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CMA's Presentation to the House of Commons Standing Committee on Finance: Pre-budget Consultations 2010-2011

https://policybase.cma.ca/en/permalink/policy10018
Date
2010-10-27
Topics
Health systems, system funding and performance
Health human resources
  1 document  
Policy Type
Parliamentary submission
Date
2010-10-27
Topics
Health systems, system funding and performance
Health human resources
Text
The CMA brief contains seven recommendations to address pressing needs in the health care system. Before I get to those, I'd like to highlight why, from my perspective, our health care system is in need of the federal government's attention. Yesterday, at the Ottawa Hospital, where I am Chief of Staff: * Our occupancy was 100 per cent. * 30 patients who came to the emergency department were admitted to the hospital, but we had beds for only four of them. * 10 are still waiting on gurneys in examining rooms within the emergency department. * Six patients were admitted to wards and are receiving care in hallways. * Three surgeries were cancelled - bringing the number of cancellations this year to 480. * But while all this was happening, we had 158 patients waiting for a bed in a long-term-care facility. Equally, a few blocks from here and in communities across the country, the health status of our poorest and most vulnerable populations is comparable to countries that have a fraction of our GDP - despite very significant investments in their health. This is just my perspective. Health care providers of all types experience the failings of our system on a daily basis. We as a country can do better and Canadians deserve better value for their money. Canada's physicians are calling for transformative change to build a health care system based on the principles of accessibility, high quality, cost effectiveness, accountability and sustainability. Through new efficiencies, better integration and sound stewardship, governments can reposition health care as an economic driver, an agent of productivity and a competitive advantage for Canada in today's global marketplace. The Health Accord expires in March 2014, and we strongly urge that the federal government begin discussions now with the provinces and territories on how to transform our health care system so that it meets patients' needs and is sustainable into the future. Canadians themselves also need to be part of the conversation. To help position the system for this transformative change, the CMA brief identifies a number of issues that the federal government should address in the short term: First, our system needs investments in health human resources to retain and recruit more doctors and nurses. Although we welcome measures in the last budget to increase the number of residency positions, we urge the government to fulfill the balance of its election promise by further investing in residencies, and to invest in programs to repatriate Canadian-trained physicians living abroad. Second, we need to bolster our public health e-infrastructure so that it can provide efficient, quality care that responds more effectively to pandemics. We recommend increased investment: * to improve data collection and analysis between local public health authorities and primary care practices, * for local health emergency preparedness, and * for the creation of a pan-Canadian strategy for responding to potential health crises. Third, issues related to our aging population also call for action. As continuing care moves from hospitals into the home, the community, or long-term care facilities, the financial burden shifts from governments to individuals. We recommend that the federal government study options for pre-funding long-term care - including private insurance, tax-deferred and tax-prepaid savings approaches, and contribution-based social insurance - to help Canadians prepare for their future home care and long-term care needs. And, as much of the burden of continuing care for seniors also falls on informal, unpaid caregivers, the CMA recommends that pilot studies be undertaken to explore tax credit and/or direct compensation for informal caregivers for their work, and to expand programs for informal caregivers that provide guaranteed access to respite services in emergency situations. Finally, the government should increase RRSP limits and explore opportunities to provide pension vehicles for self-employed Canadians. Mr. Chair, a fuller set of recommendations is contained in our report -- Health Care Transformation in Canada: Change that Works. Care that Lasts. These include universal access to prescription drugs; greater use of health information technology; and the immediate construction of long-term care facilities. We urge the Committee to consider both our short-term recommendations - and our longer term vision for transforming Canada's health care system. I look forward to your questions. Thank you.
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CMA's Presentation to the Senate Standing Committee on National Finance: Bill C-9, An Act to implement certain provisions of the budget tabled in Parliament on March 4, 2010 and other measures

https://policybase.cma.ca/en/permalink/policy9833
Date
2010-06-22
Topics
Health systems, system funding and performance
  1 document  
Policy Type
Parliamentary submission
Date
2010-06-22
Topics
Health systems, system funding and performance
Text
Thank you Madame Chair and Committee members for the opportunity to speak to you today. As mentioned, I am Briane Scharfstein, Associate Secretary General at the Canadian Medical Association (CMA). I am a family physician by training and a member of the Ad Hoc Working Group on Medical Isotopes. The working group was created to advise the Minister of Health in 2008 when the first major sustained shutdown of the Chalk River occurred. When I agreed to join the group, I certainly didn't expect it to still be going over two years later. And, while I am a member of the working group, I want to be clear, that today I am speaking on behalf of the CMA and our more than 72,000 physician members across the country. My comments are a reflection of the Working Group's June 2008 Lessons Learned report and I regret to say that a good portion of our observations are still true today. I congratulate the Senate for looking specifically at the AECL proposals and for looking at implications for patients. While the CMA is not taking a specific position on the proposal in Bill C-9 for Atomic Energy Canada Ltd (AECL), in whole or in part, to be sold off to the private sector, we do believe that it is in the best interests of our patients that Canada remains a leader in the sector. As well, Canada's doctors strongly believe that the impact on individual patient care must be considered and factored into any decisions that might result in disruptions of the supply of medical isotopes. The CMA acknowledges that the federal budget did include $48 million over two years for research, development and application of medical isotopes and alternatives. Further, there was another allocation of $300 million on a cash basis for AECL's operations in 2010/11 to cover anticipated commercial losses and support the corporation's operations to ensuring a secure supply of medical isotopes and maintaining safe and reliable operations at the Chalk River Laboratory. However, the CMA remains preoccupied with Canada's ability to ensure a long-term, stable and predictable supply of medically necessary isotopes. That is why we are uneasy about the federal government's exit strategy from the isotope production sector. The report of the federal government's Expert Panel on the Production of Medical Isotopes, (December 2009) and the federal government's response to that report, (March 2010) appears to focus on the viability of this specific sector of the nuclear industry and has not alleviated our concerns. The government's response to the Panel Report was disappointing to the medical community. The government's decision to abandon Canada's long-standing international leadership in this sector is disheartening. Of particular concern is the absence of both immediate and medium-term solutions to address the current and impending challenges facing nuclear medicine. This is simply unacceptable. The CMA, along with our colleagues in the medical community, continues to assert that ensuring access to safe and reliable medical procedures and the provision of high-quality patient care must be the fundamental consideration of government decisions. While the production cost of isotopes cannot be ignored, particularly in times of global fiscal challenges, the medical application and benefits received are of paramount importance and must be neither discounted nor dismissed. Early diagnosis and treatment are key factors in successful outcomes in cardiac and cancer cases. Without early diagnosis and treatment, patients have an increased risk of needing greater medical intervention later on. With more intensive treatment comes a corresponding increase in costs to the health care system and, most importantly, poorer outcomes for patients. Specific concerns identified by the CMA and the medical community include, but are not limited to the following: * Canada's current dependence on international reactors, without a practical back-up plan should these reactors experience difficulties, or shutdown for routine maintenance. This is especially worrisome as the international agency, the Association of Imaging Producers & Equipment Suppliers (AIPES) warns of the unprecedented level of shortages, in a large part due to the Canada's Chalk River nuclear reactor remaining off line until August 2010 or beyond. In a recent Supply Crisis Update, AIPES points out that with a number of international reactors off-line for scheduled maintenance, the remaining reactors -the OPAL (Australia), Maria (Poland) and REZ (Czech Republic) reactors-are producing Mo99, but their combined output is limited to 15 - 20 % of the world requirements. * The abandonment of Canada's international responsibilities and world leadership in this sector is counter to the government's own innovation and productivity agenda. * A growing reliance on emerging technology, cyclotrons and liner accelerators that have yet to be proven as a suitable secure alternative source of radiopharmaceutical. * A projected future supply chain that is reliant on external sources, rather than domestic production, in times of domestic supply shortages. As well, we are concerned that the federal government is leaving it to the marketplace, solely relying on current distributors to identify external sources supply, rather than searching to identify alternative safe sources of supply. * Basing Canada's supply strategy on relicensing of the Chalk River reactor five years past its current license with no current guarantees that the plant will return and remain in production, let alone meet relicensing standards. * The apparent lack of a federal contingency plan if, in 2016, alternative sources of supply and alternative emerging technology does not meet clinical needs. * An analysis of the overall costs to the health care system as a result of the increased costs incurred during the prolonged period of shortages of isotopes supply and the rising costs as the demand for the alternative diagnostic and treatment models is not apparent. * Initiatives to help mitigate increased costs for governments and particularly for nuclear medicine facilities do not exist. The just released survey by the Canadian Institute for Health Information found that two-thirds of nuclear medicine facilities reported that they experienced an increase in the cost of isotopes and that they were managing but exceeding their budget due to vendor surcharges. Only 2% reported that the isotope supply disruptions had no economic impact. Canada's medical community therefore strongly urges that consideration be given to: * investing in a mixed-use reactor for research and isotope production, as per the recommendation of the Expert Panel on Isotopes Production report of December, 2009; * putting in place appropriate strategies and contingency plans to meet the health needs of Canadians; in particular consider a national deployment of PET technology for cancer detection and follow up. * enhancing transparency by the government that provides more information on the short and medium-tern detailed plans to address isotope shortages; * increasing the direct consultation with the official representatives of the nuclear medicine and medical community; * making a public commitment to keep the Chalk River NRU reactor operational beyond the arbitrary date of 2016, as long as necessary and until secure alternative supplies of isotopes or alternative radiopharmaceuticals are proven and are in place; and, * ensuring that the CNSC resurrects the external medical advisory council to facilitate communication between the medical community and the commission. Prior to 2001, members of the council provided CNSC staff with insight into how operational and policy decisions would affect patient care across the country. Canada's doctors believe that the federal government must maintain a leadership role in this sector and must not compromise the medical needs of Canadians.
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Elder Abuse and Disability Hearing: CMA's Presentation to the Parliamentary Committee on Palliative and Compassionate Care

https://policybase.cma.ca/en/permalink/policy10060
Date
2010-10-25
Topics
Population health/ health equity/ public health
  1 document  
Policy Type
Parliamentary submission
Date
2010-10-25
Topics
Population health/ health equity/ public health
Text
The Canadian Medical Association (CMA) wishes to commend the multi-party group of Members of Parliament who have come together to form the Parliamentary Committee on Palliative and Compassionate Care. The challenge we face today in caring for our aging population is only going to get greater. Statistics Canada has projected a rapid increase in the proportion of seniors in the population. The first wave of the baby boom generation turns 65 next year. By 2031, seniors will account for roughly one-quarter of the population, nearly double the 13.9% observed in 2009.1 Canadians are clearly concerned about their ability to cope with future health care expenses, either their own or those of their parents. Respondents to the CMA's 2010 Annual National Report Card on Health Care survey anticipate a range of implications associated with our aging population: * 29% reported that they will likely alter their retirement plans (e.g., work longer) to help pay for their own future costs or those of their parents; * Almost one in five (19%) anticipates moving their parents into their own home and supporting them financially; and * One in six (16%) anticipates paying for their parents to live in a nursing home.2 The CMA believes that the federal government could play a key role in allaying Canadians' concerns about the future by leading negotiations with the provinces and territories and taking direct action on extending access along the continuum of care. These actions should focus on three priority areas: * Increasing access by all Canadians to affordable prescription drugs; * Supporting informal caregivers; and * Increasing access to palliative care at the end of life. If nothing is done to extend Medicare to cover more of the continuum of care, it will erode over time as a national program. When the Canada Health Act (CHA) was passed in 1984, physician and hospital services represented 57% of total health spending; this had declined to 42% as of 2009.3 While there is significant public spending beyond CHA-covered services (more than 25% of total spending) for programs such as seniors' drug coverage and home care, these programs are not subject to the CHA principles and coverage across the provinces and territories varies significantly. Access to Prescription Drugs The federal government missed an excellent opportunity to modernize Medicare in July 2004 when Premiers called on it to upload responsibility for drug programs. The Premiers stated that "a national pharmaceutical program should immediately be established. The federal government should assume full financial responsibility for a comprehensive drug plan for all Canadians, and be accountable for the outcomes."4 The federal government did not give this offer even fleeting consideration. Instead, the September 2004 10-Year Plan to Strengthen Health Care contained a watered-down version of the First Ministers' 2003 commitment to ensure that all Canadians would have reasonable access to catastrophic drug coverage by the end of 2005/06. The 2004 Accord reduced this commitment to the development of costing options for pharmaceutical coverage, as part of a nine-point National Pharmaceuticals Strategy (NPS).5 Costing options were included in the 2006 progress report of the NPS but they included estimates of the cost of catastrophic coverage wildly exceeding those of Romanow and Kirby, ranging from $6.6 billion to $10.3 billion.6 Nothing further has been heard about the NPS since stakeholder consultations were held in fall 2007. As recently as September 2008, the provinces and territories (PTs) were still interested in federal participation in pharmaceuticals. In the communiqué from their annual meeting, the PT health Ministers called for a three-point funding formula to support a national standard of pharmacare coverage, including: * PT flexibility and autonomy in program design; * Prescription drug costs not to exceed 5% of net income; and * Federal and PT governments to cost share 50/50, estimated at $2.52 billion each in 2006.7 Again there was no reaction from the federal government. Since then the PT governments have appeared to be giving up hope of federal participation in access to pharmaceuticals. At their June 2009 meeting, the western Premiers announced they would develop a joint western purchasing plan for pharmaceuticals,8 and more recently at the August 2010 meeting of the Council of the Federation, Premiers agreed to establish a pan-Canadian purchasing alliance for common drugs, medical supplies and equipment.9 Health Ministers reaffirmed this commitment at their September 2010 meeting.10 One can speculate that had the federal government taken up the Premiers' offer in 2004, many aspects of the NPS would be in place by now. Meanwhile, access to prescription drugs presents a hardship for many Canadians. In the CMA's 2009 National Report Card survey, nearly one in six (14%) reported they had either delayed or stopped buying some prescription drugs. This ranged from more than one in five (22%) with annual incomes of less than $30,000 to just over one in 20 (7%) of those with incomes greater than $90,000.11 The wide geographic disparity in out-of-pocket drug expenditures is shown in the table below, which is compiled from Statistics Canada's 2009 Survey of Household Spending. Table 1 shows the percentage of households spending more than 3% and 5% of after-tax income on prescription drugs, by province, in the year prior to the survey. [Note - see PDF for correct display of table information] % of Households Spending Greater than 3% and 5% of After-tax Income on Prescription Drugs, Canada and Provinces, 2008 Geography >3% >5% Canada 7.6 3.0 Newfoundland and Labrador 11.6 5.4E Prince Edward Island 13.3 5.8E Nova Scotia 8.9 3.8 New Brunswick 9.1 4.1E Quebec 11.6 3.3 Ontario 4.7 2.2E Manitoba 12.0 5.2 Saskatchewan 11.5 5.9 Alberta 4.6E 2.2E British Columbia 7.5 3.6 E - Use with caution - high coefficient of variation Source: Statistics Canada, CANSIM Table 109-5012 Under both thresholds there is a more than two-fold variation across provinces in the incidence of catastrophic drug expenditures. At the 5% threshold the range is from 2.2% of households in Ontario and Alberta to 5.8% in PEI and 5.9% in Saskatchewan. With the growing availability of more expensive drugs, this variation is only likely to be exacerbated in the years ahead. Recommendation 1 The federal government should negotiate a cost-shared program of comprehensive prescription drug coverage with the provincial/territorial governments. This program should be administered through provincial/territorial and private prescription drug plans to ensure that all Canadians have access to medically necessary drug therapies. Such a program should include the following elements: * A mandate for all Canadians to have either private or public coverage for prescription drugs; * Uniform income-based ceiling (between public and private plans across provinces/territories) on out-of-pocket expenditures on drug plan premiums and/or prescription drugs (e.g., 5% of after-tax income); * Federal/provincial/territorial cost-sharing of prescription drug expenditures above a household income ceiling, subject to capping the total federal and/or provincial/territorial contributions either by adjusting the federal/provincial/territorial sharing of reimbursement or by scaling the household income ceiling or both; * Group insurance plans and administrators of employee benefit plans to pool risk above a threshold linked to group size; and * A continued strong role for private supplementary insurance plans and public drug plans on a level playing field (i.e., premiums and co-payments to cover plan costs). In negotiating this plan, consideration should be given to the following: * Establishing a program for access to expensive drugs for rare diseases where those drugs have been demonstrated to be effective; * Assessing the options for risk pooling to cover the inclusion of expensive drugs in public and private drug plan formularies; * Provision of adequate financial compensation to the provincial and territorial governments that have developed, implemented and funded their own public prescription drug insurance plans; and * Provision of comprehensive coverage of prescription drugs and immunization for all children in Canada. Supporting Informal Caregivers As the population ages, the incidence of diseases associated with dementia is projected to increase dramatically. A 2010 study commissioned by the Alzheimer Society of Canada has reported that the 2008 level of an estimated 103,728 new dementia cases is expected to more than double to 257,811 per year by 2038. Over this period, the demand for informal caregiving will skyrocket. In 2008, the Alzheimer Society reports, the opportunity cost of unpaid care giving was estimated at almost $5 billion. By 2038 this cost is expected to increase by 11-fold, to reach $56 billion, as the overall prevalence of dementia will have risen to 1.1 million people, representing 2.8% of the Canadian population.12 The burden of informal care giving extends beyond the costs related to dementia. Statistics Canada's 2007 General Social Survey has documented the extent to which Canadians are providing unpaid assistance to family, friends or other persons with a long-term health condition or physical limitation. Nationwide, 1.4 million adults aged 45 or over living in the community were receiving care in 2007. Of this number almost one in two (46.9%) were receiving both paid and unpaid care, almost three in 10 (27.4%) were receiving unpaid care only, and just under one in five (18.8%) were receiving paid care only. This underscores the importance of the informal sector. In terms of who was providing this care, an estimated four million Canadians were providing care, of whom one million were aged 65 or over, while almost two million (1.8) were in the prime working age range of 45 to 54. The provision of unpaid care represents a significant time commitment. The caregivers who reported helping with at least one activity spent an average 11.6 hours in a typical week doing so. Those providing care reported significant personal consequences. One in three reported spending less time on social activities (33.7%) or incurring extra expenses (32.7%), almost one in five cancelled holiday plans (18.7%) or spent less time with their spouse (18.7%), and more than one in 10 (13.7%) reported that their health had suffered. The 2.5 million informal caregivers who were in the paid labour force were likely to report that caregiving had had a significant impact on their jobs. Almost one in four (24.3%) reported missing full days of work and one in six (15.5%) reported reducing hours of work. Compared to the total population, informal caregivers were more likely to report stress in their lives. Almost three in 10 (27.9%) reported their level of stress on most days to be either quite a bit or extremely stressful compared to fewer than one in four (23.2%) of the total population.13 As the demand for informal care grows, it seems unlikely that the burden of informal caregiving will be sustainable without additional support. The federal government took the positive step in 2004/05 of introducing Employment Insurance (EI) Compassionate Care Benefits for people who are away from work temporarily to provide care or support to a family member who is gravely ill and at risk of dying within 26 weeks.14 So far, however, this program has had limited uptake. In 2007/08, 5,706 new claims were paid.15 This pales in comparison to the 235,217 deaths that year (although not all of these would be candidates for this type of care).16 Recommendation 2 The federal government should implement measures within its jurisdiction, such as the use of tax credits, to support informal caregivers. Increasing Access to Palliative Care at the End of Life The Senate of Canada, and Senator Sharon Carstairs in particular, have provided exemplary leadership over the last 15 years in highlighting both the progress and the persistent variability across Canada in access to quality end-of-life care. The Senator's 2005 report Still Not There noted that only an estimated 15% of Canadians have access to hospice palliative care and that for children the figure drops even further to just over 3%.17 The 2005 report repeated the 1995 call for a national strategy for palliative and end-of-life care. To date, palliative care in Canada has primarily centred on services for those dying with cancer. However, cancer accounts for less than one-third (30%) of deaths in Canada. Diseases at the end of life, such as dementia and multiple chronic conditions, are expected to become much more prevalent in the years ahead. The demand for quality end-of-life care is certain to increase as the baby boom generation ages. There will be an estimated 40% more deaths a year by 2020. While the proportion of Canadians dying in hospital has been decreasing over the past decade, many more Canadians would undoubtedly prefer to have the option of hospice palliative care at the end of their lives than current capacity will permit. In the 2004 Health Accord, First Ministers built on their 2003 Accord by agreeing to provide first dollar coverage for certain home care services by 2006, including end-of-life care for case management, nursing, palliative-specific pharmaceuticals and personal care at the end of life. Seven years later we have no comprehensive picture of the availability of end-of-life care across Canada. The Health Council of Canada's last detailed reporting on the implementation of the 2003 Accord was in 2006. At that time, the only province to report comprehensive end-of-life care was British Columbia.18 For most other jurisdictions, end-of-life care was discussed under "next steps." Since then, the Health Council has ceased comprehensive reporting on the Accord. In the 2007 National Physician Survey, doctors across Canada were asked to rate the accessibility of the range of services for their patients. Just one in three (32%) rated access to palliative care services as either excellent or very good.19 In 2006, the Canadian Hospice Palliative Care Association and the Canadian Home Care Association jointly issued a 35-point "gold standard" for palliative home care, covering the areas of case management, nursing care, pharmaceuticals and personal care, which they commended to governments.20 In its April 2009 report, the Special Senate Committee on Aging recommended a federally funded national partnership with provinces, territories and community organizations to promote integrated, quality end-of-life care for all Canadians, the application of gold standards in palliative home care to veterans, First Nations and Inuit, and federal inmates, and renewed research funding for palliative care.21 In 2010, the Quality End-of-Life Care Coalition of Canada (QELCC), of which the CMA is a member, released its Blueprint for Action 2010 to 2020. The four priorities are: * Ensure all Canadians have access to high-quality hospice palliative end-of-life care; * Provide more support for family caregivers; * Improve the quality and consistency of hospice palliative end-of-life care in Canada; and * Encourage Canadians to discuss and plan for end-of-life.22 This blueprint embodies the sound ideas that have emerged over the past decade. In June 2010, Senator Carstairs released her latest report Raising the Bar, which, while acknowledging some of the achievements that have been made in palliative care, repeats her previous calls for a national role and active engagement of the federal government.23 A wide range of stakeholders either have, or should have, a significant stake in the issue of palliative care. They include patients and the organizations that advocate on their behalf, caregivers (both formal and informal), the institutional and community health sectors, and the employer/business community. Recommendation 3 The CMA urges the federal government to collaborate with the provincial and territorial governments to convene a national conference in 2011 to assess the state of palliative care in Canada. Notes 1 Statistics Canada. Population projections for Canada, provinces and territories 2009 to 2036. Catalogue no. 91-520-X. Ottawa. Minister of Industry, 2010. 2 Canadian Medical Association. 10th Annual National Report Card on Health Care, August, 2010. http://www.cma.ca/multimedia/CMA/Content_Images/Inside_cma/Media_Release/2010/report_card/2010-National-Report-Card_en.pdf. Accessed 09/28/10. 3 Canadian Institute for Health Information. National health expenditure trends 1975 to 2009. Ottawa, 2009. 4 Canadian Intergovernmental Conference Secretariat. Premiers' action plan for better health care: resolving issues in the spirit of true federation. July 30, 2004. http://www.scics.gc.ca/cinfo04/850098004_e.html. Accessed 09/28/10. 5 Canadian Intergovernmental Conference Secretariat. A 10-year plan to strengthen health care. http://www.scics.gc.ca/cinfo04/800042005_e.pdf. Accessed 09/28/10. 6 Health Canada. National Pharmaceuticals Strategy Progress Report. June 2006. http://www.hc-sc.gc.ca/hcs-sss/alt_formats/hpb-dgps/pdf/pubs/2006-nps-snpp/2006-nps-snpp-eng.pdf. Accessed 09/28/10. 7 Canadian Intergovernmental Conference Secretariat. Annual Conference of Provincial-Territorial Ministers of Health. September 4, 2008. http://www.scics.gc.ca/cinfo08/860556005_e.html. Accessed 09/28/10. 8 Canadian Intergovernmental Conference Secretariat. Premiers taking action on pharmaceuticals. June 18, 2009. http://www.scics.gc.ca/cinfo09/850114004_e.html. Accessed 09/28/10. 9 Council of the Federation. Premiers protecting Canada's health care systems. http://www.councilofthefederation.ca/pdfs/PremiersProtectingCanadasHealthCareSystem.pdf. Accessed 09/28/10. 10 Canadian Intergovernmental Conference Secretariat. P/T health Ministers work together to advance common issues. September 13, 2010. http://www.scics.gc.ca/cinfo10/860578004_e.html. Accessed 09/28/10. 11 Canadian Medical Association. 9th Annual National Report Card on Health Care. http://www.cma.ca/multimedia/CMA/Content_Images/Inside_cma/Media_Release/2009/report_card/Report-Card_en.pdf. Accessed 09/28/10. 12Alzheimer Society of Canada. Rising tide: the impact of dementia on Canadian society. http://www.alzheimer.ca/docs/RisingTide/Rising%20Tide_Full%20Report_Eng_FINAL_Secured%20version.pdf. Accessed 09/28/10. 13 Statistics Canada. 2007 General Social Survey: Care tables. Catalogue no. 89-633-X. Ottawa, Minister of Industry, 2009. 14Human Resources and Skills Development Canada. Information for health care professionals: EI Compassionate Care. http://www.rhdcc-hrsdc.gc.ca/eng/publications_resources/health_care/ei_ccb.shtml. Accessed 09/28/10. 15 Human Resources and Skills Development Canada. Table 2.12 Compassionate care benefits. http://www.hrsdc.gc.ca/eng/employment/ei/reports/eimar_2009/annex/annex2_12.shtml. Accessed 09/28/10. 16 Statistics Canada. Deaths 2007. The Daily, Tuesday, February 23, 2010. 17 Carstairs S. Still not there. Quality end-of-life care: a status report. http://sen.parl.gc.ca/scarstairs/PalliativeCare/Still%20Not%20There%20June%202005.pdf. Accessed 09/24/09. 18 Health Council of Canada. Jursdictional tables on health care renewal. Companion document to Health care renewal in Canada Measuring up? Annual report to Canadians 2006. Toronto, ON, 2007 19 College of Family Physicians of Canada. Canadian Medical Association. Royal College of Physicians and Surgeons of Canada. National Physician Survey 2007. Q25a. Please rate the accessibility of the following for your patients. http://www.nationalphysiciansurvey.ca/nps/2007_Survey/Results/ENG/National/pdf/Q25/Q25aALL.only_NON.CORE.only.pdf. Accessed 09/28/10. 20 Canadian Hospice Palliative Care Association. Canadian Home Care Association. The pan-Canadian gold standard for palliative home care. http://www.chpca.net/resource_doc_library/pan-cdn_gold_standards/Gold_Standards_Palliative_Home_Care.pdf. Accessed 09/28/10. 21 Special Senate Committee on Aging. Final report: Canada's aging population: Seizing the opportunity. April 2009. http://www.parl.gc.ca/40/2/parlbus/commbus/senate/com-e/agei-e/rep-e/AgingFinalReport-e.pdf. Accessed 09/28/10. 22 Quality End -of-life Coalition of Canada. Blueprint for action 2010 to 2020. http://www.chpca.net/qelccc/information_and_resources/Blueprint_for_Action_2010_to_2020_April_2010.pdf. Accessed 09/28/10. 23Carstairs S. Raising the bar: a roadmap for the future of palliative care in Canada. June 2010. http://sen.parl.gc.ca/scarstairs/PalliativeCare/Raising%20the%20Bar%20June%202010%20(2).pdf. Accessed 09/29/10.
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Healthy Canadians lead to a Productive Economy: Canadian Medical Association 2011 pre-budget consultation submission to the Standing Committee on Finance

https://policybase.cma.ca/en/permalink/policy10012
Date
2010-08-13
Topics
Health systems, system funding and performance
  1 document  
Policy Type
Parliamentary submission
Date
2010-08-13
Topics
Health systems, system funding and performance
Text
The Canadian Medical Association's (CMA) pre-budget submission is based on the premise 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 of any productivity agenda. With the recent release of its Health Care Transformation in Canada: Change That Works. Care That Lasts. policy document, the CMA declared its readiness to take a leadership position in confronting the hard choices required to make health care work better for Canadians. Physicians are reaching out to the Canadian public, opinion and business leaders, governments, interested parties and stakeholders to find ways to improve our health care system and to make sure that the upcoming reforms will focus on better serving patients. Canada's health care system cannot continue on its current path, especially as pressure grows from an aging population. The system needs to be massively transformed, a task that demands political courage and leadership, flexibility from within the health care professions and far-sightedness on the part of the public. It is a lot to demand, but one of Canada's most cherished national institutions is at stake. We must work together toward a common vision of what we aspire for our health care system. The CMA commends the federal government for publicly stating it will honour its previous commitment of a 6% annual increase to the Canada Health Transfer through to 2014. This sustained predictable funding has brought some long-term stability to the publicly financed health care sector. However, the CMA believes that the health care system must be capable of withstanding or accommodating demand surges and fiscal pressure. Capacity and innovation strategies need to be developed and implemented to meet emerging health necessities. In this brief, the CMA identifies 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. Pressure is mounting on the system and there is a need to move beyond data collection to interdisciplinary collaboration. Including health care providers in the decision-making process would lead to better health public policy decisions, and result in much needed pan-Canadian health human resource planning. By making strategic direct investments in health human resources, public health and retirement savings, the federal government would retain its leadership role and contribute to the sustainability of a patient-centred health care system. Health care's contribution: A more productive and innovative economy The health care system in Canada employs over a million people, or 7.5% of the labour force. In 2009, Canada invested $183 billion in health care, representing 11.9% of our GDP. The benefits of health care investments not only contribute to a higher quality of life for all Canadians, but the economic multiplier effect of the initial investment is estimated to create an additional $92 billion in economic activity, such as in the high technology sector, financial services and R&D jobs.i Further federal investments in the health care system contribute to ensuring a more productive and innovative economy. Better Health, Improved Productivity The Conference Board of Canadaii, the Organization for Economic Co-operation and Development (OECD) iii, the World Health Organizationiv, the Commonwealth Fundv, and the Frontier Centre for Public Policyvi all rate Canada's health care system poorly in terms of "value for money" as well as efficiency. In both 2008 and 2009, the Euro-Canada Health Consumer Index ranked Canada 30th of 30 countries (the U.S. was not included in the sample) in terms of value for money spent on health care. Canadians deserve better. We know that investments in quality today will pay off in improved health that will reduce health care demand and expenditures down the road. The resultant improved productivity from the reduction of illness in the population will generate economic dividends for the country. Our proposals are informed by regular consultations with our 72,000 physician members and reflect what they believe are the most pressing gaps that exist in our health care system today. These recommendations will also start the process of fostering transformation of the health care system that not only serves the health needs of Canadians, but makes our health care system more effective, accountable and sustainable now and for generations to come. * Please note that the sum of the following recommendations would add less than 0.5% to the current $25 billion Canada Health Transfer that is committed to the provinces. Recommendations for the 2011 Federal Budget: A. Investing in Health Human Resources: $53.1 million over 4 years 1. The federal government should fulfill the balance of its 2008 election promisevii of investing $33.1 million over 4 years to fund 35 new residencies per year; and invest $20 million over 4 years in the repatriation of Canadian physicians working abroad. B. Investing in pandemic preparedness (post H1N1): $500 million over 5 years 2. The federal government should increase funding ($200 million over 5 years) to enhance disease surveillance by linking public health databases with real-time clinical information through patient Electronic Medical Records in order to facilitate data collection and analysis between local public health authorities and primary care practices. 3. The federal government should increase funding ($200 million over 5 years) for local health emergency preparedness planning to improve collaboration and coordination of clinical care and public health structures at the local level during public health crises and reduce the variation of capacity across the country. 4. The federal government should invest in the creation of a pan-Canadian strategy ($100 million over 5 years) to build a process for a harmonized national clinical response, including vaccine programs in times of potential health crises. C. Improving retirement savings options for the self-employed: federal taxes to be deferred over time 5. The federal government should increase RRSP limits and explore opportunities to provide pension vehicles for self-employed Canadians. D. Encourage Canadians to save for long-term care needs: federal taxes to be deferred over time 6. The federal government should study options for pre-funding long-term care, including private insurance, tax-deferred and tax-prepaid savings approaches, and contribution-based social insurance. E. Support for informal caregivers 7. The federal government should undertake pilot studies that explore tax credit and/or direct compensation for informal caregivers for their work and expand relief programs for informal caregivers that provide guaranteed access to respite services for people dealing with emergency situations. A. Investing in Health Human Resources: $53.1 million over 4 years Every high-performing health system begins with a strong primary care system. Yet roughly 5 million Canadians do not have a regular family physician, and once Canadians do access primary care, they often face long waits to see consulting specialists and further waits for advanced diagnostics and treatment. Part of the reason for these delays is the shortage of health care professionals in Canada and the lack of long-term pan-Canadian planning to ensure needs are met. Canada ranks 26th of 30 OECD member countries in physician-to-population ratio. The lack of physicians in Canada puts the system under pressure and the impact of this is being felt by patients across the country. A Centre for Spatial Economics studyviiicommissioned by the CMA, found that the Canadian economy is expected to lose $4.7 billion in 2010, as a result of excessive wait times for just four procedures: joint replacements, MRIs, coronary artery bypass surgery and cataract surgery. When people wait too long for care businesses face increased human resource costs to replace lost or affected employees. There is a loss in output and especially productivity. The reduction in output would lower federal and provincial government revenues in 2010 by $1.8 billion. The econometric model in the report used to calculate these costs also estimates that to cut wait times to government recommended benchmarks would require a $586 million investment or just 2% of the current Canada Health Transfer. This investment would boost GDP by $6.2 billion. The global shortage of health professionals compounds the problem - while Canadian training programs still lack sufficient seats to produce enough new providers to meet current and future demands, Canadian-educated physicians, nurses, technicians, and other health professionals are being lured away by ample opportunities to train and work outside Canada. The CMA commends the federal government for recently announcing the Northern and Remote Family Medicine Residency Program in Manitoba, which constitutes an investment of just over $6.9 million. The program will provide extensive medical training for 15 additional family medicine residents over the next four years. We urge the government to build on this announcement and honour its full commitment. Thousands of health care professionals are currently working abroad, including approximately 9,000 Canadian-trained physicians. We know that many of the physicians who do come back to Canada are of relatively young age, meaning that they have significant practice life left. While a minority of these physicians return on their own, many more can be repatriated in the short term through a relatively small but focussed effort by the federal government, led by a secretariat within Health Canada. Recommendation 1: The federal government should fulfill its 2008 election promiseix of investing $33.1 million over 4 years to fund 35 new residencies per year; and invest $20 million over 4 years in the repatriation of Canadian physicians working abroad. B. Investing in pandemic preparedness (post H1N1): $500 million over 5 years The absence of a national communicable disease/immunization monitoring system is an ongoing problem. In 2003, the report of the National Advisory Committee on SARS and Public Health recommended that "the Public Health Agency of Canada should facilitate the long term development of a comprehensive and national public health surveillance system that will collect, analyze, and disseminate laboratory and health care facility data on infectious diseases... to relevant stakeholders." Seven years later, Canada still does not have a comprehensive national surveillance and epidemiological system. Clinicians' practices are highly influenced by illness patterns that develop regionally and locally within their practice populations; thus, surveillance data are useful in determining appropriate treatment. During the H1N1 outbreak, real-time data were not available to most physicians and when data did become available, they were already several weeks old. Greater adoption of electronic medical records (EMRs) in primary care and better public health electronic health records (EHRs), with the ability to link systems, will augment existing surveillance capacity and are essential to a pan-Canadian system. International strategy and technology consulting firm Booz Allen Hamilton found that the benefits of an interconnected Electronic Health Record (EHR) in Canada could provide annual system-wide savings of $6.1 billion. A pan-Canadian electronic health information system is urgently needed and must become a priority during the inter-pandemic phase, with adequate federal funding and provincial/territorial collaboration. Recommendation 2: The federal government should increase funding ($200 million over 5 years) to enhance disease surveillance by linking public health databases with real-time clinical information through patient Electronic Medical Records in order to facilitate data collection and analysis between local public health authorities and primary care practices. Recommendation 3: The federal government should increase funding ($200 million over 5 years) for local health emergency preparedness planning to improve collaboration and coordination of clinical care and public health structures at the local level during public health crises and reduce the variation of capacity across the country. A key measure to combat pandemic influenza is mass vaccination. On the whole, Canada mounted an effective campaign: 45% of Canadians were vaccinated, and the proportion was even higher in First Nations communities - a first in Canadian history. The outcome was positive, but many public health units were stretched as expectations exceeded their pre-existing constrained resources. Nationally promulgated clinical practice guidelines had great potential to create consistent clinical responses across the country. Instead, the variation and lack of coordination in providing important clinical information during this crises eroded the public's confidence in the federal, provincial and territorial response. Recommendation 4: The federal government should invest in the creation of a pan-Canadian strategy ($100 million over 5 years) to build a process for a harmonized national clinical response, including vaccine programs in times of potential health crisis. C. Improved retirement savings options for self-employed: federal taxes to be deferred over time With the aging Canadian population and the decline in the number of Canadians participating in employer-sponsored pension plans, now is the time to explore strengthening the third pillar of Canada's government-supported retirement income system: tax-assisted savings opportunities and vehicles available to help Canadians save to meet future continuing care needs. Of keen interest to the medical profession are measures to help self-employed Canadians save for their retirement. Physicians represent an aging demographic - 38% of Canada's physicians are 55 or older. Self-employed physicians, like many other self-employed professionals, are unable to participate in workplace registered pension plans (RPPs). This makes them more reliant on Registered Retirement Savings Plans (RRSPs) relative to other retirement savings vehiclesx. The recent economic downturn has shown that volatility of global financial markets can have an enormous impact on the value of RRSPs over the short-and medium-term. This variability is felt most acutely when RRSPs reach maturity during a time of declining market returns and RRSP holders are forced to sell at a low price. The possibility that higher-earning Canadians, such as physicians, may not be saving enough for retirement was raised by Jack Mintz, Research Director for the Research Working Group on Retirement Income Adequacy of Federal-Provincial-Territorial Ministers of Finance. In his Summary Report, Mr. Mintz wrote that income replacement rates in retirement fall below 60% of after-tax income for about 35% of Canadians in the top income quintile. This is due to the effect of the maximum RPP/RRSP dollar limits and the government should consider raising these limits. Recommendation 5: The federal government should increase RRSP limits and explore opportunities to provide pension vehicles for self-employed Canadians. D. Encourage Canadians to save for long-term care needs: federal taxes to be deferred over time According to Statistics Canada's most recent population projections, the proportion of seniors in the population (65+) is expected to almost double from its present level of 13% to between 23% and 25% by 2031xi. With Canadians living longer and continuing care falling outside the boundaries of Canada Health Act (CHA) first-dollar coverage, there is a growing need to help Canadians save for their home care and long-term care needs. These needs are an important part of the retirement picture as the federal government considers options for ensuring the ongoing strength of Canada's retirement income system. Additional information is contained in CMA's submission to the House of Commons Standing Committee on Finance during its study on Retirement Income Security of Canadians (May 13, 2010). Recommendation 6: The federal government should study options for pre-funding long-term care, including private insurance, tax-deferred and tax-prepaid savings approaches, and contribution-based social insurance. E. Support for informal caregivers Much of the burden of continuing care falls on informal (unpaid) caregivers. More than a million employed people aged 45-64 provide informal care to seniors with long-term conditions or disabilities, and 80% of home care to seniors is provided by unpaid informal caregivers. Canada lags behind several countries, including the U.K., Australia, Germany, Japan, the Netherlands and the U.S. in terms of supporting informal caregivers. Recommendation 7: The federal government should undertake pilot studies that explore tax credit and/or direct compensation for informal caregivers for their work and expand relief programs for informal caregivers that provide guaranteed access to respite services for people dealing with emergency situations. The CMA encourages the federal government to consider the recommendation found in the report entitled; Raising the Bar:A Roadmap for the Future of Palliative Care in Canada supported by the Canadian Hospice Palliative Care Association. Conclusion The recommendations contained in the CMA's pre-budget submission represent our priority recommendations for federal investments that will contribute to a healthy, more productive and innovative economy. These recommendations will also start the process of fostering transformation of the health care system that not only serves the health needs of Canadians but makes our health care system more effective, accountable and sustainable now and for generations to come. As the federal government's commitment to the provinces through the 2004 Health Care Accord expires in 2014, it is imperative that investments are made that not only provide better care but are also sustainable for our country's economy. Appendix Table 1 References i 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. Please see: Economic Footprint of Health Care Services in Canada Prepared for: Canadian Medical Association by Carl Sonnen with Natalie Rylska Informetrica limited January 2007 In economics, the multiplier effect or spending multiplier is the idea that an initial amount of spending (usually by the government) leads to increased consumption spending and so results in an increase in national income greater than the initial amount of spending. The existence of a multiplier effect was initially proposed by Richard Kahn in 1930 and published in 1931. http://en.wikipedia.org/wiki/Fiscal_multiplier Snowdon, Brian and Howard R. Vane. Modern macroeconomics: its origins, development and current state. Edward Elgar Publishing, 2005. ISBNS 1845422082, 9781845422080. p. 61. ii How Canada Performs 2008: A Report Card on Canada, The Conference Board of Canada see: http://sso.conferenceboard.ca/HCP/overview/health-overview.aspx iii Organization for Economic Co-operation and Development [OECD] (2007). OECD Health Data 2007. Version 07/18/2007. CD-ROM. Paris: OECD. iv World Health Organization [WHO] (2007). World Health Statistics 2007. see: http://www.who. v Mirror, Mirror on the Wall: An International Update on the Comparative Performance of American Health Care May 15, 2007 (updated May 16, 2007)
Volume 59 Authors: Davis, Schoen, Schoenbaum, Doty, Holmgren, Kriss, Shea see: www.commonwealthfund.org/publications/publications_show.htm?doc_id=482678 vi Euro-Canada Health Consumer Index 2008, Health Consumer Powerhouse, Frontier Centre for Public Policy, FC Policy Series No. 38 see:www.fcpp.org/pdf/ECHCI2008finalJanuary202008.pdf vii Health Care Certainty for Canadian Families, the Conservative Party of Canada, backgrounder 10/08/08. See: http://www.conservative.ca/?section_id=1091&section_copy_id=107023&language_id=0 viii The economic cost of wait times in Canada, the Centre for Spatial Economics, July 2010. ix Health Care Certainty for Canadian Families, the Conservative Party of Canada, backgrounder 10/08/08. See: http://www.conservative.ca/?section_id=1091&section_copy_id=107023&language_id=0 x A more detailed outline of the issues surrounding pension reform can e found in CMA's Submission on Pension Reform Backgrounder for the Standing Committee on Finance, May 13, 2010. www.cma/submissions-to-government xi Statistics Canada. Populations projections. The Daily, Thursday, December 15, 2005.
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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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Presentation to The Standing Committee on the Status of Women

https://policybase.cma.ca/en/permalink/policy10020
Date
2010-04-19
Topics
Health human resources
  1 document  
Policy Type
Parliamentary submission
Date
2010-04-19
Topics
Health human resources
Text
Good afternoon. As was said in my introduction, my name is Anne Doig and like the chair, I am a family physician. I practice as a "full service" family physician, which means that I provide care in hospital as well as in my office, including obstetrical services. I have practiced in Saskatoon for almost 32 years. It is my pleasure to be here today. As President of the Canadian Medical Association, I represent all physicians, but today, I am proud to represent women participating in what is now a traditional occupation for them, that is, medicine. Joining me today is Dr. Mamta Gautam, a specialist and champion of physician health and well-being. For 20 years, she worked as a psychiatrist treating physicians exclusively in her private practice in Ottawa, and has been hailed as "the Doctor's Doctor." The Association of Universities and Colleges of Canada has reported full-time university enrolment increased by more than 190,000, or 31%, between 2000 and 2006 and now stands at record levels. Full-time male enrolment has passed 350,000 students and full-time female enrolment has passed 460,000. Women account for two-thirds of full-time enrolment growth since 1971, a surge driven by the rapid increase in women's participation in the professions, including medicine. As it stands now, the males outnumber females among practicing physicians by 67%-33%. While there are still more men than women in practice, the percentage of female first-year residents in 2008 was 57%. This is a reversal of the percentage when I graduated, and an increase from 44% fifteen years ago. This means that a significant majority of physicians close to the beginning of their medical careers, are women. Not surprisingly, given those figures, there are many medical disciplines where the proportion of females is much higher than it was even just a few years ago. For instance, in general surgery - long held to be a bastion of male physicians - females comprised 18% of the 1993 first year residents compared to 40% in 2008. Just over half of first-year family medicine residents in 1993 were female compared to 64% today. However, women medical graduates still tend to choose to pursue residency training in family medicine, pediatrics, and obstetrics/gynecology in greater proportions than their male counterparts. As has always been the case, males continue to have a stronger preference for surgery - 23% compared to 11% of females - although that gap is narrowing. So, the overall numbers of women physicians are increasing as are the percentages of those going into what one might call non-traditional specialties, albeit at a slower rate. The so-called feminization of medicine brings with it several other issues and I will touch on two major ones. First, work-life balance. The rise in the number of women physicians is bringing a positive shift in the way physicians practice and the hours that they keep. Very few of today's young physicians - male or female - are willing to work the long hours that physicians of previous generations did. That said, data from the 2007 National Physician Survey, which included responses from over 18,000 physicians across the country, show that, on average, male doctors still work nearly 54 hours per week, while female doctors work 48 - although many work more than that. These figures do not include time on call, nor time spent on child care or other family responsibilities. Many members of the Committee can empathize with this level of commitment. In contrast, the European Union Work Time Directive has said that the maximum work week must be 48 hours. If Canada were to try to apply that directive to physicians our health care system would grind to a halt. The number of physicians opting to be paid by a means other than pure fee-for-service has dramatically increased. FFS rewards the doctor financially for seeing more patients. Female physicians typically spend more time in each patient encounter, a trait that is valued by patients but not rewarded by FFS remuneration. The second issue is stress. In spite of their increasing numbers, women in medicine still report higher rates of incidents of intimidation, sexual harassment and abuse than their male colleagues. As well, many female physicians continue to assume primary responsibility for home and family commitments in addition to their practice workload, thus compounding their stress levels. Female physicians are more likely to work flexible hours; flexibility in work schedules has been the method by which female physicians balance their professional and personal lives. Yet, as they take on more and strive to be more flexible that in itself creates more stress as they battle to be "all things to all people". The CMA identified the need to address and mitigate the unique demands on women physicians in its 1998 policy on Physician Health and Well-Being. I have brought copies to be shared with you today. As I mentioned at the start, I am joined today by Dr. Gautam who has considerable expertise in the stressors faced by physicians - and women physicians in particular - and in managing them. We will be happy to discuss the participation of women in medicine and to answer questions that you may have. Thank you.
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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.
Documents
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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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Response to Health Canada’s Discussion Papers on “Proposed New Labelling Requirements for Tobacco Products” and “Options for Tobacco Promotion Regulations”

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

https://policybase.cma.ca/en/permalink/policy10010
Date
2010-10-22
Topics
Health care and patient safety
  1 document  
Policy Type
Parliamentary submission
Date
2010-10-22
Topics
Health care and patient safety
Text
We are very pleased to appear on behalf of the Canadian Medical Association before this Senate committee as part of your study of pandemic preparedness and the H1N1 experience in Canada. Earlier this year, the CMA collaborated with the College of Family Physicians of Canada and the National Specialty Society of Community Medicine to present a picture of lessons learned from the frontlines of the pandemic. Together we represent over 80,000 physicians engaged in all aspects of Canada's health care and public health systems. The report includes recommendations that, if acted upon, would help ensure that a strong foundation is in place to protect Canadians from future health threats. As President of the CMA and a practising physician, I am here to present my association's point of view. Physicians have a unique and critical role to play during public health emergencies. Many people turn to their physician first for information and counseling. Physicians are the first line of defence. This was certainly the case during the H1N1 pandemic. This role was intensified by the confusion created by the great variation in mass vaccination programs across the country. Many physicians felt that their urgent need for clinically relevant information was not well recognized by the Public Health Agency of Canada, the Public Health Network and, in some cases, provincial, territorial, regional or local levels. The lack of national leadership on clinical guidance led to delays and the proliferation of differing guidelines across the country. Standard clinical guidance, adaptable to local circumstances, is the norm in medical practice. Nationally disseminated clinical practice guidelines on vaccine sequencing, use of anti-virals and hospital treatment would have created consistent clinical responses across the country. We recommend that the Public Health Network seek advanced pan-Canadian commitment to a harmonized and singular national response to clinical practice guidelines, including mass vaccination programs, during times of potential public health crisis. The CMA also recommends that the Public Health Agency of Canada work closely with the medical specialty societies, as it did successfully with Society for Obstetrics and Gynecology in the development of clinical guidance for the care and treatment of pregnant women. Many physicians and public health workers have complained that multiple levels of government provided similar, but not identical, advice. The differences led to skepticism among both physicians and the public and the inundation of messages led to overload. In situations where scientific evidence is rapidly changing, as was the case during the H1N1 pandemic, we need a national communication strategy, targeted to physicians that can build on communication processes already in place. It is especially important during a health emergency to build on existing systems that work well and can minimize the chances of conflicting messages. It is also important that two-way lines of communication between public health and primary care are established. Embedding primary care expertise into public health planning at all levels would help us avoid problems and improve our response. We believe that the H1N1 immunization process did not adequately engage physicians in planning and delivery. A number of difficulties, such as the impact of bulk packaging, the sequencing of patients and the logistics of inventory management, led to friction between front-line public health practitioners and family physicians. These could have been avoided with strengthened consultation, interdependence and mutual understanding before the crisis. A number of witnesses have noted the importance of surveillance. There is no doubt that greater use of electronic medical records - or EMRs - in primary care could have facilitated surveillance and communications. Family practice clinics with EMRs were able to quickly identify high-risk patients, communicate with them to schedule vaccination appointments, and collect the required data for public health. Another aspect of pandemic planning that cannot be ignored is the possibility that physicians themselves might fall ill. Physicians have never hesitated to provide care to patients during times of crisis, but this obligation must be balanced by a reciprocal obligation of society to physicians. Following the SARS outbreak, the CMA prepared Caring in a Crisis, a policy paper that addresses the need to take into account and plan for what would happen when health care providers become part of the statistics of those infected. We urge the committee to consider this challenge in your deliberations. My last point addresses the lack of surge capacity in Canada's health system. To mount a response to H1N1, public health units pulled human resources from other programs and many critical services were delayed, suspended or cancelled altogether. The resources of our critical care infrastructure were stretched to their limits in many hospitals and frontline health care providers were inundated with telephone calls and visits from the worried well and an increase in visits from those with flu symptoms. If H1N1 had been the severe pandemic that was expected and for which Canada had been preparing, our health system would have been brought to its knees. The CMA has been warning of the lack of surge capacity in our health system for over a decade. Canada remains vulnerable to the risks presented by epidemics and pandemics. If we are to be prepared for the next emergency, a long-range plan to build our public health capacity and workforce and to address the lack of surge capacity in our health system must become a priority. We therefore very much appreciate the review to Canada's response to the H1N1 pandemic that has been undertaken by this Committee, and we look forward to your report. Thank you.
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