice be given about the use of the information in either form. In the case of the use of identifiable information, the Report states that the research should be subject to independent ethics review with the onus on the person seeking to use the information without consent to demonstrate that: (a) a tangible public good of significant benefit will result; (b) consent is impossible to secure at a reasonable cost; (c) less identifiable data will not serve the same purpose; and (d) no harm can occur to any person directly or indirectly [note the above discussion on group privacy] as a result of this use of his or her personal information. E. Disclosure Without Knowledge Or Consent Bill C-54 The comments found under C. and D. above apply equally here. Section 7(3) adds further instances when collected information can be disclosed to others without knowledge or consent. CMA Code In the case of health information CMA takes a far more restrictive approach. In the case of use, disclosure or access the CMA Code states: The potential that health information, in whole or in part, may be subsequently collected, used, disclosed or accessed for other purposes without their consent, and what those purposes might be, must be made know to the patient by reasonable means before it is confided or collected for primary purposes. Moreover, the CMA Code recognizes that information disclosed by one organization is collected by another. The Code defines collection to mean: the act of accessing, receiving, compiling, gathering, acquiring or obtaining health information from any source, including third parties, and by any means. It includes information collected from the patient, as well as secondary collection of this information in whole or in part by another provider or user. The collecting organization should be bound by the provisions of the CMA Code, which generally requires consent for use for any purpose and always requires knowledge of the potential purposes that information will or must be put to prior to the information being disclosed. CMA’s Code states: Health information custodians must ensure that third parties privy to health information have adopted this Code or are bound by equivalent provisions. Finally, the CMA Code explicitly recognizes that information can be retrieved from a variety of sources to formulate records. Any and all such practices and the composite form developed are given the same degree of protection as that accorded the original data collected by or through the patient. F. Information Flow Within Organizations Bill C-54 Bill C-54 defines use to include, “the transfer of personal information within an organization.” Therefore, to the extent that Bill C-54 restricts the free flow of information it restricts in within an organization. In the health care context this is not a reasonable or desirable outcome. CMA Code The CMA Code recognizes that the free flow of health information is desirable to the extent that it furthers the provision of the health care benefit sought and that it occurs with patient consent. The CMA Code defines the primary purpose to mean: (i) Primary therapeutic purpose is the initial reason for a patient seeking or receiving care in the therapeutic context, and pertains to the delivery of health care to a particular patient with respect to the presenting health need or problem. It encompasses consultation with and referral to other providers on a need-to-know basis. (ii) Primary longitudinal purpose concerns developing composite health information about a particular patient, such as a detailed medical history, beyond direct application to the presenting health need or problem, in order to enhance ongoing care to that person. The Code goes on to state that: Health information collection, use, disclosure or access for the primary therapeutic and longitudinal purposes may be as extensive as necessary to fulfil these purposes and reflect the high level of trustworthiness and accountability of health professionals in the therapeutic context. And further states that: Security safeguards shall impede as little as possible health information collection, use, access and disclosure for primary purposes. Finally, in addressing consent the Code states: Consent to health information collection, use, disclosure and access for the primary therapeutic purpose may be inferred. Consent to subsequent collection, use, disclosure and access on a need-to-know basis by or to other physicians or health providers for this purpose, and for this purpose alone, may be inferred, as long as there is no evidence that the patient would not give express consent to share the information. G. Individual Access Bill C-54 Bill C-54 restricts the right of individual access to personal information. The grounds for denying access to information are inappropriate in the health care context. CMA Code The CMA Code follows the prevailing case law as it relates to medical records. Primarily this gives the patients a right of access to their record in all but very limited circumstances. These circumstances are, if there is a significant likelihood of a substantial adverse effect on the physical, mental or emotional health of the patient or substantial harm to a third party. The onus lies on the provider to justify denial of access. H. Accuracy and Amendment Bill C-54 Bill C-54 requires that information be as accurate, complete and up-to-date as possible and that it shall not be routinely updated unless this is necessary to fulfil the purpose for its collection. In so far as amendment is concerned, Bill C-54 permits amendment to the record in specified circumstances. CMA Code The CMA Code takes a different approach in light of the nature and purpose of health information. The Code recognizes that the “recording of statements of fact, clinical judgements and determinations or assessments should reflect as nearly as possible what has been confided by the patient and what has been ascertained, hypothesized or determined to be true using professional judgement.” In terms of amending the record in light of a patient’s request, the CMA Code seeks to preserve the original record but also note the patient’s concerns. To accommodate both requirements the CMA Code states: Patients who have reviewed their information and believe it to be inaccurately recorded or false have the right to suggest amendments and to have their amendments appended to the health information. I. Sensitivity Bill C-54 In a number of instances Bill C-54 and in particular schedule 1 recognize that medical records have a high level of sensitivity attached. Which in turns warrants special attention concerning consent, reasonable expectations, individual access and implicity, the degree of security that is appropriate. CMA Code The CMA Code seeks to recognize that while all health information is sensitive (when considered against other forms of information about individuals) there are also variations in the level of sensitivity in various aspects of the health record. The CMA Code defines the “sensitivity of health information” to refer to: the patient’s interest in keeping the information secret. It varies according to the nature of the information, its form, and the potential negative repercussions of its collection, use or disclosure on the patient’s interests. Under the Code’s consent provisions it is stated that: Although all health information is sensitive and should be treated as such, the more sensitive the health information is likely to be, given what is known about the circumstances or preferences of the patient, the more important it is to ensure that consent is voluntary and informed. With respect to security the Code states: The development of security safeguards with respect to levels of access for various users shall recognize the differences in the sensitivity of health information and permit access accordingly. V. Conclusions The increased capacity to collect, store, transfer, merge and access information coupled with trends that support increased use of and access to information have the potential to erode our traditional understanding and protection of privacy and confidentiality. The issues are complex and the choices we must make are difficult. Nevertheless, these issues should be squarely on the table and the choices that we make must be clear, transparent and defensible. Of paramount importance is that the public is not mislead into believing that their information is being protected or kept confidential when in fact it is not. Therefore, even to refer to Bill C-54 as the “Personal Information Protection and Electronic Documents Act” should be the subject of debate. Is the Bill truly about information protection or is it actually about permitting access to information? Bill C-54 presents one approach, an approach that values commerce and access. In CMA’s view the approach is totally inadequate when applied to health information. CMA also believes that the public would also find Bill C-54 inadequate. CMA presents a different approach, an approach that values privacy and the preservation of the trust and integrity of the patient-physician relationship. CMA believes that its approach would receive broad public support. Moreover, CMA believes that to the extent the CMA Code presents tests rather than conclusions, these tests should be administered in good faith prior to legislative initiatives related to health information or in the case of secondary usage of health information in general. CMA believes that its approach draws support from the Federal Advisory Council Report, which also recognizes the importance of preserving patient privacy and the confidentiality of the health record in an era of increased use of technology. Implicitly, the Report recognizes that the benefits of such technology cannot be realized if public support, based on assurance of privacy protection, cannot be secured. CMA urges this committee to implement CMA’s recommendations and in doing so provide the type of protection that health information deserves and that Canadians desire. VI. Summary of Recommendations That Bill C-54 be amended to incorporate specific provisions relating to health information and that the provisions of the CMA Code provide the basis of such provisions; and That the proposed rules for health legislation be subject to the legislative test found in CMA’s Code and formulated in light of this process; and That there be a clear definition of the information being accorded a right of privacy and that this definition, at least in the case of health information, include identifiable information, delinked information, anonymous information and any composite form produced when information is linked to any information about a person from any other source; and That, at least in connection with health information, the provisions of the Bill apply equally to the public and the private sectors.
Documents
Less detail

Primary care renewal

https://policybase.cma.ca/en/permalink/policy114
Last Reviewed
2017-03-04
Date
2003-08-20
Topics
Health care and patient safety
Resolution
GC03-27
That Canadian Medical Association encourage proper evaluation of primary care renewal to ensure that the renewal is improving access and health care.
Policy Type
Policy resolution
Last Reviewed
2017-03-04
Date
2003-08-20
Topics
Health care and patient safety
Resolution
GC03-27
That Canadian Medical Association encourage proper evaluation of primary care renewal to ensure that the renewal is improving access and health care.
Text
That Canadian Medical Association encourage proper evaluation of primary care renewal to ensure that the renewal is improving access and health care.
Less detail

Proposed Amendments to the Criminal Code of Canada (Impaired Driving) : Response to Issue Paper of the Standing Committee on Justice and Human Rights

https://policybase.cma.ca/en/permalink/policy1983
Last Reviewed
2018-03-03
Date
1999-03-05
Topics
Health care and patient safety
Population health/ health equity/ public health
  2 documents  
Policy Type
Parliamentary submission
Last Reviewed
2018-03-03
Date
1999-03-05
Topics
Health care and patient safety
Population health/ health equity/ public health
Text
The CMA believes that comprehensive long-term efforts that incorporate both deterrent legislation and public awareness and education constitute the most effective policy in attempting to reduce the number of lives lost and injuries suffered in crashes involving impaired drivers. The CMA supports a multidimensional approach to the issue. The CMA therefore recommends the following: * developing awareness campaigns and education programs, particularly at the high school level where the pattern of alcohol misuse is often established; * retaining the curative treatment provision found in Section 255(5) of the Criminal Code; * providing comprehensive treatment suited to the needs of the individual person. Those repeatedly convicted of impaired driving should be considered for mandatory assessment; * seizing or impounding the driver’s vehicle for the length of the license suspension if an individual is charged with impaired driving while his or her licence is suspended because of a previous impaired driving conviction; * lowering the legal BAC limit to 50 mg%; and * creating probationary licence systems for new drivers that would make it an offence to drive a motor vehicle during this probationary period with any measurable alcohol in the body. I. Introduction The Canadian Medical Association is the national voice of Canadian physicians. Our mission is to provide leadership for physicians and to promote the highest standard of health and health care for Canadians. The CMA is a voluntary professional organization representing the majority of Canada's physicians and comprising 12 provincial and territorial divisions and 43 affiliated medical organizations. On behalf of its 45,000 members and the Canadian public, CMA performs a wide variety of functions, including advocating health promotion and disease and accident prevention policies and strategies. It is in this capacity that we present our position on proposed amendments to the Criminal Code sections on impaired driving. The CMA welcomes this opportunity to comment on the issue of drinking and driving and the safety of our public roadways. The injuries and deaths resulting from impaired driving present a major public health concern. Physicians see the consequences of impaired driving in their practices. In 1996, 3,420 persons were killed in motor vehicle crashes. Alcohol was involved in 39.7% of those fatalitiesi. In CMA policy documents and publications like the Physicians’ Guide to Driver Examination, the CMA has advocated for measures to reduce injury and death resulting from drinking and driving. The CMA has previously endorsed legislation aimed at reducing the incidence of drinking and driving, including the use of the breathalyser test, more severe penalties for those convicted and the taking of a mandatory blood sample if the individual is unable to provide a breath sampleii. Several of CMA’s provincial and territorial divisions have also issued policy statements on impaired driving (Appendix 1). II. Multidimensional Approach From 1987 to 96, there was a general decline in the percentage of fatally injured drivers who had been drinkingiii. In 1996, of tested drivers fatally injured in motor vehicle crashes, 41.6% had been drinking (with a Blood Alcohol Content (BAC) over 1 mg%>) while 34.9% were legally impaired (BAC >80 mg%)iv. CMA believes that to reduce the number of fatalities and injuries even further, a comprehensive, multidimensional approach encompassing the expertise, resources and experience of health professionals and all levels of government is required. This approach encompasses: (1) public education, (2) medical assessment and treatment interventions and (3) legislation. 1. Public Education Drinking and driving must be viewed as socially unacceptable behaviour and until this change in attitude occurs, the judicial system cannot be completely effective in controlling the drinking and driving patterns of individuals. Education and information programs which increase society’s awareness of the consequences of using alcohol in combination with driving are integral parts of any attempt to reduce injuries and fatalities. The CMA supports and recommends the development of awareness campaigns and education programs, particularly at the high school level where the pattern of alcohol misuse is often established. 2. Medical Assessment and Treatment Interventions CMA shares the belief of specialists in the field of addiction medicine that punishment in the form of incarceration will not solve the problem of impaired drivingv. Rather, in addition to public education campaigns and criminal law sanctions, government must create and fund appropriate assessment and treatment interventions. Impaired drivers may be occasional users of alcohol. They may also suffer from the disease of Substance Dependence. In the case of alcohol, this disease is commonly known as alcoholism. There are several assessment tools and screening tests to diagnose chronic alcoholismvi. The term “Hard Core” drinking driver has also been coined to describe impaired drivers who repeatedly drive after drinking, often with a high BAC of 150 mg% or more. They are also resistant to change despite previous actions, treatment or education effortsvii. Although roadside surveys have revealed a general decrease in the overall level of drinking-driving in Canada, drivers with very high levels of BAC (over 150 mg%) seemed immune to this trendviii. “Hard Core” drinking drivers are most likely suffering from substance dependence or alcoholism, a condition requiring significant treatment interventionix. Physicians, in their educational capacity, can assist in establishing programs in the community aimed at the recognition of the early signs of alcohol abuse or dependency. These programs should recognize the chronic, relapsing nature of alcohol addiction as a disease. There is also good evidence that physician interactions like the Alcohol Risk Assessment and Intervention program developed by the College of Family Physicians of Canada can have a positive impact on the behaviours of moderate drinkersx. Another tool to aid physicians in the assessment of patients who drive impaired is the CMA publication, The Physicians’ Guide to Driver Examination. The Physicians’ Guide to Driver Examination is a collection of guidelines and expert opinions designed to help physicians assess their patients’ medical fitness to drive. The Physicians’ Guide discusses the impact of a variety of medical conditions on driving, including alcohol use, abuse and dependency. The Physicians’ Guide underlines the fact that alcohol-induced impairment is the single greatest contributor to fatal motor vehicle accidents in Canadaxi. The Physicians Guide to Driver Examination takes a strong stance on the status of drivers with chronic alcohol problems. It recommends that a chronic alcohol abuser should not be allowed to drive any type of motor vehicle until the patient has been assessed and received treatment. The Physicians' Guide to Driver Examination is currently under revision with an anticipated distribution date in the fall of 1999 for the sixth edition. (a) Discharge for Curative Treatment The Standing Committee on Justice and Human Rights has asked whether it is appropriate under Section 255(5) of the Criminal Code to allow the courts to discharge an impaired driver who is in need of “curative treatment” by placing that person on probation with a condition that he or she attends such treatment. Section 255(5) of the Criminal Code reads: Notwithstanding subsection 736(1), a court may, instead of convicting a person of an offence committed under section 253, after hearing medical or other evidence, if it considers that the person is in need of curative treatment in relation to his consumption of alcohol or drugs and that it would not be contrary to the public interest, by order direct that the person be discharged under section 730 on the conditions prescribed in a probation order, including a condition respecting the person’s attendance for curative treatment in relation to his consumption of alcohol or drugs. The CMA believes that Section 255(5) should remain within the Criminal Code. Section 255(5) is an important recognition within the punitive framework of the Criminal Code of the necessary medical and rehabilitative elements at stake in the issue of impaired driving. CMA believes that there are sufficient safeguards within the wording of Section 255(5) to conclude that it does not invite misuse. There are several hurdles to meet in Section 255(5) before the court may award curative treatment. First, the court hears “medical or other evidence”. In essence, the granting of the curative treatment order is not merely dependent on the pleas of the impaired driver. Second, the court must be satisfied that the discharge is not contrary to the public interest. In determining what is in the public interest, the courts look to the accused’s motivation and good faith, whether he or she was already subject to a driving prohibition, the risk of recidivism, previous convictions for impaired driving, prior curative discharges and the circumstances of the offence, including consideration of whether the accused was involved in an accident which caused death, bodily harm or significant property damagexii. Finally, it is highly unlikely that the “curative treatment” at issue in Section 255(5) would be involuntary or enforced against the wishes of the accused because his or her motivation or good will in pursuing treatment as an alternative to conviction is a key factor in the court’s decisionxiii. The CMA recommends retaining the curative treatment provision found in Section 255(5) of the Criminal Code. (b) Assessment and Rehabilitation Rehabilitation can occur through education and treatment programs designed for impaired drivers. The CMA believes it is important to provide comprehensive treatment suited to the needs of the individual person. The CMA recognizes that as an exception to the general rule that medical interventions should be voluntary, individuals repeatedly convicted of the offence of impaired driving should be considered for mandatory assessment. This mandatory assessment, followed by medical recommendations for appropriate treatment, would not only benefit those with a chronic alcohol problem but could also help to reduce the incidence of drunk driving incidents attributable to repeat offenders. Physicians have the training, knowledge and expertise to assist in developing alcohol assessment, treatment and rehabilitation programs. Currently, nine jurisdictions have some form of mandatory assessment and rehabilitation programsxiv. The CMA recommends providing comprehensive treatment suited to the needs of the individual person. Those repeatedly convicted of impaired driving should be considered for mandatory assessment. 3. Legislation (a) Impoundment On the issue of whether the current penalties provide sufficient deterrence, the CMA is in general agreement with the impoundment measures currently found in eight provincial and territorial jurisdictionsxv. CMA would encourage jurisdictions that do not have these impoundment programs to consider enacting them. Since 1989, the CMA has recommended that if an individual is charged with impaired driving while his or her licence is suspended because of a previous impaired driving conviction, the suspended driver’s vehicle should be seized or impounded for the length of the license suspension. (b) Blood Alcohol Content (BAC) In response to the question of whether the legal BAC limit should be lowered from 80 mg%, since 1988 the CMA has supported 50 mg% as the general legal limit. Studies suggest that a BAC limit of 50 mg% could translate into a 6% to 18% reduction in total motor vehicle fatalities or 185 to 555 fewer fatalities per year in Canadaxvi. A lower limit would recognize the significant detrimental effects on driving-related skills that occur below the current legal BACxvii. Finally, the CMA notes that many jurisdictions have 50 mg% as the limit for impairmentxviii. The CMA recommends lowering the legal BAC limit to 50 mg%. The CMA has also supported the 1987 recommendation of the former Standing Committee of National Health and Welfare on Alcohol and Drug Abuse in Canada that the provinces establish a probationary or graduated licence system for new drivers that would make it an offence to drive a motor vehicle during this probationary period with any measurable alcohol in the body. Several studies have remarked on the significant reduction in casualty collisions when there is a 0 BAC limit for novice drivers xix. The CMA notes that several provinces have instituted such a graduated licensing systemxx. The CMA supports probationary licence systems for new drivers that would make it an offence to drive a motor vehicle during this probationary period with any measurable alcohol in the body. (c) Police Powers On the issue of police powers to demand breath, blood or saliva samples for alcohol and/or blood testing, the CMA reiterates its earlier support for mandatory blood alcohol testing as outlined in the Criminal Code. At the request of CMA, physicians and other health care workers who take blood samples under this law are specifically protected from criminal and/or civil litigation, but it is not an offense for these health care workers to refuse to take a blood samplexxi. III. Conclusion The CMA believes that comprehensive long-term efforts that incorporate both deterrent legislation and public awareness and education campaigns constitute the most effective policy in attempting to reduce the number of lives lost and injuries suffered in crashes involving impaired drivers. It is prefererable to use countermeasures that prevent the occurrence of motor vehicle crashes involving impaired drivers rather than those that deal with the offender after the fact. The multifaceted nature of the issue of impaired driving requires multidimensional countermeasures as part of a comprehensive policy involving all levels of government, private organizations, communities and individuals. The CMA urges all Canadians to support such efforts to reduce the prevalence of drinking and driving. IV. Appendix 1 A List of Some Policy Statements and Resolutions on Impaired Driving from CMA Provincial and Territorial Divisions: * Alberta Medical Association, 1983: That the AMA recommend to the Government of Alberta that it take whatever steps are necessary to ensure that there are adequate penalties for impaired driving and that such penalties are well enforced. * New Brunswick Medical Society: February, 1988.“Statement on Driving Impairment” October, 1992. “NBMS Position Statement on Alcohol” * Northwest Territories Medical Association: Endorsed June, 1998. “Strategy to Reduce Impaired Driving in the Northwest Territories: Interagency Working Group on Impaired Driving. June, 1996.” * Ontario Medical Association: November, 1994. “An OMA Position Paper on Drinking and Driving”. V. Endnotes i.Traffic Injury Research Foundation (TIRF) (1998).Strategy to Reduce Impaired Driving 2001: STRID 2001 Monitoring Report: Progress in 1996 and 1997. Ottawa: Traffic Injury Research Foundation at 25, 28. ii.Canadian Medical Association (1989). Substance Abuse and Driving: A CMA Review. Ottawa: Canadian Medical Association at 3. 3. Mayhew, D.R., S.W. Brown and H.M. Simpson. (1998) Alcohol Use Among Drivers and Pedestrians Fatally Injured in Motor Vehicle Accidents: Canada, 1996. Ottawa: Traffic Injury Research Foundation at 19. iv.Ibid at 13-14. v. Hajela, Raju CD, MD, MPH, CCFP, CASAM, FASAM, President of the Canadian Society of Addiction Medicine. Letter to CMA dated January 13, 1999. vi.American Psychiatric Association (1994). Diagnostic and Statistical Manual of Mental Disorders, DSM-IV. Washington, D.C.: American Psychiatric Press. vii. Beirness, D.J., H.M. Simpson, and D.R. Mayhew (1998). Programs and policies for reducing alcohol-related motor vehicle deaths and injuries. Contemporary Drug Problems 25/Fall 1998. See also the Century Council (1998) National Hardcore Drunk Driver Project. http://www.dwidata.org. viii. Beirness, D.J., Mayhew, D.R., Simpson, H.M. and Stewart, D.E. (1995) Roadside surveys in Canada: 1974-1993. In Kloeden, C.N. and McLean, A.J. (eds). Alcohol, Drugs and Traffic Safety-T’95.Adelaide, Australia:NHMRC Road Accident Research Unit, University of Adelaide, pp. 179-184 as cited in Mann, Robert E., Scott Macdonald, Gina Stoduto, Abdul Shaikh and Susan Bondy (1998) Assessing the Potential Impact of Lowering the Blood Alcohol Limit to 50 MG % in Canada. Ottawa: Transport Canada, TP 13321 E at 14-15. ix. Hajela, note 5 at 2. x. Brison, Robert J., MD (1997). The Accidental Patient. Canadian Medical Association Journal, 157 (12) 1661-1662. xi. Canadian Medical Association (1991).Physicians' Guide to Driver Examination. Ottawa: Canadian Medical Association at 51. xii. R v. Storr (1995), 14 M.V.R. (3d) 34 (Alta. C.A.). xiii. Ibid. xiv.Traffic Injury Research Foundation (TIRF), note 1 at 12. xv.Ibid. xvi. Mann et al., note 8 at 54. xvii. Moskowitz, H. and Robinson, C.D. (1988). Effects of Low Doses of Alcohol on Driving Skills: A Review of the Evidence. Washington, DC: National Highway Traffic Safety Administration, DOT-HS-800-599 as cited in Mann, et al., note 8 at page 12-13. xviii.Mann et al., note 8 at 24. xix.Hingson, R., Heeren, T. and Winter, M. (1994) Lower legal blood alcohol limits for young drivers. Public Health Reports, 109, 738-744 as cited in Mann et al., note 8 at 36. xx.Mann et al., note 8 at 29. xxi.Canadian Medical Association, note 2 at 3.
Documents
Less detail

Protecting the national blood supply from the West Nile Virus : CMA Submission to House of Commons Standing Committee on Health

https://policybase.cma.ca/en/permalink/policy1964
Last Reviewed
2010-02-27
Date
2003-02-19
Topics
Population health/ health equity/ public health
Health care and patient safety
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2010-02-27
Date
2003-02-19
Topics
Population health/ health equity/ public health
Health care and patient safety
Text
INTRODUCTION On behalf of its more than 54,000 members, the Canadian Medical Association (CMA) is pleased to provide the House of Commons Standing Committee on Health with recommendations in regard to protecting the national blood supply from the West Nile Virus (WNV). As physicians, we understand both the perceived and actual risks associated with blood-borne diseases and the impact on individuals, families and communities. BACKGROUND WNV has emerged in North America, presenting a threat to public, animal and equine health. The most serious human manifestation of WNV infection is fatal encephalitis (inflammation of the brain). WNV is spread by the bite of an infected mosquito and can infect people, many types of birds, horses and some other animals. Most people who become infected with WNV will have either no symptoms or only mild ones. However, on rare occasions, WNV infection can result in severe and sometimes fatal illnesses. Certain people, including seniors, the young and those with weak immune systems, are at greater risk for serious health effects. In 2002, West Nile Virus was documented in five provinces (Manitoba, Nova Scotia, Ontario, Quebec and Saskatchewan). Further to this, the United States Centre for Disease Control and Prevention reported the first documented cases of person-to-person West Nile Virus transmission through organ transplantation, blood and blood product transfusion and possibly breastfeeding. It is imperative that the risk associated with the transmission of West Nile Virus through blood transfusions be minimized. We understand that the Canadian Blood Services (CBS) is working towards a validated laboratory test which may be available by the next mosquito season and that in the absence of this test there are a number of contingency plans. It appears that the CBS and Hema Quebec are maintaining vigilance and maximizing efforts towards controlling contamination through blood. This is commendable. We believe that these efforts are one component of what is required to maintain the health and safety of Canadians from the spread of known and emerging diseases. A second component is to ensure that communication about WNV to the public is accurate, timely and consistent. Effective risk communication is imperative not only to promote a safe blood supply, but also to manage risk perception associated with a positive test for WNV. A comprehensive approach is required to protect the public from emerging health problems such as the WNV. A strong public health infrastructure is necessary to ensure that governments are able to protect and promote health and to prevent illness. This involves prevention, early detection, containment, communication and information dissemination. STRENGTHENING PUBLIC HEALTH Through its public health infrastructure, society protects and promotes health and works to prevent illness, injury and disability. In today’s world these public health functions require an increasingly specialized and well-trained workforce; sophisticated surveillance, monitoring and information systems; and adequate and continuously available laboratory support. Its ultimate effectiveness, however, depends upon the ability of the system to communicate crucial information and health advice to the right professionals in real time, when they need it. The devastating impact of the failure to effectively communicate essential information is evident in examples as diverse, yet dramatic, as the tragedy of Walkerton and the untimely death of Vanessa Young. In both cases the information health professionals needed to make optimum decisions was not accessible in a reliable and timely manner. Reports indicate that across this country public health workers are stretched to the limit to perform routine work. The public health infrastructure is put to the test further whenever there is a disaster, large or small, in Canada and, not withstanding best efforts, it does not always pass. The public health system is also challenged by the potential for a disconnect in communications between differing jurisdictions that may be found when, for example, First Nations communities under federal jurisdiction overlap areas of provincial/territorial jurisdiction. In the aftermath of 9/11 and the anthrax scare in the United States, Canadians must be assured of a rapid, knowledgeable, expert response to emergency public health challenges. Commissioner Roy Romanow suggests in the recent report of the Royal Commission on the Future of Health Care that “a portion of the proposed new Primary Health Care Transfer should be targeted to expanding efforts by provinces and territories to prevent illnesses and injuries, promote good health, and integrate those activities with primary health care.” The Fifth Report of the Senate Committee on Science, Technology and Social Affairs, chaired by Senator Kirby, notes that “The major problem with public health programs is that funding is low, and usually unstable or inconsistent. As a result, the public health infrastructure in Canada is under considerable stress and has deteriorated substantially in recent years.” The Senate Committee recommended that the federal government, “ensure strong leadership and provide additional funding of $200 million to sustain, better coordinate and integrate the public health infrastructure in Canada as well as relevant health promotion efforts.” During the First Ministers’ meeting in September 2000, the First Ministers committed to strengthening their investments and commitments to public health, including the development of strategies and policies that recognize the determinants of health, enhance disease prevention and improve public health. They made several commitments towards achieving the goal, including: * Promoting those public services, programs and policies that extend beyond care and treatment and which make a critical contribution to the health and wellness of Canadians; * Addressing key priorities for health care renewal and supporting innovations to meet the current and emerging needs of Canadians; * Reporting regularly to Canadians on health status, health outcomes, and the performance of publicly funded health services, and the actions taken to improve these services. In 1999, the Auditor General found Health Canada unprepared to fulfill its responsibilities in public health; communication between multiple agencies was poor and weaknesses in the key surveillance system impeded the effective monitoring of communicable and noncommunicable diseases and injuries. In 1997, Justice Horace Krever reported that the “public health departments in many parts of Canada do not have sufficient resources to carry out their duties.” RECOMMENDATIONS The capacity of the public health care sector to deliver disease prevention and health promotion programs in Canada is currently inadequate, and its ability to respond varies from coast to coast. This is due to a lack of trained professionals and a lack of operational funds. Enhanced commitments are needed from governments at all levels to ensure that adequate human resources and infrastructure are in place to respond to public health issues when they arise. This includes the expansion of the public health training programs to enhance the resources in this field. The ability of the public health system to respond to these issues has a direct impact on the wellbeing of the people of Canada in a manner as important as the ability of the acute care system to respond to medical emergencies. Therefore the CMA recommends that: The federal government invest in human resources and infrastructure needed to develop an adequate and effective public health system capable of responding to emerging public health issues. The public health system is complex and multifactorial. It is therefore imperative that different departments and sectors coordinate and communicate effectively to coordinate efforts and avoid duplication. The development of an adequate surveillance system and consideration of mandatory reporting of WNV infections in humans is one component of this requirement. In addition to collecting these data, a more extensive communication and dissemination plan should be developed to enhance the impact of skilled professionals, programs and policies. Responsible messaging should be developed in a timely manner, for the public and for individuals who are detected to have (or previously had) a WNV infection. Such messaging must carefully balance public awareness of risk against threats to the CBS/Hema Quebec donor pool and the creation of anxiety in people who need to use blood or blood products. It is essential that the federal government take a leadership role to ensure that the communication tools and information technology necessary to enable a more rapid and informed response to situations such as identification of emerging diseases in the blood supply, natural disasters, disease outbreaks, newly discovered adverse drug reactions, and man-made disasters or bio-terrorism are accessible in real time in all regions of the country. In its pre budget submission, the CMA called on the government to strengthen the public health system to ensure that governments are able to protect and promote health and to prevent illness. This involves the detection of emerging health problems, like West Nile Virus transmission, as well as containment, communication and information dissemination. Therefore the CMA recommends that: The federal government provide a one-time infusion of $30 million for the creation of a R.R.E.A.L (Rapid, Reliable, Effective, Accessible and Linked) Health Communication and Coordination Initiative which would strengthen Canada’s public health infrastructure and enhance coordination and communication amongst all levels of government, public health officials, health educators, community service providers, physicians and organizations such as the Canadian Blood Service/Hema Quebec, Canadian Public Health Association and the Canadian Medical Association.
Documents
Less detail

Putting Patients First : Comments on Bill C 6 (Personal Information Protection and Electronic Documents Act) : Submission to the Senate Standing Committee on Social Affairs, Science and Technology

https://policybase.cma.ca/en/permalink/policy1979
Last Reviewed
2019-03-03
Date
1999-11-25
Topics
Ethics and medical professionalism
Health care and patient safety
Health information and e-health
  2 documents  
Policy Type
Parliamentary submission
Last Reviewed
2019-03-03
Date
1999-11-25
Topics
Ethics and medical professionalism
Health care and patient safety
Health information and e-health
Text
CMA commends the federal government for taking this important first step that begins the debate on privacy and the protection of personal information. The issues are complex and the interests at stake significant. CMA welcomes the opportunity to provide comments on Bill C-6 and hopes that its input will strengthen the Bill by ensuring that patient privacy and the confidentiality of medical records are adequately protected. CMA’s chief concern with Bill C-6 is the inadequacy of its provisions to protect the right of privacy of patients and the confidentiality of their health information. The right of privacy encompasses both the right to keep information about ourselves to ourselves if we so choose and to exercise control over what subsequently happens to information we confide in trust for the purpose of receiving health care. In recent years, this right, and the ability of physicians to guarantee meaningful confidentiality, have becoming increasingly threatened. Computerization of health information facilitates easy transfer, duplication, linkage and centralization of health information. Captured in electronic form, patient information is potentially more useful for the purpose of providing care. However, thus captured, it also becomes much more valuable and technically accessible to various third parties -- private and public, governmental and commercial -- wishing to use this information for other purposes unrelated to providing direct care. An additional concern is that the demand for health information, referred to by some commentators as ‘data lust’, is growing, partly as a consequence of ‘information hungry’ policy trends such as population health. There is also a disturbing tendency toward ‘function creep’, whereby information collected for one purpose is used for another, often without consent or even knowledge of the individual concerned and without public knowledge or scrutiny. Furthermore, initiatives concerning health information technology tend to be dominated by those who seek access to this information for secondary purposes. From this perspective, privacy may appear less as a fundamental right than as a hindrance or even roadblock. As we move further into the information age there is some danger that we will become so spell-bound by the promise of information centralization and database linkages that we lose sight of the patients who confided this information or reduce them to impersonal ‘data subjects’. To avoid this danger and the allure of the technology we need to ground the application of information technology and practices in well-tested, enduring principles. We need to put privacy first rather than treat it as a nuisance or impediment. Rules and regulatory regimes concerning health information should be based on the principle of patient privacy because ultimately health information technology is not about ‘bits and bytes’ or ‘data’ or even ‘data subjects’ but about patients, and patients deserve to be treated with respect and dignity and to have their wishes and choices valued and respected. If we are to put patients first the right of privacy must be given primacy in rules concerning health information. This does not mean that this right is absolute. What it does mean is that the burden of proof must rest with those whose purposes, however compelling they may be, encroach upon the right of privacy. It means that we value patient privacy at least enough to demand explicit justification of any proposal that would diminish privacy. Bill C-6 begins with the right premise: that “rules to govern information collection, use and disclosure” should recognize the “right of privacy”. However, it fails to recognize the special nature of health information and to tailor its provisions accordingly. In consequence there is confusion and uncertainty about Bill C-6's application to health care. Even more seriously, however, Bill C-6 fails to recognize that health information requires stronger or greater privacy protection than other types of information. The inadequacy of Bill C-6 for health care is not surprising because clearly it was not drafted with health information in mind. Rather, it is written from the perspective of encouraging commerce. It appears to have access to information as its dominant value. The world of health care is very different from that of commerce and consequently requires distinct rules that are more protective of privacy. Confiding information to your physician under the trust of the patient-physician relationship is not on par with giving your address to a salesclerk when you purchase a toaster or rent a movie. Health information is special by nature. Canadians know this. In a recent Angus Reid poll commissioned by CMA Canadians told us loudly and clearly that they regard their health information as especially sensitive. However, the obvious sensitivity of health information is not the only thing that makes it special and in virtue of which it warrants distinct rules to strengthen privacy protection. It is important to recognize that this information is typically collected under the trust patients vest in their physicians. Patients confide their information for the purpose of receiving care and in the expectation that it will be held in the strictest confidence. This purpose, and the preservation of this trust, should be given primacy in rules concerning health information. It is also important to recognize that the trust under which patients confide in their physicians is fundamental to the patient-physician relationship. If patients can not trust their physicians to protect their information and keep it secret they will not confide it as freely as they do. In consequence, the ability of physicians to provide the care needed would be severely diminished. Rules relating to health information must be developed in recognition of its special nature and the circumstances of trust and vulnerability in which it is initially collected or confided. Patients confide in their physicians for the purpose of receiving care. The potential that the information thus confided may subsequently be used for other purposes must not impede the therapeutic purpose or diminish the trust and integrity of the patient-physician relationship. In recent years the secondary use of information for purposes other than those for which it was collected has been increasing without adequate oversight or public knowledge. This ‘function creep’ undermines the trust of patient-physician relationship. Collection and use beyond the therapeutic context and for purposes unrelated to the provision of direct care should be subjected to rigorous scrutiny before they are permitted to occur. To the extent that they are permitted to occur without patient consent they should be explicitly authorized in legislation to ensure transparency and adequate oversight. Putting patients first means ensuring that health information, in all but exceptional and justifiable circumstances, is used only under the strict control of the patient. The patient must be able to exercise control through voluntary, informed consent. Moreover, a distinction must be made between a patient’s right to know what can or must happen to health information and the right to consent to such use. Bill C-6 permits the collection, use and disclosure of information without knowledge or consent on grounds such as expediency, practicality, public good, research, offence investigation, historic importance and artistic purpose. The laxness and breadth of these exemptions as applied to health information is unacceptable. These uses, without the patient’s consent (or even knowledge), reduce the patient to a means to someone else’s end, however worthwhile that end may be. Moreover, the absence of consent (or even knowledge) undermines the integrity of the patient-physician relationship and has the potential to erode the trust patients have in their physicians - a trust that is essential to patients’ willingness to provide the complete information needed to provide them with care. CMA has developed and adopted a Health Information Privacy Code (Appendix A) in recognition of the special nature of health information and to give primacy to patients and to the right of privacy. This Code begins from the same starting point as Bill C-6, the Canadian Standards Association (CSA) Code which the Bill includes as Schedule 1. However, unlike Bill C-6, the CMA Code tailors the CSA Code to the specific circumstances of health information. The CMA Health Information Privacy Code, therefore, is able to address issues specific to health information that Bill C-6 either fails to address or, even worse, exacerbates. In light of the clear deficits in Bill C-6 and the inadequate protection of patient privacy and health information confidentiality, CMA urges this committee to accept the recommendations put forward in this brief to strengthen the Bill’s provisions for protecting privacy and to accept the amendment (Appendix B) CMA has prepared to give effect to these recommendations. CMA believes that Canadians desire and deserve no less than this as concerns the right of privacy with respect to health information. I. Introduction The Canadian Medical Association is the national voice of Canadian physicians. Our mission is to provide leadership for physicians and to promote the highest standard of health and health care for Canadians. The CMA is a voluntary professional organization representing the majority of Canada's physicians and comprising 12 provincial and territorial divisions and 43 affiliated medical organizations. On behalf of its 46,000 members and the Canadian public, CMA performs a wide variety of functions, including addressing the emerging issue of electronic health information and confidentiality and privacy. It is in this capacity that we present our position on Bill C 6, The Personal Information Protection and Electronic Documents Act. CMA commends the federal government for taking this important first step of beginning the debate on privacy and the protection of personal information. The issues are complex and the interests at stake significant. CMA welcomes the opportunity to provide comments on Bill C-6 and hopes that its input will strengthen the Bill by ensuring that patient privacy and the confidentiality of medical records are adequately protected. In preparing this brief CMA has had the benefit of the final report of the federal Advisory Council on Health Infostructure, Canada Health Infoway: Paths to Better Health: Final Report. (“Advisory Council Report”) Where appropriate, CMA cites the findings contained in the Report. CMA wishes to underscore the key themes of its brief: A. Health information is special by its nature. Rules relating to health information must be developed in recognition of its special nature. Ensuring protection of privacy and confidentiality of the patient record must take precedence over other considerations. Bill C-6 fails to do this. Bill C-6 is written from the perspective of encouraging commerce. It appears to have access to information as its dominant value. The world of health care is very different from that of commerce and consequently requires distinct rules. B. Typically, health information is confided in the context of the therapeutic relationship and under the trust upon which this relationship is built. Rules concerning health information -- and in particular its collection, disclosure and use for purposes unrelated to the provision of direct care -- must be consistent with the expectations of patients about confidentiality and must not exploit the trust patients have in their physicians or compromise the ability of physicians to earn and maintain this trust. C. Health information must, in all but exceptional and justifiable circumstances, be used only under the strict control of the patient. The patient must be able to exercise control through voluntary, informed consent. Moreover, a distinction must be made between a patient’s right to know what can or must happen to health information and the right to consent to such use. Bill C-6 permits the collection, use and disclosure of information without knowledge or consent on grounds such as expediency, practicality, public good, research, offence investigation, historic importance and artistic purpose. The laxness and breadth of these exemptions as applied to health information is unacceptable. These uses, without the patient’s consent (or even knowledge), reduce the patient to a means to someone else’s end, however worthwhile that end may be. Moreover, the absence of consent (or even knowledge) undermines the integrity of the patient-physician relationship and has the potential to erode the trust patients have in their physicians - a trust that is essential to patients’ willingness to provide the complete information needed to provide them with care. D. The root of most of the problems in applying Bill C-6 to health care information is its failure to distinguish among purposes for the collection, use and disclosure of health information. In particular, the Bill fails to distinguish between the primary purpose, which is to deliver care to and for the benefit of an individual patient, and secondary purposes, which are not for the direct benefit of the patient (and indeed may even use the patient’s information to his or her detriment). Provisions to protect privacy should give recognition to the difference between these purposes and should not hinder the ability of physicians and others to provide care consistent with the patient’s wishes. Moreover, the Bill has no effective mechanism to distinguish legitimate purposes, which should be permitted, from illegitimate purposes, which should not, notwithstanding the limitation to “purposes that a reasonable person would consider are appropriate in the circumstances” in Section 5(3). E. In recent years the secondary use of information for purposes other than the purpose for which it was collected has been increasing without adequate oversight or public knowledge. This ‘function creep’ undermines the trust of patient-physician relationship. Collection and use beyond the therapeutic context and for purposes unrelated to the provision of direct care should be subjected to rigorous scrutiny before they are permitted to occur. To the extent that they are permitted to occur without patient consent they should be explicitly authorized in legislation to ensure transparency and adequate oversight. This Brief will first look at the apparent rationale of Bill C-6 and its potential application to health information. The brief will then describe why CMA considers health information to be special in nature and worthy of special protection. Finally, the brief reviews the difference in approach between Bill C-6 and CMA’s Health Information Privacy Code to illustrate that Bill C-6 provides inadequate protection to patient privacy and medical confidentiality. II. Rationale and Scope of Bill C-6 A. Rationale of Bill C-6 The driving force behind Bill C-6 is the support and promotion of electronic commerce. The second part of the Bill is devoted to permitting electronic versions of documents and signatures to be legitimate or ‘originals’ if the provisions of the Act are followed. Part 2 of the Bill is quite distinct from Part 2 and both parts could stand alone as separate pieces of legislation. Part 2 simply allows electronic versions of documents and signatures to be recognized as legitimate. On its face, this has little to do with the protection of personal information except to the extent that storage of documents in electronic form provides greater ability to access, link and merge information. Certainly, the Bill appears to draw on this connection by including, in its statement of purpose, the provision of a right of privacy in an era in which technology increasingly facilitates the collection and free flow of information. Part 1 concerns all forms of personal information, electronic and otherwise. It gives some protection to personal information by requiring consent in some instances. In CMA’s view, a fundamental difficulty with Part 1 and with the Bill in general is that its goal is to promote commerce and thus all information is implicitly considered as falling within the ‘commercial’ realm. In the case of health information this is surely not the case or the only consideration. Moreover, this creates a clash of values when applied to a health care system that is a public system. The Advisory Council Report takes a firm stand on this issue and states that legislation respecting the privacy protection of health information, “should also contain a clear prohibition against all secondary commercial use of personal health information.”Moreover, Bill C-6 fails to distinguish and priorize different purposes for collecting, using and disclosing information and in doing so treats all purposes as more or less equal and subject to the same rules. CMA takes a quite a different view when it comes to health information and will expound its view throughout this brief. B. Scope - Application to Health Records CMA has argued from the outset that C 6 (and its predecessor C 54) will apply to some health information. This view now appears to be widely accepted. Nevertheless, it is unclear as to what extent Bill C 6 will apply to health records. The full name of the Act states, in part: An Act to support and promote electronic commerce by protecting personal information that is collected, used or disclosed in certain circumstances . . . . What are these circumstances? Section 4(1) states that Part 1 (the part protecting personal information) applies in respect of personal information that: (a) the organization collects, uses or discloses in the course of commercial activities; or (b) is about an employee of the organization and that the organization collects, uses or discloses in connection with the operation of a federal work, undertaking or business. The definition of commercial activity given in 2(1) that commercial activity Ameans any particular transaction, act or conduct or any regular course of conduct that is of a commercial character@ is circular and does nothing to clarify uncertainties concerning the Bill’s scope. There are two points to be made here as concerns the application of this Bill to health information. The first concerns clarity around where commercial ends and health care begins. Which health care settings that operate for profit are excluded from the Act? This question speaks to the difficulty of delineating what activity is considered health care and what activity is considered commercial. Moreover the increase in public/private partnerships and joint funding of endeavours within the health care sector, which the government appears to be promoting, may make it increasingly difficult to make this distinction; for example in the area of research. The second concerns the specification of different regimes for information protection and privacy rights, depending on whether the information is deemed to come under commercial activity. This is clearly not desirable. However, the solution to this problem is not to reduce the privacy rules for all health information to the lowest common denominator but to raise them to a higher level of protection than is afforded commercially acquired information. Subjecting all health information to the regime laid out in the CMA Health Information Privacy Code would achieve this objective. In preparing this brief CMA has assumed that the Bill will provide a scheme that applies to at least some health information. Three years after it is in force it will apply equally to activities that occur strictly within the provinces, unless there is legislation in the province that is substantially similar to the Bill (see sections 27(2)(b) and 30). No doubt the extent of the federal government’s ability to legislate in this area generally will be the subject of extensive debate. However, CMA has no comment on this debate and provides its opinion in the interests of ensuring that the rules that relate to health information are compatible with preserving the integrity of the patient physician relationship and the protection of patient privacy and health information confidentiality. The federal government has an opportunity to provide Canadians with strong privacy rights in health information. It is incumbent upon the government to do so. C. Scope - Government Excluded Bill C-6 expressly excludes a large part of government activity from its ambit. Although government activity is to some extent governed by the Privacy Act, R.S.C. 1985, P-21, the rules of this Act provide less protection than those of Bill C-6. Government should subject itself to at least the same rules that it requires of the private sector in so far as it is a collector and user of information. Indeed, government’s practices relating to the collection, storage, merging, transfer and use of health information should be subject to more stringent rules than those found in either the Privacy Act or Bill C-6. The Advisory Council Report also calls for the same rules to apply to the public and private sectors, rules that are more stringent than those found in the Privacy Act or Bill C-6. Therefore, CMA recommends: That, at least in connection with health information, the provisions of the Bill apply equally to the public and the private sectors. III. Considerations Regarding Patient Privacy and Confidentiality: Medical Context Versus Commercial Context A. CMA’s Position The world of health care is very different from that of commerce and consequently requires distinct rules that are more protective of privacy. Confiding information to your physician under the trust of the patient-physician relationship is not on par with giving your address to a salesclerk when you purchase a toaster or rent a movie. Health information is special by nature. Canadians know this. In a recent Angus Reid poll commissioned by CMA Canadians told us loudly and clearly that they regard their health information as especially sensitive. However, the obvious sensitivity of health information is not the only thing that makes it special and in virtue of which it warrants distinct rules to strengthen privacy protection. It is important to recognize that this information is typically collected under the trust patients vest in their physicians. Patients confide their information for the purpose of receiving care and in the expectation that it will be held in the strictest confidence. This purpose, and the preservation of this trust, should be given primacy in rules concerning health information It is also important to recognize that the trust under which patients confide in their physicians is fundamental to the patient-physician relationship. If patients could not trust their physicians to protect their information and keep it secret they would not confide it as freely as they do. In consequence, the ability of physicians to provide the care needed would be severely diminished. Rules relating to health information must be developed in recognition of its special nature and the circumstances of trust and vulnerability in which it is initially collected or confided. Patients confide in their physicians for the purpose of receiving care. The potential that the information thus confided may subsequently be used for other purposes must not impede the therapeutic purpose or diminish the trust and integrity of the patient-physician relationship. In recent years the secondary use of information for purposes other than those for which it was collected has been increasing without adequate oversight or public knowledge. This ‘function creep’ undermines the trust of patient-physician relationship. Collection and use beyond the therapeutic context and for purposes unrelated to the provision of direct care should be subjected to rigorous scrutiny before they are permitted to occur. To the extent that they are permitted to occur without patient consent they should be explicitly authorized in legislation to ensure transparency and adequate oversight. Putting patients first means ensuring that health information, in all but exceptional and justifiable circumstances, is used only under the strict control of the patient. The patient must be able to exercise control through voluntary, informed consent. Moreover, a distinction must be made between a patient’s right to know what can or must happen to health information and the right to consent to such use. Bill C-6 permits the collection, use and disclosure of information without knowledge or consent on grounds such as expediency, practicality, public good, research, offence investigation, historic importance and artistic purpose. The laxness and breadth of these exemptions as applied to health information is unacceptable. These uses, without the patient’s consent (or even knowledge), reduce the patient to a means to someone else’s end, however worthwhile that end may be. Moreover, the absence of consent (or even knowledge) undermines the integrity of the patient-physician relationship and has the potential to erode the trust patients have in their physicians - a trust that is essential to patients’ willingness to provide the complete information needed to provide them with care. CMA has developed and adopted a Health Information Privacy Code (Appendix A) in recognition of the special nature of health information and to give primacy to patients and to the right of privacy. In commenting on this Code the Advisory Council Report notes: The Code represents an important contribution to the deliberations of Canadians and legislators on how to safeguard privacy across the health domain. In his 1998-99 Annual Report, the Federal Privacy Commissioner writes in support of the Health Information Privacy Code: Legislators looking for guidance on health information privacy law need not re-invent the wheel; the Canadian Medical Association’s Health Information Privacy Code is a comprehensive benchmark for achieving a high national level of protection for personal information. The Code could be the basis for drafting legislation. Given the grumblings that the Code sets the bar too high, perhaps some Health Infoway funds should be used to study the impact of its implementation. The patients at the heart of this system deserve no less. There are several key principles that guided the development of the Health Information Privacy Code and upon which it is based: 1. The provision of health care to all Canadians irrespective of social circumstances or health status is a highly regarded value in Canadian society. The system is publicly funded and universally accessible. 2. The right of privacy is fundamental to a free and democratic society. 3. Rules relating to health information must recognize its special nature. Health information has a high level of sensitivity and is confided or collected in circumstances of vulnerability and trust for the primary purpose of benefiting the patient. 4. The hallmark of the medical profession since the time of Hippocrates has been the willingness and ability to hold information confided secret. 5. The patient-physician relationship is one of trust. A central feature of this trust is the belief of patients that information confided in or collected by physicians and other health care providers will be kept secret. 6. Patients believe that the information they disclose or that is gathered as a result of their seeking health care will be used to provide them with health care. Use beyond the provision of health care without knowledge or consent goes beyond what a patient’s reasonable expectations were when information was confided or collected and therefore is a breach of the trust patients place in their physicians. 7. Except in very limited circumstances, consent is required for health information collection, use, disclosure or access for any purpose. 8. Information required to provide patients with the health care sought should be readily available to those who require it to provide an aspect of care as consistent with the wishes of the patient. 9. Uses of health information for purposes other than the provision of health care to the person seeking care should be subject to rules that: - protect and promote privacy and confidentiality; - generally require express consent; - can be justified according to specific criteria. 10. Patients should know the uses to which their health information may be put prior to disclosing it. 11. Patients may be reluctant to disclose information if they are concerned about the uses to which the information is put or the persons entitled to access it. B. Public Opinion To determine the public’s views on issues concerning privacy and health information, CMA commissioned Angus Reid to conduct research in two forms, quantitative (survey) and qualitative (focus groups), and has found the following: 1. Canadians believe that health information is the most sensitive type of information, and indeed more sensitive than their financial information. 1. 2. Canadians believe that their health information will be kept confidential and consider this to be important. 3. Canadians believe it important to know and control how their health information is shared with others. 4. Canadians do not want their health information released to third parties (including governments and researchers) without their knowledge and consent. 5. Canadians have concerns about the release of delinked or anonymous information to third parties without their consent. 6. Some Canadians are reluctant to confide information to their physicians due to concerns about it subsequently being disclosed to others without their consent. 7. Patients believe that privacy rules should apply equally to the public and the private sector. These findings are consistent with the published literature and other findings relating to the public’s concerns about privacy and confidentiality. The CMA Health Information Privacy Code was developed in consideration of these views. Once developed, its principles were subsequently tested with the public in a series of cross-country focus groups and it was found that the Code appears to enjoy considerable public support. C. The Advisory Council Report The Advisory Council Report relates to the electronic health record. However, given the direction towards the greater use of technology and the underlying principles informing the Advisory Council, its recommendations are generalizable to all health information. A key principle of the Advisory Council Report is that access by health care professionals should be based on a need-to-know basis under the strict control of the patient. The Council, like CMA, calls for scrutiny and justification of secondary uses of health information. The Council is opposed to the use of multipurpose identifiers on the grounds that it becomes too easy for government officials from one department to gain access to a person’s health record or to combine a number of records to assemble a comprehensive profile. (Anecdotal evidence suggests that this concern may be justified and that there are insufficient safeguards preventing the flow of health information among government departments.) The Council recommends that all governments ensure that they have legislation to address privacy protection specifically aimed at protecting personal health information through explicit and transparent mechanisms. Included in these mechanisms are: * The provision of a precise definition of free and informed consent, as well as a statement of principle that informed consent should be the basis for sharing personal health information; * Any exemption to the requirement of informed consent should be clearly set out in law. More specifically, legislative guidance should be provided on how to balance the right of privacy with the public good for research purposes to implement a coherent and harmonized pan-Canadian system for independent, ethical review. * There should be provisions regulating secondary uses of non-identifiable health information. These provisions should address privacy concerns surrounding the degree to which data might be linked back to an identifiable individual. * Legislation should set clear limits on access to and use of health information by third parties outside the health care system. To prevent the serious invasions of privacy that can result from the unrestricted linking of personal health information with other kinds of information on the same individual, the legislation should contain provisions prohibiting the use for any other purpose of unique personal identifiers in health information systems. D. The Approach in Bill C-6 Bill C-6 begins with the right premise: that “rules to govern information collection, use and disclosure” should recognize the “right of privacy”. However, it fails to recognize the special nature of health information and to tailor its provisions accordingly. In consequence, there is confusion and uncertainty about Bill C-6's application to health care. Even more seriously, however, Bill C-6 fails to recognize that health information requires stronger or greater privacy protection than other types of information. The Bill makes a cursory attempt at distinguishing among varying types of personal information and gives inadequate additional protection to information that is highly sensitive (such as health information), notwithstanding the provisions in Paragraph 4.3.4 of Schedule 1 concerning consent which do provide some latitude for more stringent requirements in the case of sensitive information. The Bill permits the collection, use and disclosure of information without knowledge or consent on grounds such as expediency, practicality, public good, research, offence investigation, historic importance and artistic purposes. In the context of health information, these grounds should be subject to intense scrutiny to determine their relevance and legitimacy. Some of these grounds would not withstand scrutiny if subjected to the tests established in the CMA’s Health Information Privacy Code. E. Conclusion CMA believes that health information is special and deserves a higher level of privacy protection than other types of information. The Advisory Council Report also recognizes that distinct rules, more protective of privacy, are required for health information. The Council’s Report places strong emphasis on the protection of privacy, recognizes that, as a general rule, the flow of health information should be on a need-to-know basis and under the control of the patient through the exercise of free and informed consent, and requires limits on the secondary use of health information. The inadequacy of Bill C-6 for health care is not surprising because clearly it was not drafted with health information in mind. Rather, it is written from the perspective of encouraging commerce. It appears to have access to information as its dominant value. However, the world of health care is very different from that of commerce and distinct rules that are more protective of privacy. The CMA Health Information Privacy Code begins from the same starting point as Bill C-6, the Canadian Standards Association (CSA) Code which the Bill includes as Schedule 1. However, unlike Bill C-6, the CMA Code tailors the CSA Code to the specific circumstances of health information. The CMA Health Information Privacy Code, therefore, is able to address issues specific to health information that Bill C-6 either fails to address or, even worse, creates. It offers a template for the protection that should be specifically accorded to the right of privacy in health information, a template that appears to have considerable public support and is designed to uphold patient confidence in their physicians and the health care system. Amending Bill C-6 to incorporate the principles in the CMA Code would ensure adequate privacy protection. CMA recommends: That Bill C-6 be amended to incorporate specific provisions relating to health information and that the provisions of the CMA Health Information Privacy Code provide the basis of such provisions. CMA developed the Health Information Privacy Code in recognition of trends and developments that pose new threats to patient privacy and the trust of the therapeutic relationship. In recent years the secondary use of information for purposes other than the purposes for which it was collected has been increasing without adequate oversight or public knowledge. This ‘function creep’ undermines the trust of patient-physician relationship. Collection and use beyond the therapeutic context and for purposes unrelated to the provision of direct care should be subjected to rigorous scrutiny before they are permitted to occur. To the extent that they are permitted to occur without patient consent they should be explicitly authorized in legislation to ensure transparency and adequate oversight. CMA’s Health Information Privacy Code provides a test to which legislation addressing health information should be subjected. This test (found in section 3.6 of the CMA Code) states: Any proposed or existing legislation or regulation made under legislative authority that permits or requires health information collection, use, disclosure or access shall be subjected to the following legislative test: (a) There must be demonstration that: (i) a patient privacy impact assessment has been conducted, the analysis has been made public and has been duly considered prior to the introduction of legislation [section 3.5 of the Code provides guidance with respect to the patient privacy impact assessment]; (ii) collection, use, disclosure and access will be limited to the greatest degree possible to ensure that * the collection of health information by persons external to the therapeutic context will neither trade on nor compromise the trust of the patient-physician relationship; * patients are not likely to be inhibited from confiding information for primary purposes; * the ability of physicians to discharge their fiduciary duties to patients will not be compromised; and, * patient vulnerability will not be exploited; (iii) collection, use, disclosure and access will be restricted to what is necessary for the identified purpose(s) and will not impede the confiding or collection of information for primary purposes; (iv) provisions exist for ensuring that patients are provided with knowledge about the purpose(s) and that, subject to 3.6(b), patient consent is clearly voluntary; (v) the means used are proportionate and the collection will be limited to purposes consented to or made known to the patient; (vi) the patient’s privacy will be intruded upon to the most limited degree possible in light of the purpose(s) consented to or made known to the patient; (vii) linkage of the health information will be limited; and (viii) unless clear and compelling reasons exist: * all reasonable steps will be taken to make health information anonymous; and * if it has been demonstrated that making health information anonymous would render it inadequate for legitimate uses, the information will be collected and stored in a deidentified-relinkable format. (b) When nonconsensual collection, use, disclosure or access is permitted or required by legislation or regulation that meets the requirements of the Code, the following conditions must also be met: (i) the right of privacy has to be violated because the purpose(s) could not be met adequately if patient consent is required; and (ii) the importance of the purpose(s) must be demonstrated to justify the infringement of the patient’s right of privacy in a free and democratic society. (c) Any legislative provision or regulation that permits or requires health information collection, use, disclosure or access nonconsensually shall not, without compelling reasons, be applied retroactively to existing health information. In its current form, Bill C-6 would not pass the scrutiny of the test. Consequently, CMA recommends: That the proposed rules for health legislation be subject to the legislative test found in CMA’s Health Information Privacy Code and formulated in light of this process. IV. Specific Comments on Bill C-6 From the Perspective of CMA’s Health Information Privacy Code This section highlights some key distinctions between the approach taken by Bill C-6 and CMA’s Health Information Privacy Code. It uses examples to illustrate divergent approaches taken for the purpose of demonstrating that Bill C-6 is inadequate in the protection it accords health information and to show how the CMA Health Information Privacy Code would address the issues adequately. A. General Bill C-6 and CMA’s Health Information Privacy Code are based on the Canadian Standards Association’s Model Code for the Protection of Personal Information (CSA Code). Bill C-6 and the CMA Code also augment the CSA Code’s provisions where considered necessary. The need to extend the provisions of the CSA Code demonstrates that the CSA Code, being general in nature, provides inadequate protection to information in many instances. The CSA recognized this at the time it developed its Code and specifically issued additional, specific guidance for health information in the form of an appendix to the Workbook for applying the Code. The Workbook begins: Information regarding one’s health and health records may be among the most sensitive of all personal data. Individuals are concerned that inappropriate disclosure of such information could unduly affect their employment status or their lives in general. . . Some health information is obtained directly from health care providers who have been given a patient’s private information with the expectation that this information will remain as a private communication. Health care providers . . . in turn, feel that such concerns could influence individuals to withhold vital information or avoid treatment to ensure their private information remains as such. Implementation of privacy procedures that adhere to the principles in the CSA Code and rigid applications of such procedures are essential steps for organizations that require access to health information, to maintain an individual’s trust that sensitive personal information remains confidential. In designing and implementing such procedures, organizations should recognize the sensitive nature of such information and also the fact that the primary reason that health care providers maintain records is to ensure that safe and efficacious care is provided. The Workbook goes on to list 7 interpretative points to augment the CSA Code, providing additional privacy protection as it applies to health information, including the following: requirements for the individual’s knowledge and consent be rigidly followed. Consent to acquire and disclose health information should be undertaken with the individual’s full knowledge of the scope of information to be requested. Bill C-6 does not include these additional interpretive points. It does not give due recognition that health information, because of its high sensitivity, deserves even stronger protection than is provided in the CSA Code as appended in Schedule 1 of the Bill (which even the Committee that drafted the CSA Code recognized). Although Bill C-6 and the CMA Code are based on the CSA Code, each takes a different approach to the ultimate protection accorded information and to the right of privacy. This divergence demonstrates that there are many ways to resolve issues left unresolved by the CSA Code. In other words, it is not a foregone conclusion that basing provisions on the CSA Code will result in appropriate or adequate protection of information. Rather, resolution of issues requires thought and deliberation and will depend in some measure on the primacy given to certain values. Bill C-6 appears to have given access primacy in the pursuit of commerce, whereas CMA gives privacy protection primacy in the pursuit of the provision of health care in accordance with physicians’ fiduciary obligations to patients and the integrity of the patient-physician relationship. CMA did not develop its approach in a vacuum. It reviewed, and was inspired by, the report of the House of Commons Standing Committee on Human Rights and the Status of Persons with Disabilities, entitled Privacy: Where Do We Draw the Line? This report articulates and makes explicit many of the issues that should be informing the current debate on Bill C-6. In addition, the Report of the Advisory Council takes a very different approach than Bill C-6. The Report recognizes the need to pay more than lip service to protecting privacy and confidentiality and recommends specific measures aimed at doing this. B. Primacy of the Therapeutic Purpose The root of most of the problems in applying Bill C-6 to health care is its failure to distinguish among purposes for the collection, use and disclosure of health information. In particular, the Bill fails to distinguish between the primary purpose, which is to deliver care to and for the benefit of an individual patient, and secondary purposes, which are not for the direct benefit of the patient and indeed may even involve using the patient’s information to his or her detriment. Under Bill C-6, the same rules apply equally to both the primary and to secondary purposes. In other sectors this failure to distinguish different purposes and to fashion rules in light of salient differences may not pose problems. In the health care sector, however, the consequences could be quite serious. As applied to secondary purposes, the provisions in Bill C-6 fail to limit access appropriately. Access to information may occur in ways that are inappropriate and violate the privacy of patients. As applied to the primary purpose -- the use of a person`s information to provide that person with care -- the rules in the Bill, if rigidly construed, may inhibit access that would otherwise be appropriate and consistent with the patient`s right of privacy. For example, the consent provisions in the Bill could create impediments to information flow where various members of a ‘health care team’ require information about the patient in order to be effective for the patient’s benefit; the provisions in the Bill that seek to limit the extent of information collection could inhibit physicians from being as extensive as they sometimes are and should be in collecting information from patients for the purpose of providing care; the provisions in the Bill requiring that the patient`s request to review his or her record be in writing could in fact be a barrier to patient access which might otherwise be facilitated informally and consistently with the patient`s wishes by a simple verbal request. Such consequences no doubt would be unintended by the drafters of the Bill; the drafters might even argue that for someone to interpret the provisions mentioned above as potentially leading to these consequences would be to misinterpret them. Regardless, the fact is that the Bill, on these matters and others, is somewhat strained when its provisions are applied to health care. The CMA Health Information Privacy Code, however, is not. It begins from the same starting point as Bill C-6, which is the CSA Code. However, the CMA, recognizing (as the drafters of the CSA Code apparently also did) that the CSA Code would need to be tailored to deal adequately with health information, did so in drafting its Health Information Privacy Code. This document was written from the ground up not just with privacy first and foremost as a value but also with specific reference to the health sector. And it is based on the fundamental premise that not all purposes for the use of health care are equal and that the therapeutic purpose must be given primacy. Thus the CMA Health Information Privacy Code avoids the kind of problems identified above that might arise as Bill C-6 is applied to health information. For example, it specifies that the collection of health information for the primary purpose of providing care “may be as extensive as necessary to fulfil these purposes and reflect the high level of trustworthiness and accountability of health professionals in the therapeutic context” (3.2) but that for any secondary purposes it should be “as minimal as necessary in recognition of the need to protect the patient’s right of privacy in the therapeutic context” (3.3.). As concerns consent, which CMA recognizes to be core to the protection of privacy, the CMA Code articulates rules for consent in recognition of the importance of timely information flow in the team context and as appropriate to meet the purpose for which the patient has confided the information in the first place, which is to receive care. It stipulates that consent for the primary purpose may therefore be implied, albeit with certain qualifications. Moreover, where consent is required, the provisions of the Code allow that “the conveyance of generic information is a reasonable means of providing knowledge” in most circumstances, which means that this requirement is unlikely to create unreasonable burdens that would diminish rather than strengthen the therapeutic relationship. Finally, the CMA Code limits itself to issues of principle concerning patient access to their records; Bill C-6, by specifying that requests must be in writing, could in fact be creating a barrier to patient access or an undue burden upon the patient-physician relationship as there may be instances when an informal request would be quite appropriate. C. Knowledge of Purpose Prior to Collection Bill C-6 Bill C-6 is ambiguous in its provisions relating to whether or not a person should know the purposes for which information will be used prior to disclosure. This is due in part to the use of the term “knowledge and consent” as one concept rather than distinguishing the knowledge requirement from the consent requirement. What a person should know in relation to the purposes for which information might be used or disclosed, prior to its being given, is distinct conceptually from whether the person must consent before information can be used or disclosed for a particular purpose. Schedule 1 of the Bill contains a number of principles. For the purposes of this Brief the schedule will be referred to in terms of the principles (and their subparagraphs). Principle 2 addresses the identification of purposes for which information will be used or disclosed. Provided a purpose is identified it becomes a legitimate purpose (this Brief recognizes that the addition of the “reasonable person” clause in 5(3) takes precedence and provides some grounds for distinguishing legitimate and illegitimate purposes). Subparagraph 3 states that the identified purposes should be specified at or before the time of collection. Section 5(2) of the Bill states that the use of ‘should’ in schedule 1 indicates a recommendation and does not impose an obligation. Therefore, according to subparagraph 3, it is recommended but is not obligatory that disclosure occur. On the other hand, principle 3 addresses consent and appears to impose an obligation by stating that the knowledge and consent of the individual are required for the collection, use, or disclosure of personal information, except where inappropriate. Similarly subparagraph 2 appears to create something of an obligation by stating, “organizations shall make a reasonable effort to ensure that the individual is advised of the purposes for which the information will be used.” Section 7(1)(a) permits the collection of information without knowledge and consent when collection is clearly in the interests of the individual and consent cannot be obtained. The intent of this section could be made clearer, particularly in terms of who determines the “interests of the individual.” Otherwise this exception could give undesirable licence to collect without knowledge or consent. The provision in section 7(1)(b) is more problematic. This section appears to favour withholding knowledge from an individual if such knowledge would compromise accuracy, defeat the purpose for collection or prejudice the use. In some instances it may well be that, if an individual is provided with knowledge of the purposes for which information is collected and the uses to which it will be put, he or she may choose to withhold information rather than disclose it, and in doing so would clearly compromise accuracy, defeat the purpose for collection or prejudice the use to which the information will be put. This is contrary to principle 4.4.2, which recognizes that information should not be collected by misleading or deceiving individuals. The intent of this section should be far clearer and circumscribed in such a way as to make it clear that it is not permissible to withhold knowledge or not seek consent simply on the basis that if a person had knowledge they would not wish to disclose information. Section 7(1)(c) allows collection without knowledge or consent for journalistic, artistic or literary purposes. This provision is totally inappropriate in the case of health information. CMA Health Information Privacy Code The CMA Health Information Privacy Code is considerably more restrictive that Bill C-6. It recognizes that, in the therapeutic context, health information is confided or collected under the patient’s presumption that it is necessary to meet his or her therapeutic needs. The potential that health information may be subsequently collected, used, disclosed or accessed for other purposes without patient consent should be made known to patients before information is confided or collected for the primary therapeutic purpose. Moreover, it is not acceptable to withhold knowledge from patients deliberately out of concern that knowledge could inhibit them from confiding important information fully and truthfully. The CMA Health Information Privacy Code limits the nonconsensual collection of health information to circumstances where it is either permitted or required by legislation or ordered or decided by a court of law. In addition, the CMA Code gives explicit direction to legislators with respect to the conditions under which legislation should permit or require health information collection (see section 3.6 of CMA Code). In the case of nonconsensual collection, the following conditions are stipulated: 1. The right of privacy has to be violated because the purposes could not be met adequately if patient consent is required; and 2. The importance of the purposes must be demonstrated to justify the infringement of the patient’s right of privacy in a free and democratic society. D. Use Without Knowledge Or Consent Bill C-6 Once information has been collected and despite the limits, inadequate though they be, placed on collection without knowledge or consent, it can be put to even greater use than for the purposes for which it has been collected (with or without knowledge or consent). Section 7(2) opens up dramatically the uses to which collected information may be put without either knowledge or consent. At a minimum, and with little additional administrative effort, the enumerated grounds of section 7(2) (and 7(3) should be made known to an individual prior to their disclosure of information, which would be in keeping with the principle of openness and explicitness. Section 7(2)(a) allows use in connection with the investigation of an offence. In the medical context this could be problematic, particularly if it is interpreted to impose an obligation. Generally, there is no obligation to assist in the investigation of an offence, and indeed the fiduciary duty between patient and physician and the duty of confidentiality owed to the patient by the physician would suggest that physicians not offer information, despite its usefulness. Section 7(2)(b) recognizes emergency situations. However, as worded, section 7(2)(b) would allow access to anyone’s information if it is for the purpose of acting in an emergency threatening the life, health or security of an individual. The implications of this section should be carefully thought through. It is not desirable to give such a broad licence to access anyone’s information on the basis of an emergency. There should be some limiting principle that takes into account the prevailing view that people generally are not required to go to the assistance of others (emergency or otherwise) and that information about oneself is considered worthy of protection against use or disclosure, despite its potential benefit to others (for example, genetic information or HIV or Hepatitis C status). Section 7(2)(c) is very problematic as it permits the use of “identifiable” information for a host of purposes, including statistical and research, when it is impractical to seek consent. Even though the Commissioner must be informed of the use before the information is used the Commissioner has no power to approve or reject the use. If the use is legitimate under the Bill there would be no grounds open to the Commissioner to cause an audit to occur. This section gives significant scope for the secondary use of information that has been collected without knowledge or consent; in the case of health information it is very problematic. CMA Health Information Privacy Code The CMA Code makes a clear distinction between the primary purpose for the collection and use of health information and secondary purposes for its use. The key distinction between these two categories is that primary purposes relates to the provision of the health care benefit sought whereas secondary purposes are ends or aims that are not directly related to the provision of care. The CMA Code divides secondary purposes into two categories: 1. Secondary legislated purposes are those purposes that have been subjected to the legislative test specified in the Code and have subsequently been written into law; 2. Secondary nonlegislated purposes are any other purposes, such as education or research not governed by legislation, that meet the provisions of the CMA Code and the secondary nonlegislative test provided by the Code. The tests that the CMA Code requires of both relate to: 1. Impact on privacy. 2. Impact on the patient-physician relationship, especially confidentiality and trust. 3. Impact on the willingness of patients to disclose information. 4. Impact on patients’ ability to receive care. 5. Evidence of broad public support for the measure. 6. The use will not exploit or compromise the trust of the patient-physician relationship. 7. Patient vulnerability will not be exploited. 8. Under most circumstances patients will be fully informed of the purpose and patient consent will be clearly voluntary. 9. Patient privacy will be intruded upon to the most limited degree possible. 10. Linkage of health information will be restricted and consented to by patients. In other words, the CMA Code does not permit any and all secondary purposes for the use of health information. Rather, it requires justification for the secondary use and assurance that the secondary use will neither impede nor undermine the patient-physician relationship and the provision of health care to the patient. This test is much more privacy protective than the “reasonable person” test the Bill contains in Section 5(3). Moreover, the CMA Code only permits use without consent if it is permitted or required by legislation or when ordered or decided by a court of law. The Advisory Council Report Like the CMA, the Advisory Council Report makes distinctions among various types of uses. The Report calls for legislation to clearly prohibit all secondary commercial use of personal health information (in which respect the Advisory Council takes an even stronger position than the CMA). In addition, the Report recommends that there be provisions regulating secondary uses of non-identifiable health information and that such provisions should address privacy concerns surrounding the degree to which such data might be linked back to an identifiable individual. In this context, the Report recommends that legislation set clear limits on access to and use of health information by third parties outside the health care system. In addition the Report reviews the uses of health information for statistical and research purposes. In connection with research, the Report calls for a number of safeguards and restrictions: 1. Where the data sets used have a higher level of potential identifiability, “the general rule should be informed consent and stringent assurances about privacy protection and security arrangements are necessary before a researcher can have access to personally identifiable information.” 2. The Report recognizes that in some instances it may be impractical to obtain consent from patients. Whether in anonymous or identifiable form, the Report requires that notice be given about the use of the information. In the case of the use of identifiable information, the Report states that the research should be subject to independent ethics review with the onus on the person seeking to use the information without consent to demonstrate that: (a) a tangible public good of significant benefit will result; (b) consent is impossible to secure at a reasonable cost; (c) less identifiable data will not serve the same purpose; and (d) no harm can occur to any person directly or indirectly as a result of this use of his or her personal information. E. Disclosure Without Knowledge Or Consent Bill C-6 The comments found under C. and D. above apply equally here. Section 7(3) adds further instances when collected information can be disclosed to others without knowledge or consent. CMA Health Information Privacy Code In the case of secondary use of health information, the CMA Code takes a far more restrictive approach. As concerns use, disclosure or access, it states: The potential that health information, in whole or in part, may be subsequently collected, used, disclosed or accessed for other purposes without their consent, and what those purposes might be, must be made known to the patient by reasonable means before it is confided or collected for primary purposes. Moreover, the CMA Code recognizes that information disclosed by one organization is collected by another. The Code defines collection to mean: the act of accessing, receiving, compiling, gathering, acquiring or obtaining health information from any source, including third parties, and by any means. It includes information collected from the patient, as well as secondary collection of this information in whole or in part by another provider or user. The collecting organization should be bound by the provisions of the CMA Code, which generally requires consent for use for any purpose and always requires knowledge of the potential purposes that information will or must be put to prior to the information being disclosed. CMA’s Code states: Health information custodians must ensure that third parties privy to health information have adopted this Code or are bound by equivalent provisions. Finally, the CMA Code explicitly recognizes that information can be retrieved from a variety of sources to formulate records. Any and all such practices and the composite form developed are given the same degree of protection as that accorded information collected directly from the patient. F. Consent Bill C-6 In those cases where consent for collection, use or disclosure are required, the provisions in Bill C-6 are inadequate as applied to health care. Schedule 1 distinguishes between express and implied consent. Express consent is not adequately defined and it appears that this is not equivalent to what in health care is called ‘informed consent’. For example, Principle 4.3.2. says that “organizations shall make a reasonable effort to ensure that the individual is advised of the purposes for which the information will be used”. In the health care context, the notion of ‘reasonableness’ with respect to the doctrine of informed consent applies not to the effort to advise or inform (that much is assumed or given) but rather to determinations regarding what information should be provided to the patient. In addition, the application of some of the means described in Principle 4.3.7 by which individuals can give consent, and in particular the ‘negative option’ checkoff box in (b), may be quite problematic in the health care context. The broad scope allowed to implied consent in the Bill is also worrisome as applied to the health care setting. Principle 4.3.6 says “implied consent would generally be appropriate when the information is less sensitive”. However, with implied consent the issue is not the sensitivity of the information but rather the wishes of the patient. It is appropriate to infer consent even when the information is very sensitive provided one has reason to believe this is grounded in the patients wishes; conversely, it is not appropriate to infer consent, even in the case of information deemed not to be sensitive, if there is reason to believe the patient would object if asked explicitly. CMA Health Information Privacy Code The CMA Code furnishes clear definitions for consent: “Consent” means a patient’s informed and voluntary agreement to confide or permit access to or the collection, use or disclosure of his or her health information for specific purposes. For purposes other than the provision of direct care, which is the purpose for which the patient presents in the first place, the consent must always be explicit or express since there is no logical connection between secondary purposes and the desire to achieve care. Therefore inferences cannot be made with any confidence. The Code defines express consent as follows: “Express consent” is given explicitly, either orally or in writing. Express consent is unequivocal and does not require any inference on the part of the provider seeking consent. The CMA Code defines implied consent to disallow the loose use of the term, which is increasing today, to justify access for purposes (secondary purposes in particular) that the patient may not wish to occur: Implied consent arises where agreement may reasonably be inferred from the action or inaction of the individual and there is good reason to believe that the patient has knowledge relevant to this agreement and would give express consent were it sought. The CMA Code also lays out clear rules for the use of the concept of consent and makes clear that consent can be inferred for primary purposes (i.e., the provision of health care to the patient) but not for secondary ones, which require express consent. The Code grounds the notion of implied consent not in the desire to subvert express consent and thereby gain access to information that might otherwise be denied but rather in the wishes of the patient and the importance of providing health care for therapeutic purposes as consistent with those wishes. Advisory Council Report In addition to being more stringent than Bill C-6 about exemptions to consent, the Advisory Council Report also gives greater importance to defining the term clearly and strictly. It says that any legislation concerning health information should: contain a precise definition of free and informed consent, as well as a statement of principle that informed consent should be the basis for sharing personal health information. Although not as precise and emphatic on the subject of consent as is the CMA Health Information Privacy Code, the Report is certainly more so than is Bill C-6. G. Information Flow Within Organizations Bill C-6 Bill C-54 defined use to include “the transfer of personal information within an organization.” Bill C-6 no longer defines use, which leaves it uncertain whether the definition of use quoted above from Bill C-54 would be a reasonable interpretation of Bill C-6. If so, this would create a problem. Interpreting use in this way could have the effect of inappropriately restricting the free flow of information within an organization. In the health care context this is not a reasonable or desirable outcome and would hinder, rather than promotes, the patient’s right of privacy. CMA Code The CMA Code recognizes that the free flow of health information is desirable to the extent that it furthers the provision of the health care benefit sought and that it occurs with patient consent. The Code defines the primary purpose to mean: (i) Primary therapeutic purpose is the initial reason for a patient seeking or receiving care in the therapeutic context, and pertains to the delivery of health care to a particular patient with respect to the presenting health need or problem. It encompasses consultation with and referral to other providers on a need-to-know basis. (ii) Primary longitudinal purpose concerns developing composite health information about a particular patient, such as a detailed medical history, beyond direct application to the presenting health need or problem, in order to enhance ongoing care to that person. The Code goes on to state that: Health information collection, use, disclosure or access for the primary therapeutic and longitudinal purposes may be as extensive as necessary to fulfil these purposes and reflect the high level of trustworthiness and accountability of health professionals in the therapeutic context. And further states that: Security safeguards shall impede as little as possible health information collection, use, access and disclosure for primary purposes. Finally, in addressing consent the Code states: Consent to health information collection, use, disclosure and access for the primary therapeutic purpose may be inferred. Consent to subsequent collection, use, disclosure and access on a need-to-know basis by or to other physicians or health providers for this purpose, and for this purpose alone, may be inferred, as long as there is no evidence that the patient would not give express consent to share the information. The principles in the CMA Code that give effect to the patient’s right to control what happens to his or her information are not incompatible with the free flow of information among members of a health team for the purpose of providing care to the patient. Indeed, they facilitate and enable this flow to the extent this is in keeping with the patient’s wishes. H. Information Protected Bill C-6 The Bill covers “personal information” which is defined to mean “information about an identifiable individual, but does not include the name, title or business address or telephone number of an employee of an oganization.” This definition raises a host of questions: 1. Does the Bill cover information that has been delinked to an identifiable individual but that could be relinked to identify them? 2. Does the Bill only exclude anonymous information - that is, information that could never be relinked to an identifiable individual? And if so, is there an unjustified assumption that information can, in all cases, be rendered truly anonymous? 3. In the case of delinked and anonymous information, who decides that information about an identifiable individual can be rendered delinked or anonymous? The holder of the information or the person to whom the information pertains? 4. Is it accurate or reasonable to assume that people have no interest in information emanating from them once it has been rendered delinked or anonymous? 5. Given that anonymous information is generated from personal information, is the act or process rendering personal information into anonymous form considered a use under the terms of the Bill, and if so does this use require consent? In considering these questions, it is important to keep in mind that the concept of “anonymity” means different things to different people. Moreover, there are no generally used or accepted standards that address what is required to render identifiable information truly anonymous. As a consequence, different people use different standards (of varying degrees of rigour), if they use a standard at all. It is also important to note that, in virtue of sophisticated techniques for identifying individuals from supposedly anonymous information, there is debate about the extent to which true anonymity can ever be achieved or guaranteed. CMA Health Information Privacy Code In light of issues concerning the definition of ‘personal information’ and in the interest of ensuring a thorough scrutiny of information practices, the CMA Code provides a broad definition of health information: Health information means any information about a patient that is confided or collected in the therapeutic context, including information created or generated from this information and information that is not directly or indirectly linked to the provision of health care. It includes all information formats. The CMA Code covers identifiable information, delinked information, anonymous information and any composite form that is produced when health information is linked to other information about the patient. CMA’s research indicates that patients have an interest in their information even when it is in delinked and in anonymous formats. This view has recently received support from a decision of the High Court of Justice in England that is particularly relevant in the context of the commercial use of health information (Source Informatics Ltd. v. Department of Health). The issue arose because a prescription database company sought judicial review of a Department of Health policy document that advised National Health Service GPs and pharmacists not to sell “anonymous” prescribing or dispensing information. The document contained the following analysis: Anonymisation (with or without aggregation) does not, in our view, remove the duty of confidence towards the patients who are the subject of the data. Apart from the risk of identification of a patient despite anonymisation, the patient would not have entrusted the information to the GP or the pharmacist for it to be provided to the data company. The patient would not be aware of or have consented to the information being given to the data company, but would have given it to be used in connection with his care and treatment and wider NHS purposes. Anonymisation of the data (with or without aggregation) would not obviate a breach of confidence. . . .The duty of confidence may in some circumstances be outweighed by the public interest in disclosure. However we have severe reservations that disclosure by GPs or NHS pharmacists of dispensing information to X or other data companies would be argued to be in the public interest. Indeed it might well be contrary to the public interest if the data company is further selling the information on doctors prescribing habits to the pharmaceutical industry. High Court Justice Latham upheld the policy document, arguing that the information in question, though anonymous, was nonetheless confidential. He also argued that consent to its release was necessary and could not be implied, and that the breach of confidentiality involved in selling this information could not be justified as being in the public interest: In my view, it is impossible to escape the logic . . . that the proposal involves the unauthorised use by the pharmacist of confidential information. . . . In my judgement what is proposed will result in a clear breach of confidence unless the patient gives consent, which is not part of the proposal at present. Nor is it suggested that the patient can be said to have given implied consent. . . . I recognize that, for some, the sensitivity, as they see would see it, of the information may be such that they would feel that any use of the information without their consent, would be unconscionable. In other words it would be a breach of trust which they were reposing in the pharmacist. . . I have come to the conclusion that . . . this [is] a type of situation . . . in which there is a public interest in ensuring that confidences are kept. It is important that those who require medical assistance should not be inhibited in any way from seeking or obtaining. As I have indicated, I believe that there may be some patients who will feel very strongly that the pharmacist should not give any information obtained from the prescription without their consent. In view of the fact that there is a growing industry in so-called anonymous health information, it is important to ensure that this information is protected as consistent with the duties of health care providers and the expectation patients have that their providers will keep their information confidential. Advisory Council Report The Advisory Council Report addresses this issue in a number of ways. In making recommendations concerning the definition of health information, the Report calls for legislation that embodies: a clear definition of health information, broad enough to incorporate health information collected in public and private systems and to ensure that equal obligations and penalties apply to both public and private sectors. The Report recognizes a spectrum of data formats: completely anonymous, linked to pseudo-identities, code linked and reidentifiable, completely identifiable. In terms of sensitivity, the Report notes that information that can be re-identified is somewhat more sensitive than completely anonymous data or anonymous data linked to pseudo-identities and that completely identifiable health information is the most sensitive type of health information. The Report also notes that there can be some degree of risk of re-identification of what was believed to be anonymous data through such processes as data matching and the results of analysis using small cells. In this light, the Report recommends that legislation should recognize: A definition of personal health information, which takes into account the spectrum of potential identifiability in the case of health information. Furthermore, in the case of secondary uses of health information, the Report notes that provisions regulating secondary uses of non-identifiable health information must form part of any comprehensive legislation. Such provisions should address privacy concerns surrounding the degree to which data might be linked back to an identifiable individual. The Report raises further issues relating to the use of delinked and anonymous data. The Report notes that there may be group interests and concerns regarding data collected and states: Privacy can also be a concern for groups such as Aboriginal and immigrant communities. These communities worry that research on their members could be released to the media without notice and used in a negative way. This emerging issue is growing in importance and, in the Council’s view, should be a serious consideration in the context of ethical reviews of proposed research projects. It is important to note that, in these instances, it is not the fact that data is linked to an identifiable individual that is of concern. Rather, it is the ability to accumulate, process and dissect information that has ramifications for an individual because they are part of a group segregated and identified by the research. Finally, the Report considers the use of person-oriented data (data linked to individuals in a form where personal identifiers have been replaced by a code) for statistical purposes and notes that this too raises concerns about privacy. The Report notes that: “These concerns have traditionally been seen as a tradeoff against data access for research and analysis in the public interest.” The Report restates this to provide a more positive view of privacy and states: the best way for analysts to maintain the public’s consent to use sensitive (but anonymous) health data is to show the public that privacy, confidentiality and security are being taken seriously. In view of the issues concerning the definition of personal information and in the interest of ensuring maximum scrutiny of practices concerning health information and maximum protection of the right of privacy with respect to health information, CMA recommends: That there be a clear definition of the information being accorded a right of privacy and that this definition, at least in the case of health information, include identifiable information, delinked information, anonymous information and any composite information produced when health information is linked to any information about a person from any other source. I. Individual Access Bill C-6 Bill C-6 restricts the right of individual access to personal information. The grounds for denying access to information are inappropriate in the health care context. CMA Code The CMA Code follows the prevailing case law as it relates to medical records. Primarily this gives patients a right of access to their record in all but very limited circumstances. These circumstances are when there is a significant likelihood of a substantial adverse effect on the physical, mental or emotional health of the patient or substantial harm to a third party. The onus lies on the provider to justify denial of access on these grounds. J. Accuracy and Amendment Bill C-6 Bill C-6 requires that information be as accurate, complete and up-to-date as possible and that it shall not be routinely updated unless this is necessary to fulfil the purpose for its collection. In so far as amendment is concerned, Bill C-6 permits amendment to the record in specified circumstances. CMA Code The CMA Code takes a different approach in light of the nature and purpose of health information. The Code recognizes that the recording of statements of fact, clinical judgements and determinations or assessments should reflect as nearly as possible what has been confided by the patient and what has been ascertained, hypothesized or determined to be true using professional judgement. In terms of amending the record in light of a patient’s request, the CMA Code seeks to preserve the original record but also provide for noting the patient’s concerns. To accommodate both requirements the CMA Code states: Patients who have reviewed their information and believe it to be inaccurately recorded or false have the right to suggest amendments and to have their amendments appended to the health information. K. Sensitivity Bill C-6 Schedule 1 recognizes that medical records have a high level of sensitivity attached. For this reason this information may warrant special attention concerning consent, reasonable expectations, individual access and the degree of security that is appropriate. CMA Code The CMA Code recognizes that, even as all health information is sensitive (when considered against other forms of information about individuals), there are also variations in the level of sensitivity in various aspects of the health record. The CMA Code defines the “sensitivity of health information” to refer to: the patient’s interest in keeping the information secret. It varies according to the nature of the information, its form, and the potential negative repercussions of its collection, use or disclosure on the patient’s interests. Under the Code’s consent provisions it is stated that: Although all health information is sensitive and should be treated as such, the more sensitive the health information is likely to be, given what is known about the circumstances or preferences of the patient, the more important it is to ensure that consent is voluntary and informed. With respect to security the Code states: The development of security safeguards with respect to levels of access for various users shall recognize the differences in the sensitivity of health information and permit access accordingly. Moreover, the Code recognizes that health information is special and therefore requires distinct rules that afford stronger privacy protection not just due to its sensitivity but also to the circumstances of vulnerability and trust under which it is initially confided or collected. These special circumstnaces, which include much more than sensitivity, are outlined in Principle 2 of the Code. Bill C-6, by contrast, fails to consider these other features that make health information a special case. In consequence its provisions are not adquately tailored to the special nature of health information and do not accord it the strong privacy protection it warrants. V. Conclusions The increased capacity to collect, store, transfer, merge and access information, coupled with trends that support increased use of and access to information, have the potential to erode our traditional understanding and protection of privacy and confidentiality. The issues are complex and the choices we must make are difficult. Nevertheless, these issues should be squarely on the table and the choices that we make must be clear, transparent and defensible. Of paramount importance is that the public is not mislead into believing that their information is being protected or kept confidential when in fact it is not. Therefore, even to refer to Bill C-6 as the “Personal Information Protection and Electronic Documents Act” should be the subject of debate. Is the Bill truly about information protection or is it actually about permitting access to information? The approach to rules for information in Bill C-6 is directed toward commerce and appears to have access, and not privacy, as its dominant value, notwithstanding the Bill’s reference to a “right of privacy”. In CMA’s view, the Bill’s approach is inadequate when applied to health information. Based on the evidence, it seems highly likely that the public would also find Bill C-6 inadequate. Bill C-6 was not developed with health information in mind. In consequence there is confusion and uncertainty about its application to the health care context. Even more seriously, however, Bill C-6 fails to recognize that privacy with respect to health information requires stronger or greater protection than other types of information. CMA presents a different approach, an approach that recognizes the special nature of health information; an approach that puts patients first and values privacy and the preservation of the trust and integrity of the patient-physician relationship. This approach appears to be well-grounded in the values that Canadians hold about privacy and would likely enjoy broad public support. In addition, the CMA approach draws support from the Federal Advisory Council Report, which like CMA recognizes the importance of preserving patient privacy and the confidentiality of the health record in an era of increased use of technology. Implicitly, the Report recognizes that the benefits of such technology cannot be realized if public support, based on respect for privacy, cannot be secured. The CMA’s Health Information Privacy Code does what Bill C-6 fails to do. Amending Bill C-6 to incorporate the principles in the CMA Code would ensure adequate privacy protection. In light of the clear deficits in Bill C-6 and the inadequate protection of patient privacy and health information confidentiality, CMA urges this Committee to accept its recommendations and the amendment that incorporates them. Nothing less would give Canadians the high level of privacy protection they desire and deserve when it comes to their health information. VI. Summary of Recommendations That Bill C-6 be amended to incorporate specific provisions relating to health information and that the provisions of the CMA Health Information Privacy Code provide the basis of such provisions; and That any proposed rules for health legislation be subject to the legislative test found in CMA’s Health Information Privacy Code and formulated in light of this process; and That there be a clear definition of the information being accorded a right of privacy and that this definition, at least in the case of health information, include identifiable information, delinked information, anonymous information and any composite information produced when health information is linked to any other information about a person from any other source; and That, at least in connection with health information, the provisions of the Bill apply equally to the public and the private sectors. CMA has drafted an amendment to Bill C-6 (Appendix B) which, if accepted, would achieve all of these recommendations and adequately give Canadians the kind of privacy protection with respect to their health information that they deserve and desire.
Documents
Less detail

Regulations for genetically modified organisms

https://policybase.cma.ca/en/permalink/policy380
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Health care and patient safety
Resolution
GC99-82
That the Canadian Medical Association urge the federal government to act quickly to adopt regulations controlling the development, testing and commercialization of genetically modified organisms.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Health care and patient safety
Resolution
GC99-82
That the Canadian Medical Association urge the federal government to act quickly to adopt regulations controlling the development, testing and commercialization of genetically modified organisms.
Text
That the Canadian Medical Association urge the federal government to act quickly to adopt regulations controlling the development, testing and commercialization of genetically modified organisms.
Less detail

Response to Health Canada’s Discussion Papers on “Proposed New Labelling Requirements for Tobacco Products” and “Options for Tobacco Promotion Regulations”

https://policybase.cma.ca/en/permalink/policy1982
Last Reviewed
2018-03-03
Date
1999-03-12
Topics
Health care and patient safety
Population health/ health equity/ public health
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2018-03-03
Date
1999-03-12
Topics
Health care and patient safety
Population health/ health equity/ public health
Text
I. Introduction This document presents the position of the Canadian Medical Association (CMA)on the discussion papers “Proposed New Labelling Requirements for Tobacco Products” and “Options for Tobacco Promotion Regulations”, which were released by Health Canada on January 18, 1999. The document assesses the proposals outlined in the two papers and places them in the context of CMA’s comprehensive policy on tobacco control. The CMA is the national voice of Canadian physicians. Our mission is to provide leadership for physicians and to promote the highest standard of health and health care for Canadians. On behalf of its 45,000 members and the Canadian public, CMA performs a wide variety of functions, including advocating health promotion and disease and injury prevention policies and strategies. It is in this capacity that we present this brief, the most recent of many statements on tobacco which CMA has made since it issued its first public warning on tobacco’s hazards in 1954. We have spoken out strongly and consistently for more than forty years because physicians have first-hand experience of the havoc that tobacco plays with the lives of Canadians. Tobacco kills 45,000 people a year in this country1 - more than traffic accidents, murders, suicides, drug abuse and AIDS combined. Because many people with tobacco-related diseases do not die of them, this number greatly underestimates the actual burden of suffering caused by tobacco in Canada. This burden of disease comes with a high price tag. Health Canada estimates that tobacco costs the Canadian health care system $3.5 billion a year in direct health care expenses. This does not include the cost of the disability, lost productivity and human pain and suffering caused by tobacco, which has been estimated at between $8 and 11 billion annually.2 It is for these reasons that the CMA has consistently recommended tough legislative and regulatory measures to control tobacco use. Since the Supreme Court of Canada struck down portions of the Tobacco Products Control Act in 1995, we have advocated strong replacement legislation. We supported Bill C-71, the Tobacco Act, and welcomed its enactment in 1997; since then we have repeatedly expressed our opposition to suggested amendments that would weaken the Act. CMA now commends Health Canada on its proposal to augment the Tobacco Act with regulations to mandate strong health warnings on packages of tobacco products, and on initiating discussion on regulations to control tobacco advertising and promotion. The following discusses in detail Health Canada’s specific suggestions. II. “Option for Tobacco Promotion Regulations” Before discussing specific options it should be said that the CMA advocates the prohibition of all forms of tobacco promotion in Canada. This includes advertisements in broadcast and print media, the sale of accessories and tobacco products displaying brand names, logos or colours, and advertising at point of sale. Accordingly we view the options described in the paper as compromises rather than ideal solutions, and our recommendations should be considered from this viewpoint. a) Tobacco Products, (Sections 3.1 (a) to 3.1 (f)) The CMA recommends a total ban on advertising and promotion of tobacco products at point of sale. The eye-catching “power walls” of cigarettes that one sees in corner stores could be considered a form of advertising. CMA therefore recommends the most restrictive option proposed in the paper, i.e. that tobacco products not be displayed above counter-tops. There should be no exemption from this restriction for any store. b) Accessories and Nontobacco Products (Section 3.1 (g) to 3.1 (k)) CMA’s recommended ban on tobacco advertising extends to a ban on the sale of accessories and nontobacco products carrying tobacco brand elements. We are aware that the Tobacco Act permits the use of tobacco brand elements on nontobacco products; however, we recommend that regulations restrict their use to the greatest extent possible. c) Service (Section 3.1 (l)) We assume that this provision is intended to control in-store advertising for events sponsored by tobacco companies. CMA has publicly opposed all advertising related to such events. We note that this advertising will be removed from stores altogether by 2003, under the provisions of Bill C-42. d) Availability Signs (Sections 3.1(m) - 3.1(p)) The CMA questions the need for availability signs; however, if they are permitted, Health Canada’s regulations must ensure that they not be used as advertising. For example, the number of signs that a location can display should be limited; the text on signs should be in plain black and white font; and the content should be restricted as described in Section 3.1(p). e) Advertising (Section 3.2) Again, CMA reminds Health Canada that it opposes tobacco advertising in all forms and would prefer a total ban to the options proposed in this section. However, since the Tobacco Act permits a limited amount of advertising, we recommend that Health Canada act on its stated intent to restrict this advertising’s attractiveness to young people and its potential to reach them. Accordingly we recommend the following: * that all advertisements for tobacco products, accessories or nontobacco products displaying tobacco product brand elements carry prominent health warning messages as proposed; * that advertisements be “text-only” without illustrations or decorative fonts; * that if it is impossible to keep brand elements off advertisements, they occupy as small a space as possible; * that advertisements be print-only and restricted to adult-circulation publications, as mandated in the Tobacco Act; * that the size of advertising signs be restricted; and * that the above recommendations also apply to advertising signs in places where young persons are not permitted. The Tobacco Act allows advertising in such places with the proviso that it not be “lifestyle” related. However, the concept of "lifestyle" advertising is vague and open to broad interpretation; as such, it is difficult to police and could be easily ignored or circumvented. Therefore CMA believes that a comprehensive ban on advertising is preferable to a partial one. f) Tobacco Product Packaging (Section 3.3) Packaging is an important part of the marketing of any product, and tobacco is no exception. Cigarette packages should not serve as an advertising tool and inducement to purchase. Plain packaging would reduce the attractiveness of cigarette boxes to consumers; accordingly CMA recommends that tobacco products be sold in plain packages. We are pleased to see standardized plain packaging presented as an option in this section, and we recommend that this option be adopted. III. “Proposed New Labelling Requirements for Tobacco Products” As Health Canada’s own research indicates, package labelling is a health education tool that can reach a large number of people for minimal cost; we believe that health warning labels have contributed to raising public awareness of the dangers of smoking and the toxic content of tobacco. Accordingly, CMA supports in principle the proposals in this paper. In addition to our support for plain packaging, CMA recommends that packages of tobacco products: * Contain health warnings prominently displayed; * Display messages that are as simple and direct as possible; this applies not only to health warnings but to all proposed messages, e.g. those reminding of the ban on sales to minors; * Use messages that are supported by scientific data and focus on the health effects of tobacco rather than social norms or emotional appeals. In particular, CMA recommends eliminating the message, “Smoking is a weakness, not a strength.” We believe that this message unfairly blames the victim for an activity that is in fact an addiction, not a weakness; * Display a list of toxic ingredients and additives; and * Provide information on treatment for tobacco addiction, for example, information on nicotine replacement, advice to smokers to consult their physicians if they are ready to stop smoking, and information about available cessation programs. Packages might also include inserts containing additional information on product content and health risks. This information should also be based on scientific evidence focusing on the medical consequences of tobacco use. However, the use of inserts should be carefully evaluated in light of its possible impact on the environment. The labelling requirements proposed in this paper are consistent with the spirit of CMA’s policy. We commend Health Canada for taking these steps, and for mandating health warnings not only on cigarettes but on all tobacco products. IV. The Larger Context It is important to emphasize that CMA does not consider the proposed regulations, or any other single initiative, a “miracle cure” for Canada’s tobacco problem. Just as there are a variety of reasons why children take up the smoking habit, so it will take a variety of initiatives, working in combination, to effectively fight tobacco. We urge the government of Canada to augment its proposed regulations on labelling and promotion by: * Providing support for smoking cessation services for those who are addicted to tobacco. CMA has been involved with three of its provincial divisions in the “Mobilizing Physicians for Clinical Tobacco Intervention (MP-CTI)” project, whose purpose is to help physicians counsel their patients on how to stop smoking. Evidence shows that even brief counseling by a health professional increases the quit rate, particularly when combined with the “patch” or other nicotine replacement therapies.3 MP-CTI has provided physicians and other health professionals with motivation to make smoking cessation counseling a part of their routine and with tools to enhance their counseling practices. The CMA believes that the government should support MP-CTI and other programs that encourage evidence-based practices in health care. * Continuing to increase consumer and manufacturer tobacco taxes, raising them as high as is compatible with discouraging smuggling. In our 1998 pre-budget brief to the Standing Committee on Finance we recommended that the government gradually increase tobacco taxes, and we supported the tobacco tax increase implemented in February 1998.4 * Providing funding to ensure that Canada maintains strong, sustained and effective programs to discourage children from smoking. In 1997 the Liberal Party promised to commit $100 million over five years for tobacco control programs, including $50 million for public education5. We would like to see this amount committed as a minimum, and preferably increased. The CMA also continues to support the concept of a levy on tobacco products to fund programs to discourage tobacco use, and we urge the government to take action soon in this regard. Tobacco is the number one cause of preventable disease and death in Canada. The CMA urges the Government of Canada to deal with it as strongly as the burden it imposes on this country warrants. V. References 1. Ellison LF, Mao Y, Gibbons L Projected smoking-attributable mortality in Canada, 1991 2000. Chron Dis Can 1995; 16: 84 - 89. 2. Health Canada. Economic Costs due to Smoking (Information Sheet). Health Canada, November 1996. 3. Agency for Health Care Policy and Research. Smoking Cessation (Clinical Practice Guideline Number 18). U.S. Department of Health and Human Services, 1996. 4. Canadian Medical Association. Canadians’ Access to Quality Health Care: a System in Crisis. Brief submitted to the House of Commons Standing Committee on Finance, August 1998. 5. Liberal party. Securing our Future. Liberal Party of Canada, 1997.
Documents
Less detail

Safety of genetically modified organisms

https://policybase.cma.ca/en/permalink/policy378
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Health care and patient safety
Resolution
GC99-80
That the Canadian Medical Association ask Health Canada to ensure it obtains sound evidence of the safety of genetically modified organisms before they are authorized by Agriculture and Agri-Food Canada.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Health care and patient safety
Resolution
GC99-80
That the Canadian Medical Association ask Health Canada to ensure it obtains sound evidence of the safety of genetically modified organisms before they are authorized by Agriculture and Agri-Food Canada.
Text
That the Canadian Medical Association ask Health Canada to ensure it obtains sound evidence of the safety of genetically modified organisms before they are authorized by Agriculture and Agri-Food Canada.
Less detail

11 records – page 1 of 2.