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Acting on today's and tomorrow's health care needs: Prebudget submission to the House of Commons Standing Committee on Finance

https://policybase.cma.ca/en/permalink/policy14123
Date
2019-08-02
Topics
Health systems, system funding and performance
Population health/ health equity/ public health
  1 document  
Policy Type
Parliamentary submission
Date
2019-08-02
Topics
Health systems, system funding and performance
Population health/ health equity/ public health
Text
The Canadian Medical Association (CMA) is pleased to provide the House of Commons Standing Committee on Finance this pre-budget submission. It provides recommendations to address major pan-Canadian challenges to the health of Canadians: improve how we provide care to our growing elderly population; improve access to primary care across the country; increase digital health literacy to take advantage of the benefits of new health information technologies; and better prepare for and mitigate the health impacts of a changing climate on Canadians. Seniors Care Health systems across the country are currently struggling to meet the needs of our aging population. People aged 85 years and over—many of whom are frail—make up the fastest growing age group in Canadai. Provincial and territorial health care systems (as well as care systems for populations falling under federal jurisdiction) are facing many challenges to meet the needs of an aging population. Canadians support a strong role for the federal government in leading a national seniors strategy and working with the provinces to ensure that all Canadians have the same level of access and quality of services, no matter where they live. The 2017 federal/provincial/territorial funding agreement involving $6 billion over 10 years to improve access to home care services is a welcomed building block. But without greater investment in seniors care, health systems will not keep up. To be truly relevant and effectively respond to Canadians’ present and future needs, our health care system must provide integrated, continuing care able to meet the chronic and complex care needs of our growing and aging population. This includes recognizing the increased role for patients and their caregivers in the care process. The federal government must ensure transfers are able to keep up with the real cost of health care. Current funding levels clearly fail to do so. Health transfers are estimated to rise by 3.6% while health care costs are expected to rise by 5.1% annually over the next decade.ii Recommendation: The federal government ensure provincial and territorial health care systems meet the care needs of their aging populations by means of a demographic top-up to the Canada Health Transfer.iii Providing care often comes with a financial cost such as lost income due to the caregiver’s withdrawal from the workforce to provide care. There are also increasing out-of-pocket costs for both caregivers and care receivers for health care-related expenses—privately covered expenditures on home and long-term care for seniors are projected to grow by an average of 5.8 per cent annually—nearly 1.5 times the pace of household disposable income growth. While the federal government offers tax credits that can be claimed by care receivers/caregivers, they are significantly under-utilized. While representing a significant proportion of caregivers, those with low or no income receive little to no federal government support through these programs. Middle-income earners also receive less than those earning high incomes. 4 Recommendation: The federal government create a Seniors Care Benefit that would be an easier, fairer and more effective way to support caregivers and care receivers alike.iv Access to Care Since the mid-1990s, the federal and provincial/territorial governments (FPT) have provided sustained leadership in promoting and supporting the transformation of primary care in Canada. In 2000, the First Ministers concluded the first of three Health Accords in which they agreed to promote the establishment of primary health care teamsv supported by a $800 million Primary Health Care Transition Fund (PHCTF) funded by the federal government, but jointly governed. The PHCTF resulted in large-scale sustained change in primary care delivery models in Ontario, Quebec and Alberta with interest in other jurisdictions as well. However, the job is far from finished. Across Canada, access to primary care is challenging for many Canadians with a persistent shortage of family physicians. In 2017, 4.7 million Canadians aged 12+ reported they did not have a regular health care provider.vi Even those who have a regular provider experience wait time issues. There has been widespread interest in primary care models since the development of the College of Family Physicians of Canada’s (CFPC) vision document Family Practice: The Patient’s Medical Home (PMH), initially launched in 2011vii and recently re-launched.viii The model is founded on 10 pillars depicted in Figure 1. Figure 1. The Patient’s Medical Home, 2019 The updated model places increased emphasis on team-based care and introduces the concept of the patient’s medical neighborhood that sets out connections between the primacy care practice and all delivery points in the surrounding community. While comprehensive baseline data are lacking, it seems 5 safe to conjecture that most Canadians are not enrolled in a primary care model that would measure up to the model’s 10 pillars. Recommendation: The federal government, in concert with provinces and territories, establish a targeted fund in the amount of $1.2 billion to support a new time-limited Primary Health Care Transition Fund that would build on the success of the fund launched in 2000 with the goal of widely introducing a sustainable medical home model across jurisdictions. This would include the following key elements:
Age-sex-weighted per capita allocation across the provinces and territories;
Joint governance of the FPT governments with meaningful stakeholder engagement;
Respect for the Canada Health Act principles;
Common objectives (e.g., modeled on the CFPC Patient’s Medical Home framework);
Operating Principles specifying eligible/ineligible activities;
Reporting provisions and agreed-upon metrics; and
Sustainability plans. Digital/Virtual Care Canada and most industrialized countries will experience a digital health revolution over the next decade with great potential to improve patient and population health. Digital health can be described as the integration of the electronic collection and compilation of health data, decision support tools and analytics with the use of audio, video and other technologies to deliver preventive, diagnostic and treatment services that promote patient and population health. While most Canadian physicians’ offices and health care facilities are now using some form of electronic record keeping and most households have internet access, there remains a large deficit in using virtual care, both within jurisdictions and across provincial/territorial boundaries. Recently the CMA, the Royal College of Physicians and Surgeons of Canada and the College of Family Physicians of Canada established a Virtual Care Task Force to identify opportunities for digital health to improve health care delivery, including what regulatory changes are required for physicians to deliver care to patients within and across provincial/territorial boundaries. To take full advantage of digital health capabilities it will be essential for the population to have a functional level of digital health literacy: the ability to seek, find, understand and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem.ix This also includes the capability of communicating about one’s health to health care professionals (e.g., e-consults), self-monitoring health (e.g., patient portals) and receiving treatment online (e.g., Web-based cognitive behavioral therapy).x There are no current data available on health literacy in Canada, let alone digital health literacy. One basic barrier to achieving digital health literacy is access to, and usage of the Internet, which has been termed the “digital divide” (e.g., older Canadians and low income households are less likely to have Internet access).Error! Bookmark not defined. 6 In 2001 the federal government established the Financial Consumer Agency of Canada (FCAC). Its mandate includes informing consumers about their rights and responsibilities in dealing with financial institutions and providing information and tools to help consumers understand and shop for financial products and services.xi In 2014 the FCAC appointed a Financial Literacy Leader who has focused on financial literacy, including activities such as conducting financial capability surveys and the development of a National Strategy for Financial Literacy.xii Considering the anticipated growth of digital/virtual care it would be desirable to understand and promote digital health literacy across Canada. What the federal government has done for financial literacy could serve as a template for digital health literacy. Recommendation: The federal government establish a Digital Health Literacy Secretariat to:
Develop indicators and conducting surveys to measure and track the digital health literacy of Canadians;
Develop tools that can be used both by Canadians and their health care providers to enhance their digital health literacy; and
Assess and make recommendations on the “digital divide” that may exist among some population sub-groups due to a lack of access to information technology and lower digital health literacy. Climate Change and Health Climate change is the public health imperative of our time. There is a high level of concern among Canadians about their changing climate. A 2017 poll commissioned by Health Canada demonstrates a high level of concern among Canadians about their changing climate: 79% were convinced that climate change is happening, and of these, 53% accepted that it is a current health risk, with 40% believing it will be a health risk in the future. The World Health Organization (WHO) has identified air pollution and climate change as one of the biggest threats to global health. Health care professionals see first-hand the devastating health impacts of our changing climate including increased deaths from fine particulate matter air pollution and increased heat-related conditions. Impacts are most common in vulnerable populations such as adults over 65 years, the homeless, urban dwellers and people with a pre-existing disease. Canada’s health care system is already treating the health effects of climate change. A lack of progress in reducing emissions and building adaptive capacity threatens both human lives and the viability of Canada’s health system, with the potential to disrupt core public health infrastructure and overwhelm health services, not to mention the economic and social costs. The federal government must provide leadership to deal with the impact already being felt in Canada and around the world. Recommendation: 7 The federal government make strong commitments to minimize the impact of climate change on the health of Canadians by:
Ensuring pan-Canadian and inter-jurisdictional coordination to standardize surveillance and reporting of climate-related health impacts such as heat-related deaths, develop knowledge translation strategies to inform the public, and generate clinical and public health response plans that minimize the health impacts;
Increasing funding for research on the mental health impacts of climate change and psychosocial adaptation opportunities; and
Ensuring funding is provided to the health sector to prepare for climate change impacts through efforts to increase resiliency (i.e., risk assessments, readiness to manage disease outbreaks, sustainable practice). 8 i Statistics Canada. The Chief Public Health Officer's Report on the State of Public Health in Canada, 2014: Public Health in the Future. Ottawa: Statistics Canada; 2015. Available: http://www.phac-aspc.gc.ca/cphorsphc-respcacsp/2014/chang-eng.php; (accessed 2016 Sep 19). ii The Conference Board of Canada. Meeting the care needs of Canada’s aging population. Ottawa: The Conference Board; 2018. iii Canadian Medical Association. Meeting the demographic challenge: Investments in seniors care. Pre-budget submission to the House of Commons Standing Committee on Finance. August 3, 2018. https://policybase.cma.ca/documents/Briefpdf/BR2018-16.pdf iv The Conference Board of Canada. Measures to Better Support Seniors and Their Caregivers. March 2019. https://www.cma.ca/sites/default/files/pdf/health-advocacy/Measures-to-better-support-seniors-and-their-caregivers-e.pdf v Canadian Intergovernmental Conference Secretariat. News release – First Ministers’ meeting communiqué on health. September 11, 2000. http://www.scics.ca/en/product-produit/news-release-first-ministers-meeting-communique-on-health/. Accessed 04/22/19. vi Statistics Canada. Primary health care providers, 2017. https://www150.statcan.gc.ca/n1/en/pub/82-625-x/2019001/article/00001-eng.pdf?st=NGPiUkM5. Accessed 04/21/19. vii College of Family Physicians of Canada. A vision for Canada. Family Practice: the patient’s medical home. http://www.cfpc.ca/uploadedFiles/Resources/Resource_Items/PMH_A_Vision_for_Canada.pdf. Accessed 04/22/19. viii College of Family Physicians of Canada. The patient’s medical home 2019. https://patientsmedicalhome.ca/files/uploads/PMH_VISION2019_ENG_WEB_2.pdf. Accessed 04/21/19. ix Norman C, Skinner H. eHealth literacy: essential skills for consumer health in a networked world. J Med Internet Res 2006;8(2):e9. Doi:10.2196/jmir.8.2.e9. x Van der Vaart R, Drossaert C. Development of the digital health literacy instrument: measuring a broad spectrum of health 1.0 and health 2.0 skills. J Med Internet Res. 2017;19(1):e27. Doi:10.2196/jmir.6709. xi Financial Consumer Agency of Canada. About FCAC. xii Financial Consumer Agency of Canada. National Strategy for Financial Literacy. Phase 1: strengthening seniors’ financial literacy. https://www.canada.ca/content/dam/canada/financial-consumer-agency/migration/eng/financialliteracy/financialliteracycanada/documents/seniorsstrategyen.pdf. Accessed 06/24/19. https://www.canada.ca/en/financial-consumer-agency/corporate/about.html. Accessed 07/01/19.
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Building a Comprehensive Post-Market Surveillance System : Canadian Medical Association Response to Health Canada’s Discussion Paper “Designing a Mandatory System for Reporting Serious Adverse Reactions”

https://policybase.cma.ca/en/permalink/policy1951
Last Reviewed
2012-03-03
Date
2005-07-28
Topics
Health systems, system funding and performance
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2012-03-03
Date
2005-07-28
Topics
Health systems, system funding and performance
Text
Building a Comprehensive Post-Market Surveillance System Canadian Medical Association Response to Health Canada’s Discussion Paper “Designing a Mandatory System for Reporting Serious Adverse Reactions” Submitted to Health Canada July 28, 2005 Overview The CMA believes that all stakeholders should work together to improve adverse drug reaction (ADR) reporting, in the interests of improving patients’ safety and health. However, we believe that activity in pursuit of this end must be based on two fundamental premises: a) Reporting is only one part of a comprehensive post-market surveillance system. In order to effectively monitor the safety of Canada’s drug supply, this system should include: * a simple, comprehensive and user-friendly reporting process; * rigorous analysis of reports to identify significant threats to drug safety; * a communications system that produces useful information, distributed to health care providers and the public in a timely, easily understood manner. There is no point in enacting a mandatory reporting requirement until all of these elements are in place. We wonder why mandatory reporting has been singled out for discussion when a holistic approach to reforming Canada’s drug safety system is called for. b) Health care providers should be encouraged to participate willingly and voluntarily in the reporting process. To be successful, Canada’s post-market surveillance system will depend on the active participation of physicians and other health professionals. Experience with health system quality and safety improvement efforts over the past several years has demonstrated that meaningful acceptance is most effectively obtained when those involved are willing participants. If you build a comprehensive, efficient and effective post-market surveillance system, physicians will participate actively in it. Forcing them to participate before the system has been built will result in alienation, frustration and failure. Comments on Discussion Paper a) Is Mandatory Reporting Necessary? This is a fundamental question and the discussion paper does not satisfactorily address it. There are two reasons why we question the necessity for imposing an ADR reporting requirement on health professionals. First, as awareness of the drug-safety system’s importance has increased, the number of ADR reports has increased along with it - more than 10% in 2004, as the discussion paper notes - without a mandatory reporting requirement. Given this trend, it is highly probable that time, education, adequate resources and increasing familiarity with the surveillance system will raise reporting rates to the desired level (however defined) without mandatory reporting. Second, as the discussion paper points out, there is no evidence that mandatory reporting has been effective in other jurisdictions where it has been implemented. The paper offers no clear explanation for this lack of success. More importantly, it does not indicate how Health Canada plans to ensure that mandatory reporting will succeed in this country when it has proven ineffective elsewhere. A primary principle of any system change is that we should not repeat the mistakes of others. Before launching a program whose success has not been proven, other viable, and possibly more effective, alternatives should be examined. b) Addressing known barriers to reporting The CMA acknowledges that ADRs are under-reported, in Canada and worldwide. The discussion paper identifies a number of barriers to reporting, and its list mirrors the observations and experiences of our own members. We believe most of these barriers can, and should, be overcome. We also agree that it is necessary to raise health professionals’ awareness of the importance of, and process for, ADR reporting. But we question the curious assertion that “Mandatory reporting could raise awareness of the value of reporting simply by virtue of the public debate.” Surely there are more positive ways to raise awareness than publicly speculating about the punitive consequences of non-compliance. We suggest that instead, Health Canada work with physicians and other health professionals to address the existing barriers to reporting. Specifically, we recommend that Health Canada implement: * a well-funded and targeted awareness-raising campaign focused on provider education and positive messaging, * a user-friendly reporting system, including appropriate forms, efficient processes and adequate fees. These measures are within Health Canada’s purview in the existing policy and legislative environment. We believe they would increase reporting without the need for coercive measures. At a minimum, positive system improvements should be tried first before considering a mandatory-reporting requirement. With regard to specific questions posed in the discussion paper: Question 1: Health professionals should be explicitly protected from any liability as a result of reporting an adverse drug reaction. This should be the case regardless of whether reporting is voluntary or mandatory. Question 2: Professionals should be compensated for all meaningful work including the completion of forms and any follow-up required as a result of the information they have provided. We would be happy to expand further on this issue on request. Question 3: Issues of confidentiality should be covered in legislation. The CMA has developed an extensive and authoritative body of knowledge on privacy issues in health care, which we would be pleased to share with Health Canada. c) Improved report quality We agree that increasing the quality and richness of ADR reports is as important as increasing their number. Perhaps it is even more important, since high-quality reports allow for high-quality analysis. Mandatory reporting will not improve the quality of ADR reports; it will simply increase their quantity. It may even compromise the system’s efficiency and effectiveness by increasing the volume of clinically insignificant reports. Experience elsewhere has taught us that true quality cannot be legislated or imposed; any attempt to do so would be pointless. If ADR reports included the information listed in Table 4, this would improve their usefulness and the effectiveness of the overall surveillance process. However, it is unrealistic to expect all reports to contain this level of information. The treating physician may not be able to provide all of it, especially if he or she is not the patient’s regular primary care provider. Some of this information, particularly about outcomes, may not be available at the time of the reporting, and gathering it would require follow-up by Health Canada. Health Canada should consider measures other than mandatory reporting to improve the quality of ADR reports. The CMA suggests that consideration be given to: * Improving follow-up capacity. We agree that it should be made easier for Health Canada officials to contact reporters and request details on follow-up or outcomes. This should be considered as part of a comprehensive initiative to improve Health Canada’s capacity to analyze ADR reports. * Establishing a sentinel system. Another option for increasing high-quality reports would be to establish a “sentinel” group of practicing physicians who would contract to report all ADRs in detail. These physicians, because of their contractual obligation, would be committed to assiduous reporting. Sentinel systems could be established concurrently with efforts to increase voluntary ADR reporting by the broader health professional community. In addition to the current information provided, consideration should be given to including on reporting forms the option to allow Health Canada officials to act on information the physician provides; for example, in the reporting of sexually transmitted diseases physicians provide certain information and have the option to request that public health officials undertake follow-up and contact tracing. d) Minimize administrative burden We agree that Health Canada should give consideration to making the ADR reporting system user-friendly, non-complex and easy to integrate into the patient-care work stream. These reforms can and should be implemented regardless of whether a mandatory requirement is in place. They do not need mandatory reporting to make them work; in fact, they are more likely to encourage ADR reporting than any form of coercive legislation. Rather than making a mandatory reporting requirement “fit” with the traditional patient-care framework, we invite Health Canada to work with us to increase health professionals’ capacity to report ADRs voluntarily. We are already working with Health Canada to improve physicians’ access to drug safety material. Health Canada’s ADR reporting form can now be downloaded from the cma.ca web site, which also posts the latest drug alerts from Health Canada and from the Food and Drug Administration in the U.S. We have developed an on-line course in partnership with Health Canada, to teach physicians when and how to make ADR reports. We hope to build on this collaboration, with the goal of making it possible for physicians to report ADRs online via cma.ca. This will permit them to fit reporting more conveniently into their daily workflow. (Note: the “MedEffects” Web portal now being developed at Health Canada does not fit well into the workflow and therefore will not make reporting easier for health professionals.) In the future, we hope that ADR reporting can be built directly into the Electronic Medical Record (EMR). We think this will be a critical element in the bi-directional communicating that ADR reporting requires. It will also enable rapid integration of advisories into the EMR so that they can be available to physicians at the time they are writing a prescription. Before electronic ADR reporting can work, a standard for electronic data should be in place (at present it is not) and Health Canada should develop the capacity to accept data electronically. Health Canada’s discussion paper makes reference to cost-benefit analysis. We recommend that you take great care not to over-emphasize cost-benefit when it comes to enhancing patient safety. Meaningful improvements in the post-market surveillance system will be costly whatever solution Health Canada eventually embraces, and it is impossible to measure financially the value of safety. What is an acceptable cost for one life saved? e) Minimize Over-Reporting The discussion paper acknowledges that not all adverse reactions need be reported. We strongly agree that one of the dangers of mandatory reporting is its potential to overwhelm the system with an unmanageable flood of reports. There is no reason to require reports of minor side effects that are already known to be associated with given drugs. We agree that the reactions Health Canada most needs to know about are those which are severe and/or unexpected. If Health Canada insists on implementing a mandatory reporting system, it should be limited to these reactions (possibly with the corollary that well known serious ADRs would not need to be reported). However, the operating definitions may need clarification, and we recommend that Health Canada consult with health professionals and others on operational guidelines for defining “serious adverse reaction.” Health Canada’s desire to encourage reports on drugs approved within the last 5 years is understandable (though some drugs may be on the market for longer than this before their true risks are known). In practice, however, many physicians do not know which drugs these are, and seeking out this information may impose a heavy administrative burden. As we move toward an EMR-based reporting system, a tag on the Drug Identification Number to tell when the drug was approved will allow physicians to identify which medications require special vigilance. Appropriate reporting could be encouraged, and over-reporting discouraged, by clear guidelines as to what should be reported as well as appropriate compensation for reporting. f) Match Assessment Capacities In our opinion, this is one of the most important sections in the document. What happens once the reports have been received is crucial if we want to identify a serious drug risk as quickly as possible. Under the current system, one of the most significant barriers to physicians’ reporting is lack of confidence that anything meaningful will be done with their reports. Enhancements to the analysis function must be made concurrently with efforts to increase ADR reporting. ADR reports are only cyber-bytes or stacks of paper unless we can learn from them. This requires rigorous data analysis that can sort “signal from noise” – in other words, sift through thousands of reports, find the ones that indicate unusual events, investigate their cause, and isolate those that indicate a serious public health risk. This requires substantial resources, including an adequate number of staff with the expertise and sensitivity required for this demanding task. Unless Health Canada has this capacity, increasing the number of reports will only add to the backlog in analysts’ in-boxes. The CMA recommends that Health Canada allocate sufficient resources to enable it to effectively analyze and respond to ADR reports and other post-market surveillance information. g) Respect privacy Privacy of both patient and physician information is a significant concern. Physicians’ ethical obligation to maintain patient confidentially is central to the patient-physician relationship and must be protected. We acknowledge that issues of privacy and confidentiality must be resolved when designing an ADR reporting system, particularly as we work toward electronic communication of drug surveillance data and its incorporation into an EMR. For example, regulations should explicitly state that ADR reports are to be used only for the purpose for which they were submitted, i.e. for post-market drug surveillance. In addition, Health Canada should ensure that any privacy provisions it develops meet the legislative test outlined in Section 3.6 of CMA’s Health Information Privacy Code (Attachment I). Health Canada can be assured that physicians take their privacy obligations seriously. The CMA has been a strong and pro-active player in debate on this issue, and our Privacy Code lays the groundwork on which we believe any privacy policies involving ADR reporting should be based. h) Compliance through sanctions Physicians are motivated to report ADRs by their concern for public health and their patients’ well-being. In addition, they are guided by the CMA Code of Ethics and governed by regulatory authorities in every province. A clear ethical and professional obligation already exists to report anything that poses a serious threat to patient safety. If physicians do not comply with this obligation, sanctions are available to the provincial regulatory authorities. In fact, the most serious threat for physicians is loss of standing with the professional regulatory authority, not the courts or any external judicial system. It would be superfluous to add a second level of regulation or scrutiny when remedies already exist. The discussion paper presents few alternatives to the existing self-regulatory system. As the paper itself acknowledges, it is unrealistic to impose sanctions based on failure to report an ADR, since it is not always easy to determine whether an adverse effect is attributable to a health product. But the only suggested alternatives - requiring physicians to demonstrate knowledge, or to have the required reporting forms in their office - seem intrusive, crude and unreasonable; they are also meaningless since they have no direct relation to a physician’s failure to report. If Health Canada is considering a large outlay of taxpayers’ dollars for post-market surveillance, we suggest they target those funds to education and awareness raising, and to enhancing the system’s ability to generate and communicate meaningful signal data, rather than to enforcing a mandatory reporting system based on weak compliance measures, with no evidence of its effectiveness in other jurisdictions. Physicians who are in serious breach of their ethical and legal responsibility to report are subject to sanctions by provincial regulatory authorities. Most provincial colleges have policies or guidelines regarding timely reporting and appropriate enforcement mechanisms. Medicine’s tradition of self-regulation has served it well, and we recommend that Health Canada respect and support existing regulatory authorities as they maintain the standards for appropriate professional behaviour. As we have said before - the preferred quality improvement tools to enhance performance and encourage compliance are education and positive reinforcement, not legislation and the threat of sanctions. Conclusion In its discussion paper Health Canada has invited stakeholders to provide their input on how best to develop a mandatory system for reporting ADRs. The Canadian Medical Association believes that the best way to do this is not to develop one at all. Instead, we believe stakeholders should concentrate on building a sustainable, robust and effective post-market surveillance system which: * encourages and facilitates voluntary reporting, by designing a simple and efficient process that can be incorporated into a physician’s daily workflow; * effectively uses reporting data to identify major public health risks; * communicates drug safety information to providers and the public in a timely, meaningful and practical way. The CMA is committed to working, in partnership with Health Canada and other stakeholders, toward the ultimate goal of a responsive, efficient and effective post-market drug surveillance system. This is part of our long-standing commitment to optimizing Canadians’ safety and health, and achieving our vision of a healthy population and a vibrant medical profession.
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International Medical Graduates : Notes for an address by Dr. Albert J. Schumacher, President, Canadian Medical Association : Presentation to the Standing Committee on Citizenship and Immigration

https://policybase.cma.ca/en/permalink/policy2006
Last Reviewed
2012-03-03
Date
2005-02-17
Topics
Health human resources
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2012-03-03
Date
2005-02-17
Topics
Health human resources
Text
Good afternoon, I am Dr. Albert Schumacher, President of the Canadian Medical Association (CMA) and a family physician from Windsor, Ontario. With me today is Dr. Todd Watkins, Director, Office of Professional Services at CMA and also a family physician. It is estimated that some 4.5 million Canadians have had trouble finding a family doctor, while more than 3 million Canadians do not have regular access to one. Long waiting lists for consultations and specialized diagnostic and therapeutic procedures suggest there is a shortage of specialists. Including time spent on call, Canada’s physicians worked an average of 70 to 80 hours a week. Of the 21,000 physicians surveyed in the recently released National Physicians’ Survey, over a quarter said they plan to reduce their work week within the next two years. 60% of family doctors either limit the number of new patients they see or have closed their practices. At the same time, the average age of physicians in Canada is 48 years with 32% 55 years of age or older. Almost 4000 physicians may retire in the next two years. There is a “perfect storm” brewing in terms of health human resource in Canada. The message I hope to leave with you today is that the valuable participation of International Medical Graduates (IMGs) in our medical workforce must be part of a coordinated pan-Canadian plan that strives to address the double imperatives of immigration policies that are fair and policies that in the short, medium and longer term will ensure greater self-sufficiency in the education and training of physicians in Canada. Today I am going to focus on three things: Number one: clarify some of the myths about IMGs in Canada; Number two: stress the need for greater capacity in Canada’s medical education and training infrastructure; and Lastly: emphasize the importance of a national standard for licensure. Myths There are a few myths that abound about IMGs in Canada. If you were to believe some of what you read or hear in the media you might gather that it is next to impossible for international medical graduates to enter the practice of medicine in Canada. Nothing could be further from the truth. As of last month, almost one quarter of the physicians working in our health care system received their medical degree in a country other than Canada. This proportion has declined by only 2% since the 1960s. Estimates peg the number of IMGs arriving in Canada with pre-arranged employment licensed to practice each year at 400. Quite simply, our health care system could not function without the critical contributions of qualified international medical graduates (IMGs). Also, many IMGs access the postgraduate training system in Canada. As of December 2004 there were 316 IMGs who were either Canadian citizens or permanent residents in their first year of postgraduate residency training – this represents 15% of the total number of first-year trainees. In the past few years only a few provinces have greatly expanded opportunities for assessing the clinical skills of IMGs and providing supplementary training and practice opportunities. Just two weekends ago some 550 IMG’s participated in the Ontario Provincial IMG Clinical Assessment which was offered at four medical schools across the province. This will lead to some 200 IMGs being licensed to practice in Ontario. Other provinces have similar programs. I would note that the initiatives of the federal government announced by the Honourable Hedy Fry in March 2004 have been very helpful in communicating information about and raising awareness of the requirements to practice medicine in Canada. Some $3 million announced at that time was provided to assist provinces and territories in assessing IMGs and will add at least 100 internationally trained physicians into the system. I am optimistic that her continued collaborative efforts with the medical community will result in positive changes. So, has Canada closed its borders to IMGs? Hardly. Can more be done to achieve fairness? Absolutely. Capacity I can not stress strongly enough the need to increase the capacity of Canada’s undergraduate medical education and postgraduate training system. There are some who think that the fastest and least expensive way of meeting our medical workforce requirements is to simply recruit medical graduates from other countries. In the short term this is a major part of the fix. It is, however, no substitute for a “made in Canada” solution for the long term. As a long-term policy it fails to recognize the fact that the countries from which we poach these IMGs can ill afford to lose them. We are simply not pulling our weight as a country in educating and training future physicians. As my predecessor, Dr. Sunil Patel told his Committee last April, in 2002 there were roughly 6.5 first year medical school places per 100,000 population in Canada – just over one-half of the UK’s rate of 12.2 per 100,000. The CMA has recommended a 2007 target of 2500 first year medical positions and at the moment we are tracking toward 2300. Over reliance on IMGs also fails to appreciate the critical role played by Canada’s academic health science centres. These institutions have a three-fold mission of teaching, research and the provision of a great deal of patient care and these three components are inextricably linked. Expanded capacity will work to the benefit of both Canadians aspiring to attain a medical education and IMGs. For example, in 2004 of the 657 IMGs entering second iteration of the residency match, just 87 or 13% were successful. We need to expand capacity not only within academic health sciences centres themselves, but we need to recruit and support clinical teachers out in the community. This is crucial, especially for the IMG assessment programs now being rolled out. But most importantly, an enhanced education and training infrastructure will help meet the future health needs of Canadians. The goal that had been identified in the 2004 First Minister’s Agreement, specified $250 million a year beginning in 2009-10 through 2013-14 “primarily for health human resources” training and hiring. However, Bill C-39, which was recently tabled to implement provisions of the 10-year plan by creating the Wait Times Reduction Fund, falls short of what Canadians deserve and expect. Specifically, it stipulates theses dollars may be used for multiple purposes. This failure to recognize the critical shortage of health care professionals by dedicating specific dollars to the issue now could mean the promised investments may never be made to enhance health human resources. The temptation will be to continue to rely on “beggar thy neighbour” policies. However, Canada can and must do better to pull its own weight. Importance of a National Standard As the national organization representing Canada’s physicians we have a direct interest in working with government to ensure Canadians have access to health care when they need it. The CMA has a role in medical and health education in the accreditation of undergraduate medical education and the accreditation of the training programs of some 15 health disciplines. However, the CMA is not a regulator. We do not grant credentials or license physicians. Regulation of medicine falls under the purview of the provincial and territorial colleges of physicians and credentials are granted by the College of Family Physicians of Canada, the Royal College of Physicians and Surgeons of Canada and the College des Médecins du Quebec. If medicine has a lesson to offer other professions and occupations it is in the value of having a national standard. While health is the constitutional responsibility of the provinces and territories, medicine has been able to realize a national standard for portable eligibility for licensure across Canada. Beginning in 1992 the basis for licensure in all provinces/territories except Quebec has been the successful completion of the two-part Qualifying Examination of the Medical Council of Canada plus certification by either the College of Family Physicians of Canada or the Royal College of Physicians and Surgeons of Canada. The procedures in place in Quebec are very similar. To be sure there can be interpretation around the application of the standard, but without a doubt it has provided a significant degree of transparency and uniformity about what is required to practice medicine in Canada. This not only promotes a concordance between the programs offered by our 16 (soon to be 17) medical schools but also provides a basis for the assessment of international programs. On this latter point, the Institute for International Medical Education has a database that contains information on more than 1,800 medical schools in 165 countries around the world. Conclusion During pre-budget hearings last fall, I submitted to the Standing Committee on Finance our plan to address health human resources shortages. As was the case then, IMGs are a critical part of the CMA plan. A plan that has as its core the belief that Canada must adopt a policy of increased self-sufficiency in the production of physicians in Canada. This involves: * increased opportunities for Canadians to pursue medical education in Canada; * enhanced opportunities for practising physicians to return for additional training; * strategies to retain physicians in practice and in Canada; and * increased opportunities for IMGs who are permanent residents or citizens of Canada to access post-MD training leading to licensure/certification and the practice of medicine in Canada. This set of imperatives needs to be balanced against a need for fairness. Fairness to ensure those who need to obtain further medical training are able to do so. And, fairness to young Canadians who deserve a chance to pursue a career in medicine. I appreciate the opportunity of entering into a dialogue with members of the Committee and look forward to your questions. Thank you.
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Joint Submission to the Subcommittee on Sport-Related Concussions in Canada House of Commons Standing Committee on Health

https://policybase.cma.ca/en/permalink/policy14080
Date
2019-01-29
Topics
Health care and patient safety
  1 document  
Policy Type
Parliamentary submission
Date
2019-01-29
Topics
Health care and patient safety
Text
Based on a well-established collaboration addressing concussion, the Canadian Academy of Sport and Exercise Medicine (CASEM) the College of Family Physicians of Canada (CFPC), and the Canadian Medical Association (CMA) are pleased to submit this brief to the Subcommittee on Sport-Related Concussions (SCSC) of the House of Commons Standing Committee on Health. About the Canadian Academy of Sport and Exercise Medicine (CASEM) CASEM is a physician member-based organization comprised of 850 medical doctors from many specialties who have specialized training and skills in sport and exercise related injuries/illnesses for active patients of all ages and abilities, including concussion care. CASEM physicians hold national and international leadership roles in concussion care. Namely, at the national level, CASEM chairs the Canadian Concussion Collaborative (CCC) and at the international level, several CASEM members played leadership roles in the development of the International Consensus Statements on Concussion in Sport which is the key document that establishes concussion management recommendation every 4 years. About the College of Family Physicians of Canada (CFPC) The CFPC is the professional organization that represents more than 38,000 family physician members across the country. The College establishes the standards for, and accredits, postgraduate family medicine training for Canada’s 17 medical schools. It reviews and certifies continuing professional development programs, and materials, that enable family physicians to meet certification and licensing requirements. The CFPC provides high-quality services, supports family medicine teaching and research, and advocates on behalf of family physicians and the specialty of family medicine. About the Canadian Medical Association (CMA) The Canadian Medical Association unites 85,000 physicians on national health and medical matters. Formed in Quebec City in 1867, the CMA’s rich history of advocacy led to some of Canada’s most important health policy changes. As we look to the future, the CMA will focus on advocating for a healthy population and a vibrant profession. Along with CASEM, the CMA is a co-founding member of the CCC. 3 KEY KEY THEMESTHEMES AND RECOMMENDATIONSAND RECOMMENDATIONS: In this brief, CASEM, CFPC, and the CMA submit a series of recommendations under two key themes. Taken as a whole, we believe these will help inform the Subcommittee’s study on how to improve concussion awareness, prevention and treatment for all Canadians. Background information regarding the groups and initiatives mentioned in the key themes and recommendations, is provided in the subsequent part of this document. KEY THEME #1: The impacts of concussion and the benefits of awareness efforts are slowly becoming better known at the higher levels of sport participation that received support for the implementation of proper concussion management strategies (namely through the Canadian Concussion Protocol Harmonization Project). Further efforts and government funding should address the issue at all levels of sport participation. This must include school-based sport programs, and concussion occurring in other contexts (e.g. leisure, occupation, etc.). RECOMMENDATIONS related to key theme #1: #1.1 The federal government should commission and fund the development and evaluation of additional efforts to improve awareness and proper management of concussion at all levels of sport participation and contexts where concussions occur in Canada. #1.2 Since “key aspects of concussion prevention, detection and management occur prior to, as well as after, the initial medical intervention”1, “public health strategies should be developed and implemented to address the issue of concussions.”1 #1.3 Given their competencies and expertise in this area, “family physicians2 and sport and exercise medicine (SEM) physicians should play a central role in the design and implementation of strategies that work in conjunction with families, schools, sports organizations, employers and governments to educate, support and empower the implementation of proper concussion prevention, detection and management protocols.”1 #1.4 Any future effort to improve concussion awareness and management should, whenever possible, be evidenced-informed, and aim for synergy with ongoing Canadian initiatives. #1.5 Innovative dissemination strategies that have the potential to reach all levels of sport participation and contexts where concussions occur should be considered and evaluated (e.g. massive open online course or MOOC 3). 1 The Role of Family Physicians and physicians with Added Competencies in Sport and Exercise Medicine in a Public Health Approach to Concussions. A joint position statement of CASEM, CFPC, and the CMA. 2017 https://www.cfpc.ca/ProjectAssets/Templates/Resource.aspx?id=4319&langType=4105 2 This is not meant to exclude the possible role of other health care disciplines, such as nurse practitioners, that can be involved in the diagnosis and medical management of concussions in some Canadian jurisdictions. 3 https://www.ulaval.ca/les-etudes/mooc-formation-en-ligne-ouverte-a-tous/commotion-cerebrale-prevention-detection-et-gestion-dans-mon-milieu.html 4 KEY THEME #2: For the majority of Canadians affected by a concussion, family physicians play a central role in concussion identification and management through the recovery process. However, where persistent concussion symptoms arise, family physicians and their patients require timely access to SEM physicians, and multidisciplinary care for the development and implementation of individualized treatment plans. As it presently stands, access to such expert medical and multidisciplinary resources for concussion is very limited (especially in rural and remote regions). To complicate matters, Canadians affected by a concussion are all too often uncertain how best to navigate a health care system that isn’t well organized to address their unique needs. RECOMMENDATIONS related to key theme #2: #2.1 Medical schools and organizations should maintain continuous efforts aiming for the rapid integration of the most current clinical practice recommendations about concussion. #2.2 Initial care for Canadians affected by a concussion should be coordinated by the patient’s family physician. #2.3 To work in collaboration with their family physicians, patients affected by persistent symptoms following a concussion should have timely access to medical experts on concussion and allied professionals with expertise in concussion management. #2.4 The potential of telemedicine strategies or other virtual network to improve access to concussion experts for support in the management of concussion should be considered and evaluated. BACKGROUNDBACKGROUND:: The challenging dynamics of concussion: Sport-related concussion seriously impacts the health and well-being of Canadians across the country; to say nothing of the costs to the health care system and concussed individuals. Canadian statistics show that among children and youth (10-18 years) who visit an emergency department for a sports-related head injury, 39% were diagnosed with concussions, while a further 24% were possible concussions.4 Between 2003 and 2013 in Ontario, a 4.4-fold increase of pediatric concussion-related consultations has been observed, with a sharp increase between 2010 and 2013 and nearly 35000 visits in 2013.5 Although, the precise reasons for this increased incidence of concussion are unknown, the study suggests that “…concussion education and awareness, improved diagnosis of 4 https://www.canada.ca/en/canadian-heritage/services/concussions.html 5 Zemek et al. J Pediatr 2017; 181: 222-8 (https://doi.org/10.1016/j.jpeds.2016.10.067) 5 concussion, and revised concussion guidelines advocating stricter follow-up…” played an important role. The body of knowledge regarding concussion is rapidly and constantly changing; a dynamic that is unlikely to change for the foreseeable future. One important limitation of our knowledge about concussion is the lack of information on the true burden of concussion in Canada. A significant proportion of all concussions are not captured by traditional health-related databases, or clinical research, because individuals often do not consult a physician. One positive and recent development that will help better understand the true burden of sport related concussion in youth occurred in November 2018 when a group of more than 30 Canadian researchers including CASEM and CFPC leaders on concussion received $12 million from the National Football League “Play Smart, Play Safe” initiative.6 This 3-year longitudinal cohort study will evaluate diagnostic tools, prognostic indicators, prevention strategies, and treatment strategies. This study will characterize the true incidence rate and recovery characteristics of concussion in high school-based sport settings. Psychological and social factors must also be considered. Attitudes and awareness towards injury are complicating factors that highlight the need for improved concussion prevention and awareness. These include injury minimization, the lack of a visible injury, and a general lack of both pre and post-injury awareness. Those closely associated with a concussed individual (coaches, co-workers, employers, or an injured individual themselves) may have an incentive, or experience pressure, to hide/downplay injury or avoid medical assessment due to stigma.7 The natural human predilection towards downplaying the nature of injury is another important factor to consider, especially where, post-injury, the effects aren’t clearly visible. A concussed individual may lack the mental acuity to be able to understand that their symptoms require medical attention. Another area to consider is the availability of qualified health care resources. Family physicians, whether in primary care settings or emergency departments, and SEM physicians, are generally the first medical professionals seen by a person who has sustained a concussion during a sport, leisure or occupational activity. They are the first point of contact for proper management, advice, and education regarding that person’s gradual return to cognitive (e.g. school and work) and physical activities (e.g. sport, exercise or work).8 Gaps in medical training, and the fast-paced evolution of concussion best practices, means that clinicians sometimes struggle to maintain up-to-date knowledge regarding the detection and treatment of concussions. These factors are further complicated by ambiguous scopes of practice across the multidisciplinary professions involved 6 https://www.ucalgary.ca/utoday/issue/2018-11-16/nfl-gives-significant-funding-help-youth-shred-burden-concussion 7 Delaney J, Caron J, Correa J, et al. Why Professional Football Players Choose not to Reveal their Concussion Symptoms During a Practice or Game. Clin J Sport Med, 2018, 28(1): 1-12. 8 College of Family Physicians of Canada & Canadian Academy of Sport and Exercise. Joint Position Statement - The Role of Family Physicians and Physicians with Added Competencies in Sport and Exercise Medicine in a Public Health Approach to Concussions. 2017. 6 with concussion management. Finally, there is general lack of available medical experts on concussion to whom family physicians can refer patients that present persistent symptoms. Our recommendations also take into consideration the following factors:
The simple principles of initial concussion management6-8 are within the scope of practice of family physicians.
In the vast majority (80-90%) of cases, once simple principles of initial management have been implemented, concussion is a condition that will evolve favorably within 7-10 days.8
Even with proper initial management, some concussion patients will present with persistent symptoms that require a multidisciplinary team approach.
“Persistent symptoms” has been defined as more than 4 weeks in youth and more than 2 weeks in adults.9
Access to physicians with added competencies in concussion care (e.g. SEM Physicians, Physiatrists, Neurologists), and allied health professionals with experience in treating specific presentations of concussions is limited, especially in Canada’s rural and remote areas. CASEM & CFPC’s concussion efforts to date: Since 2012, CASEM has played a key role in the evolution of concussion care in Canada by leading the work of the CCC10. The CCC is composed of 18 health organizations concerned with concussions that aim “to improve education about concussions, and the implementation of best practices for the prevention and management of concussions”. The CFPC has been involved with the CCC from the start. In 2015, the CCC published 2 key recommendations in a document entitled “Recommendations for policy development regarding sport-related concussion prevention and management in Canada”11 that state:
Organizations responsible for operating, regulating or planning sport and sporting events with a risk of concussion should be required to develop/adapt and implement a concussion management protocol, based on current best practices, that is customized for their context and available resources.
In situations where timely and sufficient availability of medical resources qualified for concussion management is lacking, multidisciplinary collaborative approaches should be used to improve concussion management outcomes while facilitating access to medical resources where appropriate. Since 2015, the CCC has contributed a multidisciplinary health care perspective to key concussion-related initiatives in Canada. The first of these initiatives was initiated in January 2015 by Sport Canada and led to the creation of a Federal-Provincial-Territorial working group (FTP-WG) on 9 McCrory et al. Consensus statement on concussion in sport. (2017) https://bjsm.bmj.com/content/51/11/838 10 https://casem-acmse.org/resources/canadian-concussion-collaborative/ 11 https://bjsm.bmj.com/content/49/2/88 7 concussion that brings together sport, education, government and health stakeholders. Later in 2015, the mandate letters from Prime Minister Trudeau asked the Minister of Health and the Minister of Sport and Persons with Disabilities to collaborate on a national strategy on concussion. The Federal government budgeted $1.4 million to allow the Public Health Agency of Canada to work with provinces and territories to develop harmonized concussion management guidelines across Canada.12 Most of that work has been accomplished by funding to Parachute for the development of the Canadian guideline on concussion in sport.13 Members of the CCC and concussion leaders from the CFPC and CASEM were closely involved. Since 2016, one of the CASEM and CFPC leaders on concussion developed a Massive Open Online Course (MOOC) to develop general awareness on concussion and facilitate the implementation of proper concussion management protocols in specific settings. After 4 iterations of that French language MOOC, over 8000 participants have accessed it. Presently an English version is being developed in collaboration between Laval University and the University of Calgary. In August 2017, CASEM and CFPC, published a joint position statement entitled “The role of family physicians and physicians with added competencies in sport and exercise medicine in a public health approach to concussions”14 that is directly related to the recommendations presented in this brief. Finally, since mid-2018, CASEM and CFPC have partnered with the Canadian Medical Association (CMA) to completely revamp the CMA’s policy on Head Injury in Sport. To foster high-level advocacy, cultural sensitivity, and awareness messaging on concussion, it has been redeveloped for a host of target audiences from all relevant perspectives. It is set for release in early 2019. CONCLUSIONCONCLUSION: Concussion is a pressing public health issue in Canada. The members of the SCSC should keep in mind that concussions are not limited to higher level organized sport. It’s a sudden, and unwanted challenge that hundreds of unsuspecting and unprepared Canadians face each day. These concussions occur in a range of situations, inside and outside of sports settings, and often go untreated; with a potential for tragic consequences. To truly address the issue and make progress towards the objectives expressed by Prime Minister Trudeau in the mandate letters, the Government of Canada must provide significant investments. To make progress across the spectrum of sports, leisure and other context where concussions 12 https://www.budget.gc.ca/2016/docs/plan/ch5-en.html 13 The Canadian guideline on concussion in sport was part of the Parachute-led Concussion Protocol Harmonization Project. 14 https://www.cfpc.ca/ProjectAssets/Templates/Resource.aspx?id=4319&langType=4105 8 occur, the Government funding should minimally represent a 10-fold increase from the initial $1.4M budgeted in 2016. With their respective membership, tools and resources, CASEM and the CFPC can play an important role in addressing the burden that concussions place on Canadians. With this brief, we are expressing the willingness of our organizations to collaborate with the government in the design and implementation of strategies to systemically address concussion from all causes as a public health issue. To be successful this must occur across all levels of sport participation and include: leisure, school-based sports, occupational activities and address the rural and remote areas of the country. On behalf of CASEM, and the CFPC, we would welcome the opportunity, and privilege, to present and discuss these recommendations with your Committee. Respectfully submitted, Dr. Paul Watson CASEM President Dr. Pierre Fremont Chair of the CFPC’s SEM Committee and Past President of CASEM Dr.Tatiana Jevremovic Past President of CASEM Dr. Gigi Osler CMA President Contacts: Dawn Haworth, Executive Director, CASEM dhaworth@casem-acmse.org 613 748 5851 – ext 1 Artem Safarov, Director of Health Policy and Government Relations, CFPC asafarov@cfpc.ca 905-629-0900 x 249
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Letter to the International Joint Commission on the 2004 Progress Report addressing air quality

https://policybase.cma.ca/en/permalink/policy1952
Last Reviewed
2012-03-03
Date
2005-02-11
Topics
Population health/ health equity/ public health
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2012-03-03
Date
2005-02-11
Topics
Population health/ health equity/ public health
Text
On behalf of Canada’s physicians, the Canadian Medical Association (CMA) would like to take this opportunity to provide comments to the International Joint Commission on the 2004 Progress Report addressing air quality. The Association, first founded in 1867, currently represents more than 59,000 physicians across the country. Our mission includes advocating for the highest standard of health and care for all Canadians and we are committed to activities that will result in healthy public policy which support health and the environment. The environment, as a determinant of health, is a major concern for the general public as well as health care providers. Air pollution affects the health of all Canadians, but particularly children, the elderly and those with respiratory and cardiac conditions. Poor air quality can provoke devastating health effects. Every day physicians come face to face with the reality of an unhealthy environment and its effects on our patients. The impact can be seen in terms of increased frequency of symptoms, medication use, physician visits, emergency room visits, hospitalizations and premature deaths. Canadians and Americans breathe the same air, drink the same water, and share a common responsibility to provide future generations with a healthy environment. This is why the Canada-U.S. agreement to address and resolve environmental issues is so important. The U.S.-Canada Air Quality Agreement established a formal and flexible method of addressing trans-boundary air pollution and laid the groundwork for cooperation between the United States and Canada on very important air quality issues. Under the Air Quality Agreement of 1991, both countries have made progress in coordinating and implementing their acid rain control programs and have focused activities on ground level ozone since 2000. The improvements, as described in the 2004 Progress Report are commendable. But while many of the parties’ emission reduction commitments are on-track, dangerous air pollution continues to blow both ways across our borders. This suggests that the measures included in this agreement are not sufficient to ensure that Canadians have clean air to breathe. In fact, we believe that future evaluations should describe air quality improvement as the outcome of interest, in addition to cataloguing emission reduction initiatives, as is done in the 2004 Progress Report. The 2004 Progress Report, prepared by Environment Canada and the United States Environmental Protection Agency, is the seventh biennial report compiled under the 1991 United States-Canada Air Quality Agreement. Ground level ozone, a primary component of smog, directly contributes to air quality and health. The commitment to reduce ground level ozone under the 2000 Agreement has the potential to improve air quality and the quality of life of literally millions of people. As indicated in the Progress Report 2004, Canada is “on track to implement all of its commitments for vehicles, engines and fuels” in order to reduce ground level ozone. However, the stationary emissions of NOx remain above target levels. An aggressive strategy to reduce NOx and VOC to lessen smog, and the adverse health impact on Canadians and Americans is urgently required. Smog and climate change are not distinct problems. In fact, a large proportion of the smog pollutants that cause serious cardiac and respiratory problems in Canada are emitted from the same tailpipes and industrial smokestacks as the greenhouse gases, which the Kyoto agreement aims to reduce. Canada’s commitment to the Kyoto Accord provides an opportunity to significantly reduce smog and achieve cleaner air for all Canadians to breathe. The purchasing of emission credits from foreign countries to make up for a shortfall in the reductions of greenhouse-gas emissions Canada agreed to in the Kyoto accord is clearly short-term thinking that does not address the long term goals outlined in the accord. Climate change measures under the Accord will yield additional benefits through improved local and regional air quality. But more can and needs to be done. Canada must bring air pollution down to safe levels and to cut greenhouse gas emissions to halt climate change. For these reasons, CMA recommended that the Prime Minister commit to choosing a climate change strategy that satisfies Canada’s international commitments while maximizing the clean air co-benefits and smog–reduction potential of any greenhouse gas reduction initiatives. Canada’s physicians are concerned about the pollutants that are affecting the health of Canadians, and believe that there should be appropriate mechanisms to warn those who are vulnerable and at risk, so that they can act to protect themselves from contaminants in the air, water, or food. We have called on the government of Canada to establish a national Air Quality Index so that real-time air quality information and predictive forecasting is made available to all Canadians. Health-based reporting about pollutants is a way to allow Canadians to partner in their own health protection, while such pollutants are being addressed by policies aimed at producing cleaner air. Environment Canada and Health Canada have long been developing a health-based Air Quality Index, which would incorporate the most recent health science and make air quality forecasts and current ambient conditions available across the nation. We contend this is a key initiative and we urge this work be expedited. CMA reaffirms our support for the Kyoto protocol and in the best interest of Canadians, urges the government to establish a national Air Quality Index. There is a fundamental role for governments in preventing and controlling smog and poor air quality through healthy public policy and regulations. There remains much work to be done. CMA’s vision of a healthy population for Canada underpins our commitment to advocate for clean air. I would like to thank you and the IJC for your continued commitment to improving air quality for Canadians and Americans. It is through efforts like this, that our mutual goal for a clean, healthy and safe environment may be realized. We look forward to your next report demonstrating even further gains in achieving high air quality. Yours truly, Albert J. Schumacher, MD President AJS/jns
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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.
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Mental Health, Mental Illness & Addiction : CMA Submission to the Standing Committee on Social affairs, Science and Technology

https://policybase.cma.ca/en/permalink/policy1950
Last Reviewed
2012-03-03
Date
2005-04-20
Topics
Population health/ health equity/ public health
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2012-03-03
Date
2005-04-20
Topics
Population health/ health equity/ public health
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
Text
The Canadian Medical Association (CMA) welcomes the opportunity to provide input to the Standing Senate Committee on Social Affairs, Science and Technology’s study of mental health, mental illness and addiction in Canada. The Committee is to be commended for their commitment to the examination of the state of mental health services and addiction treatment in Canada. The Interim Report Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada is a most comprehensive and thorough study. It highlights and reinforces the myriad of players, programs and services as well as the scope and breadth of concerns related to mental health/mental illness care. The Issues and Options paper cogently outlines all the major issues facing mental health, mental illness and addiction care today and provides a platform to stimulate an important public debate on the direction that should be taken to address mental health reform in Canada. The CMA was pleased to appear before the Committee during its deliberations in March of 2004 to speak to the issues facing mental health and mental illness care and put forward recommendations for action by the federal government. The CMA recommended: * developing legislative or regulatory amendments to ensure that psychiatric hospitals are subject to the five program criteria and the conditions of the Canada Health Act, * adjusting the Canada Health Transfer to provide net new federal cash for these additional insured services, * re-establishing an adequately resourced federal unit focussed on mental health, mental illness and addiction, * reviewing federal policies and programs to ensure that mental illness is on par, in terms of benefits, with other chronic diseases and disabilities, * mounting a national public awareness strategy to address the stigma associated with mental illness and addiction. The physicians of Canada continue to support these recommendations. While the Committee has asked for input on a number of important issues in its Issues and Options paper, CMA will focus on the role of the federal government in three areas: * national leadership and intergovernmental collaboration, * accessibility, * accountability. We understand that the Canadian Psychiatric Association, the College of Family Physicians of Canada and the Canadian Paediatric Society will, in their submissions to the Standing Committee, address specific issues of concern to the medical profession in the areas of primary care, child and adolescent mental health and mental illness services, and psychiatric care. The CMA supports the positions of these national specialty organizations. THE ROLE OF THE FEDERAL GOVERNMENT The economic burden of mental health problems is estimated, at a minimum, at $14.4 billion annually. 1 Mental illness and addiction affects one in five Canadians during their lifetime. According to a 2003 Canadian Community Health Survey, 2.6 million Canadians over the age of 15 reported symptoms consistent with mental illness during the past year. Mental illness impacts people in the prime of their life. Estimates from 1998 indicates that 24% of all deaths among those aged 15-24 and 16% of all deaths among those aged 25- 44 are from suicide 2. In contrast, the 2003 outbreak of Severe Acute Respiratory Syndrome (SARS) that tragically, resulted in 483 cases and 44 deaths with an estimated economic impact in the Greater Toronto Area of 2 billion dollars served as the ‘wake-up call’ that galvanized the federal government into paying attention to public health in Canada. In the aftermath of SARS, the federal government appointed a Minister of State for Public Health, established the Public Health Agency of Canada and selected a Chief Public Health Officer for Canada. Nine hundred and sixty five million dollars has been invested by the federal government in public health in the two federal budgets following SARS and a new spirit of federal-provincial-territorial cooperation on public health issues has been spawned. The evidence of the enormous burden that mental illness and addiction places on Canadian society has been a clarion call to many concerned stakeholder organizations across the country to mobilize and search for solutions. It is astounding that the federal government has not heard the call. And it is hard to imagine just what more could constitute a ‘wake-up call’ for mental health care. In fact the federal government falls woefully short of fulfilling its responsibilities to the people of Canada. The Interim report of the Committee correctly outlines the state of fragmentation and gaps in services to those specific populations under direct federal jurisdiction. It also notes the ‘apparent ambivalence’ over the years by the federal government about the place of mental health services within publicly funded health care. This ambivalent approach also spills over to the broad national policies and programs of the federal government that can impact those suffering from mental illness, addiction or poor mental health. The federal government has systematically excluded mental health services since the earliest days of Medicare. Mental illness has been treated like a second class disease with little dedicated federal funding, and with programs and services not subject to national criteria or conditions as are set out in the Canada Health Act. In fact, the federal government could be seen as moving in reverse with the downgrading of mental health resources within Health Canada through the 1980s and 1990s. Leadership The CMA firmly believes that strong federal leadership is required to address the sometimes invisible epidemic of mental health problems and addiction in Canada.The government must lead by example and begin by ‘cleaning up its own backyard’ in terms of its direct role as service provider to those Canadians under its jurisdiction. It should take a ‘whole of government’ approach that recognizes the interplay of health services, education, housing, income, community and the justice system on mental health and mental illness care. Further, the federal government has a responsibility to ensure that there is equitable access to necessary services and supports across the county. This will require a strong degree of cooperation and collaboration among provinces and territories and the federal government. The federal, provincial and territorial governments must come together to develop a national action plan on mental health, mental illness and addiction modeled on the framework developed by the Canadian Alliance on Mental Illness and Mental Health in 2000. The CMA has noted the options put forward to elevate mental health, mental illness and addiction in government priorities: A Canada Mental Health Act or a Minister of State for mental health, mental illness and addiction. We continue to believe that an adequately resourced, dedicated federal centre focussed on mental health, mental illness and addiction must be established within Health Canada. This will ensure that mental health, mental illness and addiction are not seen as separate from the health care system but an integral component of acute care, chronic care and public health services. A centre with dedicated funding and leadership at the Associate Deputy Minister level is required to signal the intent of the government to seriously address mental health, mental illness and addiction in terms of both its direct and indirect roles. This centre must also have the authority to coordinate across all federal departments and lead F/P/T collaborations on mental health, mental illness and addiction. The responsibility of the provinces and territories for the delivery of services for mental illness and addiction within their jurisdictions is unquestioned. But, as CMA has noted in relation to the acute care and public health systems, we have a concern with the disparity of these services across the country. We believe that the federal government must take a lead role, working with the provinces and territories, in establishing mental health goals, standards for service delivery, disseminating best practices, coordinating surveillance and research, undertaking human resource planning and reducing stigma. It is unfortunate that the Council of Deputy Ministers of Health withdrew its support of the F/P/T Advisory Network on Mental Health in 1990. The lack of a credible and resourced F/P/T forum for information sharing, planning and policy formation has impeded inter-provincial cooperation and collaboration for over a decade. F/P/T collaboration is essential to ensure adequacy of services in all parts of the country and end the piecemeal approach to mental illness and addiction. It would also encourage pan Canadian research and knowledge transfer. The CMA therefore recommends: 1. That the federal government create and adequately resource a Centre for Mental Health within Health Canada led by an Associate Deputy Minister with a mandate to initiate and coordinate activity across all federal departments to address the federal government’s responsibilities to specific populations under its direct jurisdiction, to oversee national policies and programs that impact on mental health, mental illness and addiction and to support intergovernmental collaboration. 2. That the federal government re-establish and adequately resource the F/P/T Advisory Network on Mental Health with a broader mandate to encompass mental health, mental illness and addiction. 3. That the federal government work with the provinces, territories and the Canadian Alliance on Mental Illness and Mental Health to establish a Pan Canadian Mental Health, Mental Illness and Addiction Network to develop a national mental health strategy, mental health goals and action plan; and serve as a forum for inter-provincial cooperation and collaboration on mental health, mental illness and addiction. Accessibility Accessibility leads the way as the number one concern regarding the health care system for patients and their families. This concern is in no way lessened when we look at access to mental health and addiction services and programs. The CMA has long identified accessibility as an essential issue that must be addressed to improve the health care system. In recent years, public concern over timely access has been growing. Recent polling for the CMA has shown that a significant majority of Canadians have suffered increased pain and anxiety while waiting for health care services. 3 The same polling clearly demonstrated that the vast majority of Canadians attributed long waits for health care services to a lack of available health providers and infrastructure. More recently, another opinion poll found that Canadians gave the health care system an overall grade of “C” in terms of their confidence that the system will provide the same level and quality of service to future generations. 4 The 2003 Hospital Waiting Lists in Canada report released by the Fraser Institute included a psychiatry waiting list survey which revealed that wait times from referral by a GP ranges from a Canadian average of 8.5 weeks to 20 weeks in New Brunswick. Patients then face a further delay as they wait for appropriate treatment after they have been seen by the specialist. This wait can be anywhere from 4 weeks to 19 weeks depending on the treatment or program. 5 The 2004 National Physician Survey, a collaboration between the CMA, the Royal College of Physicians and Surgeons of Canada, and the College of Family Physicians of Canada, found that 65.6% of physicians rated accessibility to psychiatrists as fair or poor. 6 These statistics do not reflect those patients that do not make it on to lengthy waiting lists where access is effectively denied. In September 2004 the CMA released a national plan of action to address issues of accessibility, availability and sustainability across the health system 7 . Better Access Better Health lays out a number of recommendations designed to ensure that access exists at times of need, and to improve system capacity and the sustainability of the system. While Better Access Better Health speaks to the health care system writ large, the provision of mental health services and addiction treatment clearly falls under this umbrella. Specific recommendations detailed in the plan of action for pan-Canadian wait-time benchmarks, a health human resource reinvestment fund, expanding the continuum of care and an increase in federal “core’ funding commitments would all have a positive impact on the accessibility of mental health and addiction services. The review of mental health policies and programs in select countries (Report 2 of the Interim Report) is striking for the similarity of problems facing mental health care. In each of the four countries studied there is concern for the adequacy of resources as well as recognition of the need to coordinate and integrate service delivery. The CMA agrees with the Committee’s commentary that: “The means for achieving these objectives that stands out from our survey of four countries is to set actionable targets that engage the entire mental health community, and to establish measurable criteria for the ongoing monitoring of reform efforts. Comprehensive human resource planning in the mental health field, as well as adequate funding for research and its dissemination are also suggested as key elements of a national strategy to foster mental health and treat mental illness.” CMA strongly supports setting national standards and targets with regard to mental health services and addiction treatment, but it must be understood that standards and targets can not be established until we have a clear and accurate picture of the current situation in Canada. Pan-Canadian research is needed to determine the availability of services across the country. Surveillance of mental illness risk factors, outcomes and services is essential to guide appropriate development and delivery of programs. Research is also needed to determine ways of integrating the delivery of mental health services between institutional and community settings. The Health Transition Fund supported 24 projects between 1997 and 2001 that made a substantial contribution toward a practical knowledge base in mental health policy and practice. The 2000 Primary Health Care Transition Fund is also supporting projects in the mental health field. For those projects that are due to be completed in 2006, they should be encouraged to put in place a prospective evaluation framework to determine the feasibility and scalability of collaborative care initiatives. As noted in Better Access Better Health availability is first and foremost about the people who provide quality care and about the tools and infrastructure they need to provide it. The shortage of family practitioners, specialists, nurses, psychologists and other health care providers within the publicly funded health care system is certainly an impediment to timely access to care. A health human resources strategy for mental health, mental illness and addiction is a first step in finding a solution to the chronic shortage of health professionals. The CMA therefore recommends: 4. That the federal government, through the Institute of Neurosciences, Mental Health and Addiction, undertake a program of surveillance and research to determine actual availability of services for mental health, mental illness and addiction across the country. 5. That the federal government in consultation with provincial and territorial governments, health care providers and patients/clients establish national standards and targets for access to services. 6. That the Institute of Neurosciences, Mental Health and Addiction and the Institute of Health Services and Policy Research within Canadian Institutes of Health Research establish a joint competition for research on ways of integrating the delivery of mental health services between institutions and community settings. 7. That the federal government undertake an evaluation of those Health Transition Fund and Primary Health Care Transition Fund projects in the mental health, mental illness and addiction field to determine the feasibility and scalability of collaborative care initiatives. 8. That the federal government work with the provinces and territories to develop a health human resource strategy for the field of mental health, mental illness and addiction. Accountability In its presentation to the Committee in March of 2004, CMA recommended that the federal government make the legislative and/or regulatory amendments necessary to ensure that psychiatric hospital services are subject to the criteria and conditions of the Canada Health Act. This would accomplish two objectives. It would signal the federal government’s serious intent to address the historical imbalance in the treatment of mental health and illness care while at the same time increase the accountability of these institutions and services to the values espoused in the Canada Health Act. This would be a very positive step, but we must also develop accountability mechanisms that can measure the quality and effectiveness of the mental health services provided. Since 2000, First Ministers and their governments have committed to reporting on numerous comparable indicators on health status, health outcomes and quality of services. In September 2002, all 14 jurisdictions including the federal government, released reports covering some 67 comparable indicators. In November 2004, these governments released their second report covering 18 indicators with a focus on health system performance including primary health care and homecare. Unfortunately, mental illness--despite its magnitude--has received little attention in these reports. Of the now 70 indicators that have been developed, only 2 directly address mental illness (potential years of life lost due to suicide and prevalence of depression). Furthermore, no performance indicators related to mental health outcomes or wait times for mental health services have been included in these reports. This is one more example of the oversight of mental illness related issues and the vicious circle that exists since few indicators makes it difficult to present the case for greater attention. The lack of information on availability of services, wait times and health outcomes for mental health services compromises governments’ ability to establish a funding framework to allocate funding equitably. Research that will reveal gaps in service delivery, and the establishment of targets should allow governments to better calculate sustainable funding levels needed to build capacity in the mental health, mental illness and addiction fields. As important as it is to ensure that mental health and addiction services within the health system are available, accessible and adequately resourced we must not lose sight of the fact that to effectively address mental health, mental illness and addiction issues services from a broad range of government sectors are required. Therefore the proposed Associate Deputy Minister for Mental Health must be accountable to ensure collaboration across sectors within the federal government. As in public health in general, a clarification of the roles and responsibilities of the various levels and sectors of government and health providers involved in the provision of mental health, mental illness and addiction services would allow for greater accountability. The CMA therefore recommends: 9. That performance indicators for mental health services and support, based on the work of the F/P/T Advisory Network on Mental Health, are incorporated in the federal, provincial and territorial reporting of comparable indicators on health status, health outcomes and quality of services called for in the 2003 First Ministers’ Accord on Health Care Renewal. 10. The federal, provincial and territorial governments establish resource targets based on national standards for access to services and minimum wait times to determine and commit to sustainable funding levels. 11. That the Health Council of Canada report on the performance of the mental health, mental illness and addiction system. CONCLUSION The CMA welcomes the spotlight that the Committee has shone on the mental health, mental illness and addiction system in Canada and has been pleased to provide input on behalf of the physicians of Canada. The neglect of those impacted by mental illness and addiction must not be allowed to continue. It is unconscionable that millions of Canadians do not have access to the programs, treatments or supports that would ease their suffering. The federal government must recognize its responsibility towards these Canadians, embrace its leadership role and ensure that the mental health, mental illness and addiction system is placed on an equal footing within the health care system in Canada. Physicians are an integral part of the mental health, mental illness and addiction field. We are eager to work with governments and other concerned stakeholders to bring to fruition a national mental health strategy with mental health goals and an associated action plan that can effectively address the concerns of today and prepare the mental health, mental illness and addiction system for the future. CMA recommendations on Mental Health, Mental Illness and Addiction 1. That the federal government create and adequately resource a Centre for Mental Health within Health Canada led by an Associate Deputy Minister with a mandate to initiate and coordinate activity across all federal departments to address the federal government’s responsibilities to specific populations under its direct jurisdiction, to oversee national policies and programs that impact on mental health, mental illness and addiction, and to support intergovernmental collaboration. 2. That the federal government re-establish and adequately resource the F/P/T Advisory Network on Mental Health with a broader mandate to encompass mental health, mental illness and addiction. 3. That the federal government work with the provinces, territories and the Canadian Alliance on Mental Illness and Mental Health to establish a Pan Canadian Mental Health, Mental Illness and Addiction Network to develop a national mental health strategy, mental health goals and action plan; and serve as a forum for inter-provincial cooperation and collaboration on mental health, mental illness and addiction. 4. That the federal government, through the Institute of Neurosciences, Mental Health and Addiction, undertake a program of surveillance and research to determine actual availability of services for mental health, mental illness and addiction across the country. 5. That the federal government in consultation with provincial and territorial governments, health care providers and patients/clients establish national standards and targets for access to services. 6. That the Institute of Neurosciences, Mental Health and Addiction and the Institute of Health Services and Policy Research within Canadian Institutes of Health Research establish a joint competition for research on ways of integrating the delivery of mental health services between institutions and community settings. 7. That the federal government undertakes an evaluation of those Health Transition Fund and Primary Health Care Transition Fund projects in the mental health, mental illness and addiction field to determine the feasibility and scalability of collaborative care initiatives. 8. That the federal government works with the provinces and territories to develop a health human resource strategy for the field of mental health, mental illness and addiction. 9. That performance indicators for mental health services and support, based on the work of the F/P/T Advisory Network on Mental Health, are incorporated in the federal, provincial and territorial reporting of comparable indicators on health status, health outcomes and quality of services called for in the 2003 First Ministers’ Accord on Health Care Renewal. 10. The federal, provincial and territorial governments establish resource targets based on national standards for access to services and minimum wait times to determine and commit to sustainable funding levels. 11. That the Health Council of Canada report on the performance of the mental health, mental illness and addiction system. 1 Stephens T and Joubert N, The Economic Burden of Mental Health Problems in Canada, Chronic Disease in Canada, 2001:22 (1) 18-23. 2 Health Canada. A Report on Mental Illnesses in Canada. Ottawa, Canada 2002. 3 Health Care Access and Canadians, Ipsos-Reid for the CMA, 2004. 4 2004 National Report Card on the Sustainability of Health Care, Ipsos-Reid for the CMA, 2004. 5 Hospital Waiting Lists in Canada (13th edition), Critical Issues Bulletin, The Fraser Institute, October 2003. 6 National Physician Survey, Canadian Medical Association, Royal College of Physicians and Surgeons of Canada, College of Family Physicians of Canada, 2004, (http://www.cfpc.ca/nps/English/home.asp), accessed April 6, 2005. 7 Better Access Better Health: Accessible, Available and Sustainable Health Care For Patients, CMA September 2004 , attached as Appendix I.
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A Prescription for Productivity: Toward a more efficient, equitable and effective health system : CMA’s 2005 Pre-Budget Submission to the Standing Committee on Finance

https://policybase.cma.ca/en/permalink/policy1946
Last Reviewed
2013-03-02
Date
2005-10-24
Topics
Health systems, system funding and performance
  2 documents  
Policy Type
Parliamentary submission
Last Reviewed
2013-03-02
Date
2005-10-24
Topics
Health systems, system funding and performance
Text
Introduction This pre-budget submission makes the case that healthier Canadians are more productive Canadians. It also recognizes that the delivery of quality health care, in a timely manner, is paramount and is not mutually exclusive to any productivity agenda. As Emerson once said, “the first wealth is health.” 1 Last fall, the First Ministers recognized this by agreeing on a plan that will, over the next 10-years, add an additional $41 billion federal dollars into our health care system. The Canadian Medical Association applauds the government for spearheading this renaissance in federal health care funding. But like the human body, that is always evolving, the health care system needs to be monitored and trained for optimal performance. The consequences of under investing in health care in the past are haunting us today. Better health … better Canada Canada, which at one time was the most attractive place on earth to live, is falling behind. According to the Conference Board of Canada, Canada’s overall economic performance has fallen from 3rd best in the world, to 6th and now to 12th. One of the drivers of this precipitous fall is – according to the Conference Board’s analysis – the weakened state of our health care system. For example, our infant mortality rates are rising, not falling, in relative terms. We have tumbled from our top-five ranking in the 1980s — to where we are today in the 22nd spot out of 27 countries of the Organization for Economic Co-operation and Development (OECD). That is why, now more than ever, Canada’s economy is in need of strategic federal direct investments in health care as part of an overall productivity enhancing package. The CMA is not alone in linking health care investments to better economic performance. According to the latest economic research, “There is now strong empirical evidence to suggest a two-way relationship: improved health significantly enhances economic productivity and growth. 2 ” Furthermore, the Royal Institute of International Affairs states that, “…improved health supports labour productivity; by augmenting life expectancy, it encourages savings and private investment. Health expenditures are an investment not a cost. It is crucial that governments develop a long-term perspective.” The health care sector in Canada employs over a million people or 7.5% of the labour force. In 2004, Canada invested $130 billion in health care representing 10% of our GDP. The benefits of the health care investments not only accrue to a higher quality of life for all Canadians, but the economic multiplier effect of the initial investment is estimated to create an additional $65 billion in economic activity. 3 The CMA has identified a number of key issues related to health human resources and infrastructure that require immediate attention if the Canadian economy is to retain its competitive position in the global economy. We will make the case that, by making strategic federal direct investments in health human resources and public health, the federal government can make a great leap forward in reinforcing a critical foundation for a healthier more productive Canadian economy. These initiatives involve investments in physical, human and entrepreneurial capital, which if sustained over the long-term, will pay dividends in terms of improved population health. The competition for world class health care labour is becoming more global and will intensify. Unless Canada can provide excellent training, tools and working conditions international demand threatens to undermine the foundations of our system. For example, if Canada were to move today to cap working hours on physicians to 48 hours per week as the European Union has done, Canada would be short a whopping 12,780 physicians. Not only is there international demand for world class medical professionals, but also the stock of these professionals especially in Canada is aging. The United States is expected to be short by 200,000 physicians by 2020. They have looked to Canada before to fill the gap, and they may again. This is why the federal government must play a leadership role in supporting health human resources (HHR) while at the same time sustaining Canadian health care industries. When investments in health are aligned with technology at the right time, they can, as Federal Reserve Chairman Allan Greenspan suggests, “provide key insights into clinical best practices and substantially reduce administrative costs.” One of the key health infrastructure investments that has to be made is the electronic medical record (EMR). For too long Canada has lagged all major industrialized countries in adopting an EMR. A pan-Canadian EMR would deliver higher quality care, faster and at a higher value. An EMR would also allow Canada’s health care system to dramatically increase communication between jurisdictions. Communication and coordination of resources are keys to dealing with natural disasters such as Hurricane Katrina which devastated New Orleans. We need these investments sooner rather than later to avoid making the mistakes (e.g. in the case of SARS) as pointed out by the Naylor Report 4 . One of the key areas where the federal government can make a difference is the creation of a secure communications network linking up public health authorities and health providers across the country. According to Dr. Klaus Stöhr, project leader of the Global Pandemic Project at the World Health Organization, “Once a pandemic virus emerges, it is too late to begin planning or to begin collaboration.” 5 In spite of the imminent threat of a pandemic influenza, there are $34.3 millions in planned cuts to the Public Health Agency of Canada, over the next two years, as a result of program review. We need only look as far as New Orleans to see what an under-funded federal emergency preparedness system can reap. The loss of life in New Orleans was tragic and many agree unnecessary. In Canada we had SARS. Canada did squelch SARS and learned a lot about our capacities, yet we still have not lived up to the potential of being better prepared. Looking ahead, “In the event of a pandemic, the economic effects could be severe, affecting virtually all sectors and regions,” according to Dr. Sherry Cooper Chief Economist, BMO Nesbitt Burns. Dr. Cooper goes on to say that “Awareness is key to preparedness and proper surveillance, planning and preparation are essential to effective response and containment.” 6 Over the last several years, the CMA raised serious concerns about the ability of Canada’s public health system to respond to disasters and made a number of recommendations to address national preparedness in terms of security, health and capacity of the system. The CMA firmly believes that there remain significant shortcomings in our capacity to respond to health care emergencies. As we look to the future it is critical that the federal government make a stronger commitment to public health. Public health programming is too important to be sacrificed in the short-term expenditure review exercises. The continued application of the GST on physician practices is an unfair tax on health. Because physicians cannot recapture the GST paid on goods and services for their practices in the same way most other businesses can, the GST distorts resource allocation for the provision of medical care. As a result, physicians end up investing less than they otherwise could on goods and services that could improve patient care and enhance health care productivity such as information management and information technology systems. Zero-rating the GST on physician practices would remove an unfair tax on health and allow for greater investment in technologies that would result in better care. Summary The CMA’s pre-budget submission has presented the facts on how investments in physical, human and entrepreneurial capital can enhance our health care system and, in turn, make our economy more productive. As our health care system efficiencies improve, the benefits not only accrue to health care workers, but also the ultimate dividend is better patient care and improved population health. Improvements in the quality of care, and especially speed of care, enable the Canadian labour force to increase its performance and fully reach its potential. These health care investments ultimately translate into a stronger, more competitive and more productive economy. CMA’s 10 point productivity plan (with estimated investment) Efficiency Recommendation #1: That Health Canada, in collaboration with Citizenship and Immigration Canada, provincial and territorial governments and Canada’s medical schools, provide funding for 600 postgraduate training positions to enable qualified international medical graduates who are Canadian citizens or landed immigrants to complete medical training requirements. Investment: $45 million per year for 3 years. [600 x $75k (approximate annual training cost per resident]. Recommendation #2: That Health Canada, in collaboration with Foreign Affairs Canada and provincial and territorial governments, carry out a direct ad campaign in the United States to encourage expatriate Canadian physicians and other health professionals to return to practice in Canada. Investment: A one-time investment of $10 million. Recommendation #3: That the Minister of Finance in collaboration with the Minister of Health allocate $1 billion over 5 years to a Health Human Resource Reinvestment Fund. This fund would be used to implement a needs-based, pan-Canadian, integrated health human resources plan based on the principle of self-sufficiency for Canada. Investment: $1 billion over 5 years. Recommendation #4: That Health Canada, in collaboration with the Department of Human Resources and Skills Development and the provincial and territorial governments, create the Canadian Coordinating Office for Health Human Resources to facilitate pan-Canadian planning of health human resource needs. Investment: $3 million per year. Equity Recommendation #5: That the Minister of Finance introduces legislation to amend the federal Excise Tax Act to zero-rate the Goods and Services Tax (GST) on physician practices. Investment: $84 million per year or 0.27 % of total $31.5 billion GST revenues in 2005/06. Recommendation #6 That the Minister of Finance in collaboration with the Minister of Health provide additional financial support to Canada Health Infoway, to realize the vision of a secure interoperable pan-Canadian electronic medical record, with a targeted investment toward physician office automation. Investment: $1.5 billion over 10 years. Recommendation #7: That the Department of Human Resources and Skills Development introduce changes to the Canada Student Loans Program to extend the interest free status on Canada student loans for medical residents pursuing postgraduate training. Investment: $5 million per year. Recommendation #8: That the Minister of Finance in collaboration with the Minister of Health increase the base budget of the Canadian Institutes of Health Research to enhance research efforts in the area of population health and public health as well as significantly accelerating the pace of knowledge transfer. Investment: $600 million over 3 years. Effectiveness Recommendation #9: In order to ensure that adequate emergency preparedness and public health capacity is built at both federal and provincial levels, the federal government should provide sustained additional funding, to the Public Health Agency of Canada, and exempt it from expenditure review contributions. Investment: $684.3 million over 3 years (details in Appendix 1). Recommendation #10: That Health Canada and the Public Health Agency of Canada provide a one-time infusion of $100 million, to improve technical capacity to communicate with front-line public health providers in real-time during health emergencies. Investment: A one time investment of $ 100 million. The first wealth is health Canada, which at one time was the most attractive place on Earth to live, is falling behind. According to the Conference Board of Canada, Canada’s overall economic performance has fallen from 3rd best in the world, to 6th and now to 12th. One of the drivers of this precipitous fall is – according to the Conference Board’s analysis – the weakened state of our health care system. For example, our infant mortality rates are rising, not falling, in relative and absolute terms. We have tumbled from our top-five ranking in the 1980s — to where we are today; in the 22nd spot out of 27 OECD countries. That is why, now more than ever, Canada’s economy is in need of strategic federal direct investments in health care as part of an overall productivity enhancing package. According to the latest economic research, “There is now strong empirical evidence to suggest a two-way relationship: improved health significantly enhances economic productivity and growth. 7 ” The health care sector in Canada employs over a million people or 7.5% of the labour force. In 2004, Canada invested $130 billion in health care, representing 10% of our GDP. The benefits of the health care investments not only accrue to a higher quality of life for all Canadians, but the economic multiplier effect of the initial investment is estimated to create an additional $65 billion in economic activity. 8 I. Efficiency – providing tools to improve patient care and productivity A healthy and productive health workforce is the key to a well performing health care system and sets the foundation for a productive labour force. That is the ideal. However, there is a shortage of physicians across Canada. This shortage is creating a tremendous amount of pressure on the health care system. As demand for health care increases and the supply of health care workers is fixed, the pressure on these workers to do “more with less” is enormous. That is why Canadian physicians need the federal government’s support to have the tools and time to build on their productivity. Making human capital investments in physicians (value centres) Federal Health Minister Ujjal Dosanjh acknowledged the value of physicians in his speech to the Canadian Medical Association’s General Council this August 2005 by saying, “I want you to know that our government sees physicians … not as cost centres but as value centres”. It is in this spirit that we urge the government to invest in HHR. In order for the First Ministers Meeting (FMM) Agreement to be successful in improving access to care, governments must make the health workforce a major priority. In particular, the $1 billion in HHR funding in the Wait Times Reduction Fund should be made available immediately to address the crisis in health human resources rather than in the last 4 years of the 10-year agreement as currently projected. Given the current shortages in health human resources, action on HHR must begin now — not in 2010. Investing in physicians, or as Minister Dosanjh eloquently put, “value centres” will have real dividends for Canadians and the health care system. Accordingly, the CMA calls upon the federal government to play a key role in improving the availability of health human resources by developing a pan-Canadian HHR strategy that includes the involvement of health care providers. 9 For as Minister Dosanjh acknowledged, "It is clear to me that, if we are going to achieve the kind of solutions that have the support of Canadians, that our physicians must be engaged as active and valued partners.” The cost of under-investing in health human resources The pressures on human capital within the health care system are clear. Since the cutbacks in medical school admissions in the early 1990s, the gap between the growing demand for medical care and physician supply has widened. Canada’s ratio of 2.1 physicians per 1,000 population remains one of the lowest among the Organization for Economic Co-operation and Development (OECD) countries and below the OECD average of 2.9. With this ratio, Canada ranks 24th out of 30 OECD countries. In addition, as more doctors enter retirement age the shortage of physicians is becoming acute. The cost to patients — and their employers — is manifested in wait times, increasing difficulty to access primary care. In spite of these pressures Canada still does not educate enough doctors to replace those about to retire. The status quo threatens capital stock within the health sector, the general labour force, and even the world. “In the face of a global shortage of health care workers … can a country in which 24% of practicing doctors were educated outside its own borders continue to rely on physicians from countries that can least afford to lose them?” — Dr. Peter Barrett, CMA past president, August 2005 CMA annual meeting. Social and economic dividends of investing in HHR The CMA recommends that Canada’s long-term objective should be to increase enrolments in health disciplines to achieve greater self-sufficiency. The dividend of investing in HHR is a better, more efficient health care workforce who will deliver higher quality care in a timely manner. A well funded public health care system makes all Canadians healthier and more productive in their economic and social roles. In addition, becoming HHR self-sufficient also has the potential benefit of eventually exporting made-in-Canada health sector goods and services. But beyond re-stocking the pool of HHR for the future, attention also needs to be paid to the current stock of physicians. The issue of retention, or keeping physicians interested in working, is especially important now considering that a record number of physicians are about to retire. (i) Maximizing our existing health human capital — providing more training opportunities for international medical graduates As noted earlier, Canada ranks at the bottom among OECD countries in physicians per capita. As blunt an indicator as this may be the recent Supreme Court ruling in the Zeliotis case is a poignant reminder that there is an imbalance in the system between supply (HHR) and demand. We need more health care workers to protect, or save from burnout, the health care human capital investments that Canada has made already. We also need to ensure that Canada’s labour force — our macro human capital — has access to quality care without reasonable delays. Since it takes anywhere from 7 to 10 years to train a new physician, there are limits to how much can be done in the short term to address shortages. One short-term response would be to facilitate the training of qualified international medical graduates (IMGs) who are already in Canada. The CMA has welcomed the federal government’s recent investment of $75 million in the 2005 budget for the integration of internationally trained health workers, and notes that federal funding has already produced tangible results as some medical schools have increased the number of postgraduate training positions available to IMGs. However, there is an issue of clinical training capacity at Canada’s medical schools; consequently this initial investment is insufficient to provide training opportunities for over 600 IMGs and countless other qualified internationally trained health workers who are already in Canada. Accordingly, the CMA recommends that the federal government provide sufficient funding to provide additional training positions to train the existing supply of IMGs who would be eligible to begin a post-MD residency training immediately. The capacity to train these Canadian citizens or landed immigrants exists in Canadian medical schools. Currently, Canadian medical schools are providing postgraduate training opportunities to close to 900 visa trainees from abroad, largely from Persian Gulf countries. The federal government helps redeploy some of this capacity by offering medical schools, on a time-limited basis, to purchase some of these visa trainee positions to train IMGs that can then be deployed in Canada’s health care system. Such funding could also provide for the comprehensive assessments of IMGs that have been developed in several jurisdictions. The CMA also strongly supports the initiative of the Medical Council of Canada (MCC) in developing a pilot for the off-shore electronic administration of the MCC’s evaluation exams. Recommendation #1: That Health Canada, in collaboration with Citizenship and Immigration Canada, provincial and territorial governments and Canada’s medical schools, provide funding for 600 postgraduate training positions to enable qualified international medical graduates who are Canadian citizens or landed immigrants to complete medical training requirements. Investment: $45 million per year for 3 years. [600 x $75k (approximate annual training cost per resident]. (ii) Repatriating human capital - getting our Canadian physicians back home from the US Canada has been a net exporter of physicians to the United States for a generation. As government funding for health care fell in the 1990s exports of Canadian physicians to the US rose. Last year was the first year in which Canada gained more physicians than it sent to the US. There is a window of opportunity to repatriate Canadian physicians from the United States. The quality of Canadian life, competitive remuneration packages and a practice commitment that is characterized by greater physician autonomy are many of the chief drawing points for such a campaign. As the Canadian dollar approaches US $0.90 advertising in the US has also become much more affordable. Recommendation #2: That Health Canada, in collaboration with Foreign Affairs Canada and provincial and territorial governments, carry out a direct ad campaign in the United States to encourage expatriate Canadian physicians and other health professionals to return to practice in Canada. Investment: A one-time investment of $10 million. (iii) Diligence on HHR As Canada’s population ages and as health care technology improves, demand for health care will increase. Health care in economic terms is a superior good: as the population’s standard of living improves, so does the demand for superior goods. But will this increased demand be met with an adequate supply of physicians to provide the kind of care Canadians need in a timely manner? Not likely, but we don’t know for sure because Canada does not currently have a way to assess the ability of our medical schools to meet these future needs across the country. An inadequate physician supply has important implications for human, physical and entrepreneurial capital in Canada’s economy. If the physician supply is not properly aligned with the demographic needs of the population the result is a loss (calculations vary and depend on the individual) in potential human capital as patients postpone treatment or wait too long for treatment. Investments in future physical capital investments may also be misallocated or not made at all if the proper health human resources are not in place. In addition, entrepreneurial capital may also very well flow to places where the optimal health human resources are in place. Why we need a Health Human Resources Reinvestment fund Canada lags behind other countries in the education and training of physicians. For example, as of 2002-2003 there were 12.2 first-year medical school places per 100,000 population in England compared with only 6.5 per 100,000 in Canada. It should be added that the United Kingdom has aggressively expanded medical enrolment since the late 1990s by opening 4 new medical schools and increasing medical school intake by some 2,300 places (60%) between 1997 and 2004. The CMA and other major national medical organizations have called on governments to increase medical school capacity to 3,000 first-year training positions per year in order to stabilize Canada’s physician supply. With recent increases in positions at a number of medical schools, current indications suggest that we have reached about 2,300 positions per year. However, given the growing demand for health services and changing patterns of medical practice, it is likely that medical school capacity will have to be increased much more significantly. For example, if Canada were to move today to cap working hours on physicians to 48 hours per week as the European Union has done, Canada would be short a whopping 12,780 physicians. Accordingly, as was done in the 1960s when the federal government introduced the Health Resources Fund, the CMA urges the federal government to create a Health Human Resource Reinvestment Fund in order to implement a needs-based, pan-Canadian, integrated health human resources plan based on the principle of self-sufficiency for Canada. Recommendation #3: That the Minister of Finance in collaboration with the Minister of Health allocate $1 billion over 5 years to a Health Human Resource Reinvestment Fund. This fund would be used to implement a needs-based, pan-Canadian, integrated health human resources plan based on the principle of self-sufficiency for Canada. Investment: $1 billion over 5 years. (iv) Creation of the Canadian Coordinating Office for Health Human Resources At a broader level, there is also a need for continued coordination of pan-Canadian HHR needs for today and the future. Governments are investing very large sums of funding in health care without having the benefit of a national long-term health human resources strategy. Since health human resources are increasingly mobile in the global economy, it is essential that Canada’s 14 provincial, territorial and federal health care systems devise a coordinated approach to training, recruiting and retaining health human resources. The Canadian Coordinating Office for Health Human Resources would be modeled along the same lines as the Canadian Coordinating Office for Health Technology Assessment (CCOHTA) created in 1989. Presently, there is no overall national coordinating body to assist provinces and territories in the planning of health human resources, particularly one that includes all pertinent stakeholders including physicians and other health care professionals. Building on previous federal investments in health sector studies across a number of health disciplines, the CMA urges the federal government to establish a Canadian Coordinating Office for Health Human Resources involving representation from health care professions — something both the Romanow and Senator Kirby reports recommended. Recommendation #4: That Health Canada, in collaboration with the Department of Human Resources and Skills Development and the provincial and territorial governments, create the Canadian Coordinating Office for Health Human Resources to facilitate pan-Canadian planning of health human resource needs. Investment: $3 million per year. II. Equity: improving health infrastructure and technology to provide better care (v) Freeing-up entrepreneurial capital and retaining physicians Why the GST should not apply to physician practices The CMA is calling on the federal government to remove an insidious tax on health by zero-rating (10 ) the GST on physician practices. The introduction of the GST was never intended to fall onto the human and physical capital used to produce goods and services. The GST is a value-added tax on consumption that was put into place to remove the distorting impact that the federal manufacturers sales tax was having on business decisions. However, the GST was applied to physician practices in a way that does exactly the opposite. The federal government must rectify the situation once and for all. Based on estimates by KPMG, physicians have paid $1.1 billion in GST related to their medical practice. This is $1.1 billion that could have been invested in better technology to increase care and productivity. Re-investing the zero-rating of the GST for physician practices Zero-rating the GST would initially cost the federal government $84 million (11) or 0.27% of total GST revenues for 2005/06. However, as physicians across Canada re-invest the zero-rated GST tax back into their practices — and especially in their patients — there would be considerable dividend back to the federal government in terms of healthier Canadians and a more efficient economy. Zero-rating the GST for physician practices is about properly calibrating the tax system with the health care delivery system, in order to help meet our national health and economic goals. Dispelling the myth of a GST precedent Some bureaucrats and politicians believe that zero-rating the GST for physician practices may set a precedent. In fact, the precedent has already been set: significant elements of publicly-funded health care are already zero-rated or qualify for a rebate on GST. For example, prescription drugs, a significant and growing driver of total health care costs, have been zero-rated since 1996. Hospitals have benefited from an 83% rebate since the inception of the GST, and the 2005 budget extended the reach of this rebate to not-for-profit organizations delivering services that were previously delivered in the hospital setting. In addition to hospitals, rebates have been extended to other public and para-public sectors such as municipalities, universities and schools (the so-called “MUSH” sector). The 2004 federal budget confirmed that municipalities would be able to recover 100% of the GST and the federal component of the harmonized sales tax (HST) immediately. Recommendation #5: That the Minister of Finance introduces legislation to amend the federal Excise Tax Act to zero-rate the Goods and Services Tax (GST) on physician practices. Investment: $84 million per year or 0.27 % of total $31.5 billion GST revenues in 2005/06. (vi) Electronic Medical Record — increasing health and productivity In the words of Finance Minister Goodale, “Top-notch physical infrastructure is essential to a successful economy and a rising quality of life.” To be sure, Canada needs better highways, bridges and sewer systems. We need this basic infrastructure to enjoy a basic quality of life. But we want more than a basic life. To achieve a higher quality of life and to ensure international competitiveness, Canada needs to invest in the infrastructure of the 21st century, this is e-infrastructure. A pan-Canadian Electronic Medical Record (EMR) would deliver higher quality care, faster and at higher value. An EMR will save lives and improve efficiencies When investments in health are aligned with technology at the right time, they can as Federal Reserve Chairman Allan Greenspan suggest, “provide key insights into clinical best practices and substantially reduce administrative costs.” Health care delivery in Canada is a $130 billion industry. It represents more than 10% of our country’s gross domestic product. And it continues to grow. Yet we are managing the system with technology that would have been unacceptable to the banking industry even 20 years ago. Studies show (12) that the sooner we have a pan-Canadian EMR in place, the sooner the quality of health care will improve. For too long Canada has lagged all major industrialized countries in adopting an EMR (see Table 2). [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Table 2 Canada has fallen behind in EMR investments Percent of physicians using electronic records and prescriptions Country Records Prescriptions Britain 59% 87% New Zealand 52% 52% Australia 25% 44% United States 17% 9% Canada 14% 8% Harris Interactive Survey (2001) conducted for Harvard School of Public Health and the Commonwealth Fund's International Health Care Symposium. [TABLE END] An adequate health information infrastructure with pan-Canadian connectivity With an initial investment of $1.2 billion, Canada Health Infoway (CHI) has been working with provincial and territorial governments to put in place key components of a pan-Canadian health information infrastructure. While significant investments have been made in provincial and territorial health information systems, two key concerns have emerged. First, the $1.2 billion investment in CHI, while significant, is only 15% of the estimated cost of implementing a fully interoperable electronic medical record system in Canada. Second, CHI has made very limited progress in building a common, secure and interoperable platform - the backbone of a pan-Canadian system. Accordingly the CMA endorses the recommendations put forward by the Association of Canadian Academic Healthcare Organizations (ACAHO), the Canadian Nurses Association and the Canadian Healthcare Association to provide CHI with significant funding so that it may fulfill its core mission. Empowering investments in e-entrepreneurship for better health One of the gaps in the pan-Canadian EMR is the lack of attention paid to health information infrastructure on the front lines of health care delivery. While medical services across the country are largely publicly – funded, most physicians run their own practices. As entrepreneurs doctors take on the responsibility and risk of investing in new capital equipment from diagnostics to EMRs. Like any other business, doctors must calculate the return on investment for any capital equipment that they buy. In the case of the EMR, most of the return benefits the government, according to a Center for Information Technology Leadership in the United States 13 . A physical capital investment in an EMR improves care and deepens entrepreneurial capital By making all relevant patient information immediately available at the time of any encounter, and by providing equally rapid access to general medical information that assists in clinical decision-making, an EMR significantly enhances a clinician's ability to make good decisions, which will reduce medical errors and their associated costs. The timeliness of information also means that diagnoses are made more quickly, which significantly reduces the amount of time that patients need to spend using costly hospital beds or emergency room resources. Further cost reductions come from diminished duplication: all too often, time is lost and money is spent repeating diagnostic tests that were recently done but whose results are unavailable. Recovery of health information technology investments is almost immediate A Booz, Allan, Hamilton study on the Canadian health care system estimates that the benefits of an EMR could provide annual system-wide savings of $6.1 billion, due to a reduction in duplicate testing, transcription savings, fewer chart pulls and filing time, reduction in office supplies and reduced expenditures due to fewer adverse drug reactions. The study went on to state that the benefits to health care outcomes would equal or surpass these annual savings. Mobilizing physicians to operationalize a pan-Canadian EMR The physician community can play a pivotal role in helping the federal governments make a connected health care system a realizable goal in the years to come. Through a multi stakeholder process encompassing the entire health care team, the CMA will work toward achieving cooperation and buy-in. This will require a true partnership between provincial medical associations, provincial and territorial governments and CHI. The CMA is urging the federal government to allocate an additional investment of $1.5 billion to Canada Health Infoway. Criteria would be set for the fund that would restrict investment to automating physician offices through an agreement between the medical division and the appropriate province or territory. The $1.5 billion federal investment would be leveraged on the basis of a 75:25 sharing with physicians to generate $1.5 billion in physician office automation investment over the next 10 years. Specific modalities of disbursements of these funds would be set up by agreements with the provincial medical associations. CHI already has stringent financial controls and processes in place and can extend them to manage this program. Recommendation #6: That the Minister of Finance in collaboration with the Minister of Health provides additional financial support to Canada Health Infoway, to realize the vision of a secure interoperable pan-Canadian electronic medical record, with a targeted investment toward physician office automation. Investment: $1.5 billion over 10 years. (vii) Alleviating medical resident debt ? extend the interest relief on Canada student loans for medical residents Medical students are accumulating unprecedented levels of debt as tuition fees for medical school continue to sky rocket. The increase in debt influences the kind of practice young physicians pursue as well as where they practice. The Canadian Medical Association commends the federal government for its commitment to reduce the financial burden on students in health care professions as announced in the 2004 FMM Agreement and encourages it to act on this promise by extending the interest relief on Canada student loans for medical residents. Extending the interest relief on Canada student loans for medical residents would avoid distorting medical students’ career choices and encourage new graduates to stay in Canada. Deregulation of tuition => increased debt burden => drag on entrepreneurship It wasn’t always this way. The deregulation of medical school tuition fees in some provinces dramatically increased the debt burden of medical students. It is important to note that medical residents are in a unique situation not faced by other students who graduate from university programs. Once students graduate from medical school, they earn the right to be called physicians. However, they cannot practice until they complete a residency program. The program, which takes between 2-10 years to complete, certifies them as a specialist in a number of disciplines ranging from family medicine to radiology to rheumatology. During the compulsory residency program they must act as both student and employee. Table 1 includes the annual salary of medical residents and fellow hospital employees. Medical residents are not paid by the hour; otherwise their wages would be higher as there is no limit on the hours (80+) they work. [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Table 1. Medical residents learn a lot but don’t earn a lot Resident stipend versus fully qualified health care employees Status, Ottawa, Ontario Annual Stipend or Fulltime Salary (as applicable) Minimum Postsecondary Education Requirement Minimum Related Experience Requirement Ontario Resident, PGY-1 (national average is $42,862) $ 44,230 7 + years 7+ years related clinical and other experience acquired through undergraduate medical education and pre-professional experiences, including clerkships, electives, etc. Locksmith/Door Mechanic, Ottawa Hospital $44,051 None. High school diploma required and a course or certificate in locksmithing 5-years relevant experience Supervisor of Housekeeping, Ottawa Hospital $ 41,165 - $48,000 2 years OR certified member of the OHHA CAHA, or related 3-years general supervisory experience [TABLE END] The Cost of under-investing in medical residents hits rural Canada hard As medical debt increases more physicians are choosing to go into some specialties (remunerated at a much higher rate) as opposed to family medicine. This has an impact on the accessibility, quality and overall cost of the health care system. Family practitioners are on the front-lines of medical care, and they treat and prevent millions of illnesses across Canada every year. The fall in demand for family practice in general, and rural family practice in particular, is now having a significant impact on health care and economic performance. The lack of a local family physician is often a determining factor in a company’s decision to make a direct investment in a community. For example, a multi-national company would likely not invest in a multi-billion dollar ski hill if there were no doctors available to treat ski related accidents. Improving access to medical education Canada’s future depends on ensuring that all Canadians have access to our medical schools. This sentiment was recently echoed by Finance Minister Ralph Goodale, “...but such skills are still confined to a minority of our population. We must do better. Canada’s future depends upon it.” Extending the interest-free status on Canada student loans would be an important signal to young Canadians from all socio-economic backgrounds that want to become a doctor. Drawing from a smaller portion of the population limits the experience and variety of community contact. Specific knowledge of a patient group allows a future physician adapt their care for that group. Thus, we should be graduating residents from all across the country from diverse socio-economic backgrounds. This is not unlike an entrepreneur who by tailoring services to a clients need that were previously unmet delivers better service and captures market share. Recommendation #7: That the Department of Human Resources and Skills Development introduce changes to the Canada Student Loans Program to extend the interest free status on Canada student loans for medical residents pursuing postgraduate training. Investment: $5 million per year. (viii) Making medical research investments count – supporting knowledge transfer The Canada Institutes of Health Research (CIHR) was created to be Canada's premier health research funding agency. One of the most successful aspects of the CIHR is its promotion of inter-disciplinary research across the four pillars of biomedical, clinical, health systems and services as well as population health. This has made Canada a world leader in new ways of conducting health research. However, with its current level of funding, Canada is significantly lagging other industrialized countries in its commitment to health research. Knowledge transfer is one of the areas where additional resources would be most usefully invested. Knowledge Translation (KT), a prominent and innovative feature of the CIHR mandate, has the potential to: * Significantly increase and accelerate the benefits flowing to Canadians from their investments in health research; and  * Establish Canada as an innovative and authoritative contributor to health-related knowledge translation. Population and public health research is another area where increased funding commitments would yield long-term dividends. For example, “Researchers (and research funders) should create more opportunities for interactions with the potential users of their research. They should consider such activities as part of the 'real' world of research, not a superfluous add-on.”(Lavis et al., 2001) 14 Recommendation #8: That the Minister of Finance in collaboration with the Minister of Health increase the base budget of the Canadian Institutes of Health Research to enhance research efforts in the area of population health and public health as well as significantly accelerating the pace of knowledge transfer. Investment: $600 million over 3 years. III. Effective - an ounce of prevention is worth a pound of cure A little preparation before a crisis occurs is preferable to a lot of fixing up afterward. According to the World Health Organization and the Public Health Agency of Canada (PHAC) an influenza pandemic is inevitable. The consequences of not being adequately prepared will result in more lost lives and a multi-billion dollar hole in our economy, as was the experience in Toronto as a result of SARS in 2003. Looking ahead, PHAC estimates that the impact of pandemic influenza in Canada, if vaccines are not available, is between 11,000 and 58,000 deaths and economic costs of $5 to $38 billion. (ix) Protecting our capital infrastructure through emergency preparedness When SARS hit Canada in the spring of 2003 people got very sick and died. There was public confusion that quickly spilled into the economy. Internal and external trade in Canada was disrupted. According to the Conference Board of Canada the economic impact of the outbreak of SARS in the Greater Toronto Area equaled $1.5 billion. Investments in public health and emergency preparedness will allow the system to function more effectively and alleviate the impact of novel infectious diseases. We have expert advice how to do it – the Naylor Report. Reduce the economic burden of pandemics — close the Naylor Gap The National Advisory Committee on SARS and Public Health (the Naylor Report) estimated that approximately $1 billion in annual funding is required to implement and sustain the public health programming that Canada requires. Although representing an important reinvestment in this country’s public health system, the funding announced in the 2005 budget falls well short of this basic requirement. Dr. Jeffrey Koplan 15 , the past Director of the US Centers for Disease Control and Prevention laid out 7 areas for building capacity and preparedness within a public health system: 1. A well trained, well staffed public health workforce. 2. Laboratory capacity to produce timely and accurate results for diagnosis and investigation. 3. Epidemiology and surveillance to rapidly detect health threats. 4. Secure accessible information systems to help analyze and interpret health data. 5. Solid communication to ensure a secure two-way flow of information. 6. Effective policy evaluation capability. 7. A preparedness and response capability that includes a response plan and testing and maintaining a high state of preparedness. These points apply for both the day-to-day functioning of the public health system and its ability to respond to threats whether it is a new infectious disease, a natural disaster or a terrorist attack. Public health must be ready for all such threats. It is crucial, that the federal government build and maintain its stockpile of supplies for emergency use, its public health laboratories for early detection, its capacity to rapidly train and inform front-line health workers of emerging threats, its ability to assist the provinces and territories, and coordinate provincial responses in the event of overwhelming or multiple simultaneous threats. Vaccination is the most cost-effective health intervention available When a pandemic hits Canada vaccinations are a key component in reducing the impact. According to the Centers for Disease Control and Prevention (CDC) vaccination against childhood diseases is one of the most cost effective health interventions available. For example the measles-mumps-rubella vaccination saves $16.34 in direct medical costs for every dollar spent. The CMA urges the federal government to continue to support the National Immunization Strategy and the consistent availability of National Advisory Committee on Immunization recommended vaccines in all provinces and territories. A clear role for federal leadership – protecting our future The idea that public health is a federal responsibility “is based on the premise that public health matters - particularly emergencies - are so important that the federal government should simply use its powers for ”peace, order and good government” to unilaterally direct how public health matters should be addressed, and to ensure they are fully addressed.” 16 Consequently, the CMA recommends the enactment of a Canada Emergency Health Measures Act that would consolidate and enhance existing legislation to allow for a more rapid national response in cooperation with the provinces and territories, based on a graduated systematic approach to emergencies that pose an acute an imminent threat to human health and safety across Canada. Regardless of how well prepared any municipality is, under certain circumstances public health officials will need to turn to the provincial, territorial or the federal government for help. The success of such a multi-jurisdictional approach is contingent upon good planning beforehand between the federal, provincial and territorial and local-level governments. There is an important role for the federal government to urgently improve the coordination among authorities and reduce the variability between various response plans in cooperation with provincial authorities. Public health investments take time Public health must be funded consistently in order to reap the full benefit of the initial investment. Investments in public health will produce healthier Canadians and a more productivity workforce for the Canadian economy. But this takes time. By the same token, neglect of the public health system will cost lives and hit the Canadian economy hard. As the federal government examines ways of achieving efficiencies and cost savings in federal programs through the Cabinet Committee on Expenditure Review it is critical that the Public Health Agency of Canada be protected from any cuts. Recommendation #9: In order to ensure that adequate emergency preparedness and public health capacity is built at both federal and provincial levels, the federal government should provide sustained additional funding, to the Public Health Agency of Canada, and exempt it from expenditure review contributions. Investment: $684.3 million over 3 years (details in Appendix 1). (x) Investments in effective public health communication are crucial The effectiveness of the public health system is dependent, in large part, on its capacity to communicate authoritative information in a timely way. A two-way flow of information between public health experts and the practicing community is necessary at all times. It becomes essential during emergency situations. The rapid, effective, accessible and linked (REAL) health communication and coordination initiative improves the ability of the public health system to communicate in a rapid fashion by: * Providing a focal point for inter-jurisdictional communication and coordination to improve preparedness in times of emergency. * Developing a seamless communication system leveraging formal and informal networks. * Researching the best way to disseminate emergency information and health alerts to targeted health professionals and public health officials in a rapid, effective and accessible fashion. Recommendation #10: That Health Canada and the Public Health Agency of Canada provide a one-time infusion of $100 million, to improve technical capacity to communicate with front-line public health providers in real-time during health emergencies. A one time investment of $100 million. Conclusion — the economic impact of investments in health care The CMA’s pre-budget submission has presented the facts on how investments in physical, human and entrepreneurial capital can enhance our health care system and, in turn, make our economy more productive. Improvements in the quality of care, and especially speed of care, enable the Canadian labour increase their performance and reach their potential. The 2004 First Minister Health Accord is a positive step in renewing the federal government’s commitment to publicly funded health care, more needs to be done. Like the human body, that is always evolving, the health care system needs to be calibrated for optimal performance. Targeted investments in health human resources as well as health care infrastructure will result in an optimal allocation of resources, better health and a stronger economy. Appendix 1 [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY]  CMA’s 10 point productivity plan    (in millions of dollars) 3-year 2006/07 2007/08 2008/09 Total   Efficiency i. Improving access -opening-up training positions for International Medical Graduates 45.0 45.0 45.0 135.0   ii. Repatriating our human capital -getting Canadian physicians home from the U.S. 10.0 0.0 0.0 10.0   iii. Health Human Resource Reinvestment Fund* 100.0 200.0 300.0 600.0   iv. Creating the Canadian Coordinating Office for Health Human Resources 3.0 3.1 3.2 9.3   Efficiency total 158.0 248.1 348.2 754.3   Equity v. Freeing-up entrepreneurial capital -zero-rating the GST on physician practices 84.0 86.1 88.3 258.4 vi. Investing in physical and human capital through physician office automation (CHI transfer)** 1,463.7 0.0 0.0 1,463.7   vii. Providing debt-relief to medical residents - an investment in human capital 5.0 5.1 5.3 15.4   viii. Making health research investments count -supporting knowledge transfer 100.0 200.0 300.0 600.0   Equity total 1,652.7 291.2 393.6 2,337.5   Effectiveness ix. Planning for the worst -pandemic preparation 25.0 25.0 25.0 75.0   Closing the Naylor Gap 75.0 150.0 250.0 475.0   Protection from expenditure review committee reductions*** 16.4 17.9 0.0 34.3   x. Ensuring effective public health communication 100.0 0.0 0.0 100.0   Effectiveness total 216.4 192.9 275.0 684.3   Total 2,027.1 732.2 1,016.8 3,776.1 * Note: additional 2 years of funding at $200 million per year. ** Note: the physician office automation financing plan is a 1-time transfer to Canada Health Infoway (CHI). CHI would deliver funding directly. Estimates are based on information from CHI (October 2005). *** Working Group on a Public Health Agency for Canada In Report: A Public Health Agency of Canada Ottawa: Public Health Agency of Canada; Apr 2004. Available: www.phac-aspc.gc.ca/rpp-2005-06/index.html#2b (accessed Oct 2005). [TABLE END] Appendix 2 10 year Costing of the Physician Automation [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] [TABLE END] 1. There are approximately 60,000 licensed physicians in Canada. It is estimated that 20% already have an Electronic Medical Record (EMR) in their clinical office. Therefore this costing analysis is to support the other 48,000 physicians to automate their offices. 2. The cost to automate an office is based on the work carried out by the Alberta government and the Alberta Medical Association through the Physician Office Support Program (POSP).They have used a four year cost of $41,000 which covers capital, installation, training and operational costs over the four years. First year costs are $26,000 with $5,000 over the remaining three years. References 1 Ralph Waldo Emerson (1803–1882), essayist, poet, philosopher. “Power,” The Conduct of Life (1860). 2 According to the Royal Institute of International Affairs who also quote two Nobel Laureates in Economics. In, Health Expenditure and Investment Rather than a Cost? International Economics Program, Chatham House. 07/05. Available: www.chathamhouse.org.uk/index.php?id=189&pid=245 (accessed Oct 2005). 3 The additional economic activity generated by the health care sector is based on a conservative 1.5 multiplier. The CMA is pursuing precise estimates of the benefits of health care investments in Canada. 4 Learning from SARS - Renewal of Public Health in Canada A report of the National Advisory Committee on SARS and Public Health. Ottawa: Health Canada; Oct 2003. Available: www.phac-aspc.gc.ca/publicat/sars-sras/naylor/(accessed October 2005) 5 5 Cooper S. Don’t fear fear or panic panic an economist’s view of pandemic flu Toronto: BMO Nesbitt Burns; October 2005. Avalable www2.bmo.com/news/article/0,1257,contentCode-5047_divId-4_langId-1_navCode-112,00.html 6 ibid 7 According to the Royal Institute of International Affairs who also quote two Nobel Laureates in Economics. In, Health Expenditure and Investment Rather than a Cost? International Economics Program, Chatham House. 07/05. Available: www.chathamhouse.org.uk/index.php?id=189&pid=245 (accessed Oct 2005). 8 The additional economic activity generated by the health care sector is based on a conservative 1.5 multiplier. The CMA is currently pursuing precise economic multiplier estimates of the benefits of health care investments in Canada. 9 The CMA and the Canadian Nurse Association go into greater depth concerning the pressures on a strategy for HHR in, “Planning Framework for Health Human Resources. A Green Paper. June 2005 Available: www.cna-nurses.ca/CNA/documents/ pdf/publications/CMA_CNA_Green_Paper_e.pdf. 10 Zero-rated supplies refer to a limited number of goods and services that are taxable at the rate of 0%. This means there is no GST/HST charged on the supply of these goods and services, but GST/HST registrants can claim an input tax credit (ITC) for the GST/HST they pay or owe on purchases and expenses made to provide them. Available: www.cra-arc.gc.ca/tax/business/topics/gst/glossary-e.html (accessed September 2005) 11 An independent study by KPMG estimated that physicians have “overcontributed” in terms of unclaimed ITCs by approximately $57.2 million in 1992. In 2005, this comes to an inflation adjusted figure of $84 million. 12 Booz, Allan, Hamilton Study, Pan-Canadian Electronic Health Record, Canada’s Health Infoway’s 10-Year Investment Strategy, March 2005-09-06 13 The Center for Information Technology Leadership (www.citl.org) is non-profit research organization established in 2002 to guide the health care community in making more informed strategic IT investment decisions. 14 Lavis, J., Ross, S., Hurley, J., Hohenadel, J., Stoddart, G., Woodward, C., Abelson, J. Reflections on the Role of Health-Services Research in Public Policy-Making. Paper 01-06. 15 Koplan JP. Building Infrastructure to Protect the Public’s Health. Public Health Training Network Broadcast Available: www.phppo.cdc.gov/documents/KoplanASTHO.pdf (accessed Oct 2005). 16 Report: A Public Health Agency for Canada Building a Foundation for Intergovernmental Harmony and Cooperation Available: www.phac-aspc.gc.ca/publicat/phawg-aspgt-noseworthy/2_e.html (accessed Oct 2005)
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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.
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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.
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