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Canadian Medical Association Submission on Bill C-462 Disability Tax Credit Promoters Restrictions Act

https://policybase.cma.ca/en/permalink/policy10812
Date
2013-05-22
Topics
Physician practice/ compensation/ forms
  1 document  
Policy Type
Parliamentary submission
Date
2013-05-22
Topics
Physician practice/ compensation/ forms
Text
The Canadian Medical Association (CMA) is pleased to present this brief to the House of Commons Standing Committee on Finance regarding Bill C-462 Disability Tax Credit Promoters Restrictions Act. The Canadian Medical Association represents 78,000 physicians in Canada; its mission is to serve and unite the physicians of Canada and to be the national advocate, in partnership with the people of Canada, for the highest standards of health and health care. The CMA is pleased that the House of Commons has made Bill C-462 a priority. This bill is an important step toward addressing the unintended consequences that have emerged from the Disability Tax Credit since 2005. Part 2: Issues to be addressed In 2005, the Disability Tax Credit was expanded to allow individuals to back-file for up to 10 years. While this was a welcome tax measure for individuals with disabilities, the CMA has been urging the Canada Revenue Agency to address the numerous unintended consequences that have emerged. Central among these has been the emergence of a "cottage industry" of third-party companies engaged in a number of over-reaching tactics. The practices of these companies have included aggressive promotional activities to seek and encourage individuals to file the Disability Tax Credit. The primary driver behind these tactics is profit; some companies are charging fees of up to 40 per cent of an individual's refund when the tax credit is approved. Further to targeting a vulnerable population, these activities have yielded an increase in the quantity of Disability Tax Credit forms in physician offices and contributed to red tape in the health sector. In some cases, third parties have placed physicians in an adversarial position with their patients. We are pleased that this bill attempts to address the concerns we have raised. The CMA supports Bill C-462 as a necessary measure to address the issues that have emerged since the changes to the Disability Tax Credit in 2005. However, to avoid additional unintended consequences, the CMA recommends that the Finance Committee address three issues prior to advancing Bill C-462. First, as currently written, Bill C-462 proposes to apply the same requirements to physicians as to third-party companies if physicians apply a fee for form completion, a typical practice for uninsured physician services. Such fees are subject to guidelines and oversight by provincial and territorial medical regulatory colleges (see Appendix 1: CMA Policy on Third Party Forms: The Physician Role). The CMA recommends that the Finance Committee: * Amend the definition of "promoters" under section 2 to exclude "a health care practitioner duly licensed under the applicable regulatory authority who provides health care and treatment." * If the committee imports the term "person" from the Income Tax Act, then the applicable section of Bill C-462 should be amended to specify that, for the purposes of the act, "Person does not include a health care practitioner duly licensed under the applicable regulatory authority who provides health care and treatment." Second, the CMA is concerned that one of the reasons individuals may be engaging the services of third-party companies is a lack of awareness of the purpose and benefits of the Disability Tax Credit. Additional efforts are required to ensure that the Disability Tax Credit form (Form T2201) be more informative and user-friendly for patients. Form T2201 should explain more clearly to patients the reason behind the tax credit, and explicitly indicate there is no need to use third-party companies to submit the claim to the CRA. The CMA recommends that the Finance Committee: * Recommend that the Canada Revenue Agency undertake additional efforts to ensure that the Disability Tax Credit form is more informative, accessible and user-friendly for patients. Finally, the CMA recommends that a privacy assessment be undertaken before the bill moves forward in the legislative process. It appears that, as written, Bill C-462 would authorize the inter-departmental sharing of personal information. The CMA raises this issue for consideration because protecting the privacy of patient information is a key duty of a physician under the CMA Code of Ethics. Part 3: Closing The CMA encourages the Finance Committee to address these issues to ensure that Bill C-462 resolves existing problems with the Disability Tax Credit while not introducing new ones. The CMA appreciates the opportunity to provide input to the Finance Committee's study of this bill and, with the amendments outlined herein, supports its passage. Summary of Recommendations Recommendation 1 The definition of "promoters" under section 2 of Bill C-462 should be amended to exclude "a health care practitioner duly licensed under the applicable regulatory authority who provides health care and treatment." Recommendation 2 If the Committee imports the definition of "persons" from the Income Tax Act, the applicable section of Bill C-462 should be amended to specify that, for the purposes of the act, "Person does not include a health care practitioner duly licensed under the applicable regulatory authority who provides health care and treatment." Recommendation 3 The Canada Revenue Agency should undertake additional efforts to ensure that the Disability Tax Credit form is informative, accessible and user-friendly. Recommendation 4 Prior to advancing in the legislative process, Bill C-462 should undergo a privacy assessment.
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Canadian Medical Association Submission on Bill S-209, An Act to Amend the Criminal Code (prize fights)

https://policybase.cma.ca/en/permalink/policy10708
Date
2013-04-15
Topics
Health care and patient safety
  1 document  
Policy Type
Parliamentary submission
Date
2013-04-15
Topics
Health care and patient safety
Text
In 2010, physician delegates to the CMA's annual General Council voted in favour of a ban on mixed martial arts prize fighting matches in Canada. The CMA's complete policy on head injury and sport, the central concern of physicians with respect to mixed martial arts, is attached as an appendix to this brief. A key recommendation in this policy is that physicians discourage participation in sports in which intentional trauma to the head and body is the objective of the sport, as is the case with mixed martial arts (MMA). Background MMA prize fighting, like commercial boxing, is distinct from healthy sport because the basic tenet is to win by deliberately incapacitating one's opponent through violent bodily assault. Professional fighters train in different martial arts disciplines in order to develop the widest possible set of fighting techniques. Blows delivered by hands, feet, elbows and knees are entirely permissible.1 "Bouts" are won in a number of ways that include deliberate head injury such as knockout (KO) and technical knockout (TKO). Physician and referee stoppage are recognized as a necessary option for the declaration of a winner in order to prevent continued violence.4; 5 Despite the introduction of rules and regulations meant to ensure fighter safety, MMA is a violent sport with a high risk of injury. Publications seem to indicate that the overall injury rate in professional MMA competitions ranges approximately from 23 to 28 injuries per 100 fight participations, which is similar to that found in other combat sports involving striking, including boxing.1; 5; 7 Organizers support the rules because they realize that prize fighting can't be sustained as a business if the fighters are unable to return to the ring. The injuries vary in severity but include many types of head injury: ocular injuries, such as rupture of the bony orbit or of the eye itself; facial injuries including fractures; spine injuries; concussion; and tympanic membrane ruptures.2, 6, 7 Most sanctioned matches end in a submission, judge's decision or referee/physician stoppage, as opposed to KO or TKO. It is important to note that the overall risk of critical injury, defined as a persistent acquired brain injury, permanent blindness, permanent functional loss of limb or paralysis, appears to be low. The ability of referees to intercede and for fighters to voluntarily concede victory to their opponents, as well as the presence of physicians at the ringside, are all thought to play a role in minimizing the risk of critical injury.7 The risk of traumatic brain injury and concussion nevertheless remains one of the chief concerns with respect to MMA. KO rates are thought to be lower in professional MMA events than in similar boxing competitions, but it is not clear why. It is well known that knockouts are the result of brain injury4 and at least one study reported that blunt trauma to the head was a common reason for match stoppage. One study reported a severe concussion rate of 16.5 per 100 fighter participations (3.3% of all matches). 6 Regrettably, as in other combat sports, long-term follow-up of players is insufficient to measure how often head injury leads to permanent brain damage.1, 3 Issues Insufficient research Whether you defend or condemn MMA, the true nature and rate of severe brain injuries is speculative.6 Similarly, the absence of longitudinal studies means that the true long-term health implications of MMA fighting can only be surmised. Risk factors for injury Unsurprisingly, losing fighters are at a considerably greater risk for sustaining injury. It is notable that fighters losing by KO or TKO appear to have a higher overall incidence of injury.4 An increased duration of fighting is associated with an increased incidence of injury.3, 5 However, it remains unclear how age and fight experience contribute to the risk for sustaining injury.2, 3, 4 It appears that fighters with head injury continue to fight and sustain further injury, head injury being more clearly associated with injury than are either inexperience or age. Current situation Despite the sport's growing popularity, professional MMA competitions are currently illegal in Canada. Indeed, section 83(2) of the Criminal Code of Canada states that only boxing matches, where only fists are used, are legal. However, the governments of Nova Scotia, Quebec, Ontario, Manitoba and Northwest Territories have regulated/licensed MMA through athletic governing commissions, effectively circumventing the Criminal Code. The legality of the sport in New Brunswick, Alberta and British Columbia currently varies by municipality. CMA Recommendations The CMA recommends that Section 83(2) of the Criminal Code, the ban on mixed martial arts, be maintained in its current form. The CMA recommends that the federal government undertake further research on head injuries and concussion in Canada, including expanding current surveillance tools for the incidence of these injuries. References 1. Bledsoe, G. H. (2009). Mixed martial arts. In R. Kordi, N. Maffulli, R. R. Wroble, & W. A. Angus (Eds.), Combat Sports Medicine (1st ed., pp. 323-330). London: Springer. 2. Buse, G. J. (2006). No holds barred sport fighting: A 10 year review of mixed martial arts competition. British Journal of Sports Medicine, 40(2),169-172. 3. Bledsoe, G. H., Hsu, E. B., Grabowski, J. G., Brill, J. D., & Li, G. (2006). Incidence of injury in professional mixed martial arts competitions. Journal of Sports Science and Medicine, 5(Combat Sports Special Issue), 136-142. 4. Walrod, B. (2011). Current review of injuries sustained in mixed martial arts competition. Current Sports Medicine Reports, 10(5), 288-289. 5. Unified Fighting Championship. (n.d.). Unified rules and other important regulations of mixed martial arts. Retrieved May 28, 2012, from http://www.ufc.com/discover/sport/rules-and-regulations 6. Ngai, K. M., Levy, F., & Hsu, E. B. (2008). Injury trends in sanctioned mixed martial arts competition: A 5-year review from 2002 to 2007. British Journal of Sports Medicine, 42(8), 686-689. 7. Scoggin III, J. F., Brusovanik, G., Pi, M., Izuka, B., Pang, P., Tokomura, S. et al. (2010). Assessment of injuries sustained in mixed martial arts competition. American Journal of Orthopedics, 39(5), 247-251.
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Canadian Medical Association Submission on Motion 315 (Income Inequality)

https://policybase.cma.ca/en/permalink/policy10715
Date
2013-04-25
Topics
Physician practice/ compensation/ forms
  1 document  
Policy Type
Parliamentary submission
Date
2013-04-25
Topics
Physician practice/ compensation/ forms
Text
The Canadian Medical Association is pleased to present its views to the House of Commons Standing Committee on Finance regarding income inequality in Canada. The Canadian Medical Association represents 78,000 physicians in Canada; its mission is to serve and unite the physicians of Canada and to be the national advocate, in partnership with the people of Canada, for the highest standards of health and health care. Income inequality is a growing problem in Canada. According to a Conference Board of Canada report, high income Canadians have seen their share of income increase since 1990 while the poorest and even the middle-income groups have lost income share. In 2010 the top quintile of earners accounted for 39.1% of Canadian income while the bottom quintile only accounted for 7.3%. These numbers led to a ranking for Canada of 12 out of 17 among other high income countries in terms of income inequality.1 Research by the Organization for Economic Co-operation and Development has largely confirmed these results.2 Part 2: Why Income Inequality Matters to Canadian Physicians The issue of income inequality is an important one for Canada's physicians. As physicians, we are not the experts in housing, in early childhood development, income equality and so on. But we are the experts in recognizing the impact of these factors on the health of our patients. Hundreds of research papers have confirmed that people in the lowest socio-economic groups carry the greatest burden of illness.3 In 2001, people in the neighbourhoods with the highest 20% income lived about three years longer than those in the poorest 20% neighbourhoods.4 Mental health is affected as well. Suicide rates in the lowest income neighbourhoods are almost twice as high as in the wealthiest neighbourhoods.5 Studies suggest that adverse socio-economic conditions in childhood can be a greater predictor of cardiovascular disease and diabetes in adults than later life circumstances and behavioural choices.6 Finally, the countries reporting the highest population health status are those with the greatest income equality, not the greatest wealth.7 These differences in health outcomes have an impact on the health care system. Most major diseases including heart disease and mental illness follow a social gradient with those in lowest socio-economic groups having the greatest burden of illness.8 Those within the lowest socio-economic status groups are 1.4 times more likely to have a chronic disease, and 1.9 times more likely to be hospitalized for care of that disease.9 Income plays a role in access to appropriate health care as well. Individuals living in lower income neighbourhoods, younger adults and men are less likely to have primary care physicians than their counterparts.10 Women and men from low-income neighbourhoods are more likely to report difficulties making appointments with their family doctors for urgent non-emergent health problems. They were also more likely to report unmet health care needs.11 People with lower socio-economic status are more likely to be hospitalized for ambulatory care sensitive conditions and mental health12, admissions which could potentially be avoided with appropriate primary care.13 Those with higher socio-economic status are more likely to have access to and utilize specialist services.14 Utilization of diagnostic imaging services is greater among those in higher socio-economic groups.15 Access to preventive and screening programs such as pap smears and mammography are lower among disadvantaged groups.16 It is not just access to insured services that is a problem. Researchers have reported that those in the lowest income groups are three times less likely to fill prescriptions, and 60% less able to get needed tests because of cost.17 Services such as physiotherapy and occupational therapy to name two are often not covered unless they are provided in-hospital or to people on certain disability support programs.18 Access to psychologists is largely limited to people who can pay for them, through private insurance or out of their own pockets.19 Similar access challenges exist for long-term care, home care and end-of-life care. There is a financial cost to this disparity. According to a 2011 report, low-income residents in Saskatoon alone consume an additional $179 million in health care costs than middle income earners.20 A 2010 study by CIHI found increased costs for avoidable hospitalizations for ambulatory care sensitive conditions were $89 million for males and $71 million for females with an additional $248 million in extra costs related to excess hospitalizations for mental health reasons.21 The societal cost of poor health extends beyond the cost to the health care system: healthier people lose fewer days of work and contribute to overall economic productivity.22 According to data in the U.K., those living in the most disadvantaged neighbourhoods experience almost 20 years less disability-free life than those in the highest income neighbourhoods. These individuals will become disabled before they are eligible for old age services, striking two blows to the economy: they will no longer be able to contribute through productive work, and their disability will consume a great deal of health care services.23 The reasons for this inequitable access are multifaceted and include patient specific barriers as well as challenges within the health care system itself. CMA recognizes the need for physicians to work to address the system related barriers. However, one of the biggest challenges for patients themselves remains economic. Having a low-income can prevent access through lack of transportation options, an inability to get time off work, and the inability to pay for services that are not covered by government insurance. Health equity is increasingly recognized as a necessary means by which we will make gains in the health status of all Canadians and retain a sustainable publicly funded health care system. Addressing inequalities in health is a pillar of CMA's Health Care Transformation initiative. Part 3: Ensuring adequate income for all Canadians "The rates of family and child poverty are unacceptably high taking into account Canada's high quality of living standard." 2010 Report of the Committee on Human Resources, Skills and Social Development and the Status of Persons with Disability One reason income is so critical to individual health is that it is so closely linked to many of the other social determinants of health. These include but are not limited to: education, employment, early childhood development, housing, social exclusion, and physical environment. The CMA and its members are concerned that adequate consideration during the decision-making process is not being given to the social and economic determinants of health, factors such as income and housing that have a major impact on health outcomes. Recent decisions such as changes to the qualifying age for Old Age Security, and new rules for Employment Insurance, among others, will have far reaching consequences on the income of individuals, especially those in vulnerable populations. We remind the government that every action that has a negative effect on health will lead to more costs to society down the road. One method to ensure that these unintentional consequences do not occur is to consider the health impact of decisions as part of the policy development and decision-making process. A Health Impact Assessment (HIA) is a systematic process for making evidence-based judgments on the health impacts of any given policy and to identify and recommend strategies to protect and promote health. The HIA is used in several countries, including Australia, New Zealand, the United Kingdom, and increasingly the United States. The HIA can ensure that government departments consider the health impacts of their policies and programs by anticipating possible unintended consequences and taking appropriate corrective action. The use of HIA will allow the federal government to demonstrate leadership in health care in Canada and provide greater accountability to all Canadians. The CMA recommends that: 1. The federal government recognize the importance of the social and economic determinants of health to the health of Canadians and the demands on the health care system; and 2. The federal government requires a health impact assessment as part of Cabinet decision-making. We are hearing about the need to address the poverty and income security of Canadians from stakeholders across the country. We have conducted a series of town halls with Canadians asking them questions about how the social and economic conditions of their communities affect their health. From Winnipeg, to Hamilton to Charlottetown we have heard how poverty and a lack of income is undermining Canadians' health. This public response is not surprising. According to the Conference Board of Canada, more than one in seven children in Canada live in poverty.24 This poverty will severely limit the ability of these children to achieve good health in the future. There are systemic barriers that contribute to this poverty. The annual welfare income in Canada varies between $3,247 for a single person to $21,213 for a couple with two children. The 'best' of Canadian programs provides an income within only 80% of the poverty line. The lowest income is barely 30% of that needed to 'achieve' poverty.25 It is not just people on social assistance, however, that are facing poverty. Data from 2008 indicates that one in three (33%) of children living in poverty had a parent that was employed. Based a review conducted in 2010, one in 10 workers still earned less than $10 an hour in 2009, with 19% paid less than $12. The same study found that roughly 400,000 full-time adult workers, aged 25+, were making less than $10/hr. and therefore paid less than poverty line wages.26 Some physicians are working directly with patients to try and address the income inadequacy which is undermining their health. Physicians from Health Providers Against Poverty in Ontario have developed a tool for physicians to use in screening their patients for poverty and linking them with provincial/territorial and/or federal programs that might help mitigate the health effects of their poverty. This group is also involved in training health care providers to support this work. While this program and others like it are serving as a 'band aid' solution for some living in poverty, the CMA feels that physicians and their patients should not be placed in this position. As part of its study on income inequality, the CMA encourages the Finance Committee to review two recent reports from Parliamentary committees on the same topic. The first and most recent is the report of the House of Commons Committee on Human Resources, Skills and Social Development and the Status of Persons with Disability, Federal Poverty Reduction Plan: Working in Partnership Towards Reducing Poverty in Canada.27 The second is the report of the Senate Committee on Social Affairs, Science and Technology In From the Margins: A Call to Action on Poverty, Housing and Homelessness.28 The Committee on Human Resources, Skills and Social Development and the Status of Persons with Disability, noted that the federal government's efforts to address poverty among Canadian seniors "is generally recognized as one of Canada's most notable achievements of the past 30 years." The report of the Senate Committee made a number of significant observations, two bear repeating: * "[W]hen all the programs are working, when the individual gets all possible income and social supports, the resulting income too often still maintains people in poverty, rather than lifting them into a life of full participation in the economic and social life of their communities." * "[A]t their worst, the existing policies and programs entrap people in poverty, creating unintended perverse effects which make it virtually impossible for too many people to escape reliance on income security programs and even homeless shelters." The public policy debate on addressing income inequality in Canada is not new. For instance, the 1971 report of the Special Senate Committee on Poverty recommended that a guaranteed annual income financed and administered by the federal government be established. In consideration of this concept, from 1974 to 1979, the Governments of Canada and Manitoba funded the Manitoba Basic Guarantee Annual Income Experiment (referred to as "Mincome"). While this was initially designed to be a labour market study, the results were also relevant from a health perspective. A recent study of this data concluded that hospitalizations declined by 8.5 per cent for the Mincome subjects.29 The CMA recommends that: 3. The federal government gives top priority to the development of strategies to minimize poverty in Canada. Part 4: Addressing access barriers in the health sector Access to services not covered by provincial health plans remain a large barrier for Canadians. Those with low incomes are less likely to be able to access needed pharmaceuticals and services due to this barrier. One in 10 Canadians can not afford the medications that they are prescribed.30 This further exacerbates the income inequality that exists. While we urge the federal government to take action on reducing poverty among Canadians, at the minimum action needs to be taken to ensure universal access to needed medical care. The CMA recommends that: 4. Governments, in consultation with the life and health insurance industry and the public, establish a program of comprehensive prescription drug coverage to be administered through reimbursement of provincial/territorial and private prescription drug plans to ensure that all Canadians have access to medically necessary drug therapies; 5. Governments examine methods to ensure that low-income Canadians have greater access to needed medical interventions such as rehabilitation services, mental health, home care, and end-of-life care; and 6. Governments explore options to provide funding for long-term care services for all Canadians. This could include public insurance schemes or registered savings plans allowing Canadians to save for their future long-term care needs. Finally, there is a need to recognize the effect on income related to providing care to family members who are ill. Many Canadians take time off work to care for their children or parents. Without adequate long-term care resources and supports for home care, Canadians may be forced to take a leave from the workforce to provide this unpaid care. Research suggests that more than one third of parents (38.4%) who care for children with a disability are required to work fewer hours to care for their children.31 While the 2011 federal budget provided some relief in the form of a Family Caregiver Tax Credit of up to $300, it is not enough. A 2004 Canadian study placed the value of a caregiver's time at market rates from $5,221 to $13,374 depending on the community of residence.32 This is a significant amount of unpaid work and may further add to income inequalities. Expanding the tax credit available to these individuals would help but there is a need to provide further supports to family caregivers. The CMA recommends that: 7. The federal government expands the relief programs for informal caregivers to provide guaranteed access to respite services for people dealing with emergency situations, as well as increase the Family Caregiver Tax Credit to better reflect the annual cost of family caregivers' time at market rates. Part 5: Conclusion Once again, we commend the Standing Committee on Finance for agreeing to study this important issue. Canada's physicians see the examples of income inequality in their practices on a daily basis. Tackling this important social issue will contribute to not only reducing the burden of disease in Canada but to providing Canadians with the necessary financial resources to achieve good health. Summary of Recommendations Recommendation 1 The federal government recognizes the importance of the social and economic determinants of health to the health of Canadians and the demands on the health care system Recommendation 2 The federal government requires a health impact assessment as part of Cabinet decision-making. Recommendation 3 The federal government gives top priority to the development of strategies to minimize poverty in Canada. Recommendation 4 Governments, in consultation with the life and health insurance industry and the public, establish a program of comprehensive prescription drug coverage to be administered through reimbursement of provincial/territorial and private prescription drug plans to ensure that all Canadians have access to medically necessary drug therapies. Recommendation 5 Governments examine methods to ensure that low-income Canadians have greater access to needed medical interventions such as rehabilitation services, mental health, home care, and end-of-life care; and Recommendation 6 Governments explore options to provide funding for long-term care services for all Canadians. This could include public insurance schemes or registered savings plans allowing Canadians to save for their future long-term care needs. Recommendation 7 The federal government expand the relief programs for informal caregivers to provide guaranteed access to respite services for people dealing with emergency situations, as well as increase the Family Caregiver Tax Credit to better reflect the annual cost of family caregivers' time at market rates. References 1 Conference Board of Canada. How Canada Performs: Income Inequality. Ottawa (ON); 2013. Available: http://www.conferenceboard.ca/hcp/details/society/income-inequality.aspx (accessed 2013 Apr 11). 2 Organisation for Economic Co-operation and Development. Divided We Stand: Why Inequality Keeps Rising: An Overview of Growing Income Inequalities in OECD Countries: Main Findings. Paris (FR); 2011. Available: http://www.oecd.org/els/soc/49499779.pdf (accessed 2013 Apr 11). 3 Dunn JR. The Health Determinants Partnership Making Connections Project: Are Widening Income Inequalities Making Canada Less Healthy? Toronto (ON); 2002. Available: http://www.opha.on.ca/our_voice/collaborations/makeconnxn/HDP-proj-full.pdf (accessed 2011 March 15) 4 Wilkins R, Berthelot JM and Ng E. Trends in Mortality by Neighbourhood Income in Urban Canada from 1971 to 1996. Statistics Canada, Ottawa (ON); 2002. Health Reports 13 [Supplement]: pp. 45-71 5 Marmot, M. Fair Society Healthy Lives: The Marmot Review: Executive Summary. London (UK): 2010. Available: http://www.marmotreview.org/AssetLibrary/pdfs/Reports/FairSocietyHealthyLivesExecSummary.pdf (accessed 2011 Jan 25); Mikkonen J, Raphael D. Social Determinants of Health: The Canadian Facts. Toronto (ON); 2010. Available: http://www.thecanadianfacts.org/The_Canadian_Facts.pdf (accessed 2011 Jan 14) 6 Raphael D. Addressing The Social Determinants of Health In Canada: Bridging The Gap Between Research Findings and Public Policy. Policy Options. March 2003 pp.35-40. 7 Hofrichter R ed. Tackling Health Inequities Through Public Health Practice: A Handbook for Action. The National Association of County and City Health Officials & The Ingham County Health Department. Lansing (USA); 2006. Available: http://www.acphd.org/axbycz/admin/datareports/ood_naccho_handbook.pdf accessed (2012 Mar 16). 8 Dunn, James R. (2002) The Health Determinants Partnership... 9 Canadian Population Health Initiative. Disparities in Primary Health Care Experiences Among Canadians with Ambulatory Care Sensitive Conditions. Canadian Institute for Health Information, Ottawa (ON); 2012. Available: http://secure.cihi.ca/cihiweb/products/PHC_Experiences_AiB2012_E.pdf(accessed 2012 Jan 25). 10 Bierman AS, Angus J, Ahmad F, et al. Ontario Women's Health Equity Report : Access to Health Care Services : Chapter 7. Toronto (ON) Project for and Ontario Women's Health Evidence-Based Report; 2010. Available: http://powerstudy.ca/wp-content/uploads/downloads/2012/10/Chapter7-AccesstoHealthCareServices.pdf (accessed 2012 Dec 10). 11 Bierman AS, Johns A, Hyndman B, et al. Ontario Women's Health Equity Report: Social Determinants of Health & Populations at Risk: Chapter 12. Toronto (ON) Project for and Ontario Women's Health Evidence-Based Report; 2010. Available: http://powerstudy.ca/wp-content/uploads/downloads/2012/10/Chapter12-SDOHandPopsatRisk.pdf (accessed 2012 Dec 10...; Williamson DL, Stewart MJ, Hayward K. Low-income Canadians' experiences with health-related services: Implications for health care reform. Health Policy 2006; 76:106-121. 12 Canadian Institute for Health Information. Hospitalization Disparities by Socio-Economic Status for Males and Females. Ottawa(ON); 2010. Available: https://secure.cihi.ca/free_products/disparities_in_hospitalization_by_sex2010_e.pdf (accessed 2013 Feb 6) 13 Canadian Institute for Health Information. Hospitalization Disparities by Socio-Economic Status...;Roos LL, Walld R, Uhanova J, et al. Physician Visits, Hospitalizations, and Socioeconomic Status: Ambulatory Care Sensitive Conditions in a Canadian Setting. HSR 2005; 40(4): 1167-1185. 14 Allin S. Does Equity in Healthcare Use Vary across Canadian Provinces? Healthc Policy 2008; 3(4): 83-99.;Frolich N, Fransoo R, Roos N. Health Service Use in the Winnipeg Regional Health Authority: Variations Across Areas in Relation to Health and Socioeconomic status. Winnipeg (MB) Manitoba Centre for Health Policy. Available: http://mchp-appserv.cpe.umanitoba.ca/teaching/pdfs/hcm_forum_nf.pdf (accessed 2013 Feb 6); McGrail K. Income-related inequities: Cross-sectional analyses of the use of medicare services in British Columbia in 1992 and 2002. Open Medicine 2008; 2(4): E3-10; Van Doorslaer E, Masseria C. Income-Related Inequality in the Use of Medical Care in 21 OECD Countries. Paris(FR) OECD; 2004. Available: http://www.oecd.org/els/health-systems/31743034.pdf (accessed 2013 Feb 6).;Veugelers PJ, Yip AM. Socioeconomic disparities in health care use: Does universal coverage reduce inequalities in health? J Epidemiol Community Health 2003; 57:424-428. 15 Bierman AS, Angus J, Ahmad F, et al. Ontario Women's Health Equity Report : Access to Health Care Services...Demeter S, Reed M, Lix L, et al. Socioeconomic status and the utilization of diagnostic imaging in an urban setting. CMAJ 2005; 173(10): 1173-1177. 16 Bierman AS, Johns A, Hyndman B, et al. Ontario Women's Health Equity Report: Social Determinants of Health & Populations at Risk: Chapter 12...); Frolich N, Fransoo R, Roos N. Health Service Use in the Winnipeg... Wang L, Nie JX, Ross EG. Determining use of preventive health care in Ontario. Can Fam Physician 2009; 55: 178-179.e1-5; Williamson DL, Stewart MJ, Hayward K. Low-income Canadians' experiences with health-related services... 17 Mikkonen J, Raphael D. Social Determinants of Health: The Canadian Facts.... 18 Barnes S, Dolan LA, Gardner B, et al. Equitable Access to Rehabilitation : Realizing Potential, Promising Practices, and Policy Directions. Toronto (ON) Wellesley Institute; 2012. Available : http://www.wellesleyinstitute.com/wp-content/uploads/2012/06/Equitable-Access-to-Rehabilitation-Discussion-Paper1.pdf (accessed 2013 Feb 6). 19 Kirby M, Goldbloom D, Bradley L. Changing Directions, Changing Lives: The Mental Health Strategy for Canada.Ottawa (ON): Mental Health Commission of Canada; 2012. Available: http://strategy.mentalhealthcommission.ca/pdf/strategy-text-en.pdf (accessed 2013 Mar 12). 20 Saskatoon Poverty Reduction Partnership. From poverty to possibility...and prosperity: A Preview to the Saskatoon Community Action Plan to Reduce Poverty. Saskatoon (SK): Saskatoon Poverty Reduction Partnership; 2011.Available: http://www.saskatoonpoverty2possibility.ca/pdf/SPRP%20Possibilities%20Doc_Nov%202011.pdf (accessed 2012 Mar 13) 21 Canadian Institute for Health Information. Hospitalization Disparities by Socio-economic status... 22 Munro D. Healthy People, Healthy Performance, Healthy Profits: The Case for Business Action on the Socio-Economic Determinants of Health. The Conference Board of Canada, Ottawa (ON); 2008. Available: http://www.conferenceboard.ca/Libraries/NETWORK_PUBLIC/dec2008_report_healthypeople.sflb (accessed 2012 Mar 26). 23 Marmot Sir M. Achieving Improvements in Health in a Changing Environment. Presentation to the World Medical Association, Vancouver (BC); 2010. 24 Conference Board of Canada. How Canada Performs: Child Poverty. Ottawa (ON); 2013. Available: http://www.conferenceboard.ca/hcp/details/society/child-poverty.aspx (accessed 2013 Apr 11). 25 National Council of Welfare. Poverty Trends in Canada: Solving Poverty Information Kit. Her Majesty the Queen in the Right of Canada. Ottawa (ON); 2007. Available: http://www.ncw.gc.ca/l.3bd.2t.1ils@-eng.jsp?lid=140 (accessed 2012 Jan 25). 26 Campaign 2000. 2010 Report Card on Child and Family Poverty in Canada: 1989 - 2010. Toronto (ON); 2010. Available: http://www.campaign2000.ca/reportCards/national/2010EnglishC2000NationalReportCard.pdf (accessed 2013 Apr 11). 27 Hoeppner C, Chair. Federal Poverty Reduction Plan: Working in Partnership Towards Reducing Poverty in Canada. House of Commons Canada. Ottawa (ON); 2010. Available: http://www.parl.gc.ca/content/hoc/Committee/403/HUMA/Reports/RP4770921/humarp07/humarp07-e.pdf (accessed 2013 Apr 17). 28 Eggleton A, Segal H. In From the Margins: A Call TO Action On Poverty, Housing and Homelessness. The Standing Senate Committee on Social Affairs, Science and Technology. Ottawa(ON);2009. Available: http://www.parl.gc.ca/Content/SEN/Committee/402/citi/rep/rep02dec09-e.pdf (accessed 2013 Apr 17). 29 Forget, Evelyn L. The town with no poverty: the health effects of a Canadian Guaranteed Annual Income Field Experiment. University of Toronto Press. Canadian Public Policy 37(3), 283-305. 30 Law MR, Cheng L, Dhala IA et al. The effect of cost adherence to prescription medications in Canada. CMAJ February 21, 2012 vol. 184 no.3. 31 Campaign 2000. 2010 Report Card on Child and Family Poverty... 32 Chappell NL, Dlitt BH, Hollander JA et al. Comparative Costs of Home Care and Residential Care. The Gerontologist 44(3): 389-400.
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CMA Response: Health Canada's Medical Marijuana Regulatory Proposal

https://policybase.cma.ca/en/permalink/policy10702
Date
2013-02-28
Topics
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
  1 document  
Policy Type
Parliamentary submission
Date
2013-02-28
Topics
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
Text
The Canadian Medical Association welcomes the opportunity to comment on proposed changes to Health Canada's Marihuana for Medical Purposes Regulations, published in the Canada Gazette, Part I on December 15, 2012. CMA provided comments on the proposed changes when Health Canada first announced them in June 2011. Our position on these changes, and indeed on the entire Medical Marihuana Access Program (MMAP), has been consistent since the program was initiated. We remain deeply concerned that, though the program has made a physician's authorization the key to a patient's access to medical marijuana, physicians and other health professionals have little to no evidence-based information about its use as medical therapy. As our President, Dr. Anna Reid, noted in December, the regulatory proposals are "equivalent to asking doctors to prescribe while blindfolded." Health Canada gives two reasons for its regulatory proposal: first, to address concerns about the safety of home grow-ops; and secondly, to reduce the cost of administering a program that has proven more popular than anticipated. Neither of these reasons is related to improving patient care or advancing our clinical knowledge of marijuana as a medical treatment. CMA understands that many Canadians suffer constant pain from chronic or terminal illnesses and are searching for anything that will provide relief. We know that some patients find that use of marijuana relieves their symptoms and that some health professionals also believe it has therapeutic value. However, we are concerned that these claims remain inadequately supported by scientific research. Controlled studies of medical marijuana have been published recently and some have shown benefits. However, these studies are few in number, of short duration and with small samples, and knowledgeable clinicians say that more research is required. In addition, some say that marijuana has become more potent since it became a popular recreational drug in the 1960s, though others disagree,1 and growers say they can develop strains tailored to the needs of individual medical users.2 Though these claims are part of the popular understanding of medical marijuana, there is no scientifically valid evidence that supports them. What Physicians Have Told Us In May 2012, CMA surveyed members of its "e-panel" of physicians to obtain more information about their attitudes and needs regarding medical marijuana. The survey received just over 600 responses out of more than 2,200, for a 27 per cent response rate. Among the findings: * About 70 per cent of respondents had been asked by patients to approve medical marijuana, though only four per cent said they were asked to do so "often." Of those who were asked, one-third reported that they "never" supported such requests, while 18 per cent "usually" did so. * 64 per cent of respondents were concerned that patients who request medical marijuana may actually be using it for recreational purposes; * A large majority of respondents said they would find more information on the appropriate use of marijuana for medicinal purposes, and on its therapeutic benefits and risks, useful or very useful. * About two-thirds agreed or strongly agreed that they would feel more comfortable if: o Physicians wishing to use medical marijuana in their practices were required to undergo special training and licensing; and, o Health Canada offered them protection from liability. * In open-ended questions, some respondents expressed favourable views on marijuana's medical benefits. However, a larger number expressed concern over its harmful effects, such as: psychotic symptoms, especially in younger people; potential for addiction and dependency; and the risks to lung health from smoking it or any other substance. Marijuana is Not Like Other Therapeutic Products Theoretically, marijuana, when used for medicinal purposes, is regulated under the Food and Drugs Act. However, because of its unique legal position, Health Canada has exempted it from the applications of the Act and its regulations, and it has not undergone the scrutiny of benefits and risks required of other therapeutic products approved for use in Canada, be they prescription-only or over-the-counter. According to the Food and Drugs Act (FDA), all drugs requiring a health professional's authorization must be approved for use by Health Canada, based on evidence of effectiveness obtained from controlled clinical trials, which remain the best currently available means of validating knowledge. In addition, Health Canada has a system of post-market surveillance to keep track of problems that arise with prescription drugs in real-world use. Though the CMA has been critical of some aspects of this system,3 we acknowledge that it has added to our body of knowledge on drug safety risks. If marijuana were not an illegal product, it might have been assessed through some form of pre-approval and post-approval surveillance. By exempting marijuana from the FDA's pre-approval and post-approval requirements, Health Canada has lost an opportunity to improve our knowledge of the drug's therapeutic uses. The Views of Canadians A recent online survey conducted by Ipsos-Reid on behalf of the CMA provides insight into the views of Canadians on Health Canada's regulatory proposal.4 The survey found: * 92 per cent of Canadians think it is very or somewhat important that Health Canada not remove itself from its oversight role until guidelines are put in place for physicians; * 90 per cent believe that research on the effectiveness, safety and risks of medical marijuana is needed before Health Canada removes itself from the authorization process; * 85 per cent of Canadians believe medical marijuana should be subject to the same rigorous testing and approval standards as other medicines; * 79 per cent agree that Health Canada has a responsibility to maintain its role in the authorization process.; The Role of the Physician The CMA cannot with certainty predict the consequences of these regulatory changes for the practising physician (and, if the regulations are approved, for the nurse practitioner as well). However, we have several causes for concern: * The gatekeeper role of health professionals: The most significant change, from our point of view, is that Health Canada is removing itself from the approval process, making it a transaction between the patient, the practitioner and the licensed producer. In addition, Section 125 of the regulatory proposal would reduce the content of the authorization form, from its current two-page format to a brief document requiring little more information than is required for a standard medical prescription. We are concerned that these changes will put an even greater onus on physicians than do the current regulations. The CMA agrees with the Federation of Medical Regulatory Authorities that the lack of evidence to support the use of marijuana for medicinal purposes signifies that it is not a medical intervention. In our opinion, putting physicians in the role of gatekeeper for access to marijuana is inappropriate and may be an abdication of responsibility on Health Canada's part.5 Such a move could increase physicians' liability risk and put them at odds with their medical regulatory authorities, which have no choice but to continue to advise physicians to exercise extreme caution. The CMA believes, as does the Canadian Medical Protective Association, that a drug's approval under the Food and Drugs Act does not impose a legal obligation on physicians or nurse practitioners to authorize its use if, in their judgment, it is clinically inappropriate. The Ontario Court of Appeal reached a similar decision recently in the case of R. v. Mernagh. * Protection of Physician Privacy. Under the proposed regulations, health information and physician data - such as the patient's name and date of birth, or the provider's licence number - will be collected by licensed producers who may not be subject to the same regulatory and privacy constraints as the health care sector. The draft regulations also indicate that the licensed producer is expected to confirm that the data on the "medical document" is correct and complete - in other words, health providers who authorize medical marijuana use will receive correspondence from the producer. We are very concerned about the risks this would pose to the privacy of patient and health care provider information. We believe Health Canada should conduct a privacy impact assessment of its proposed regulations or, if it has done so, to share the results. * Physicians as Dispensers. Section 124 of the proposed regulations would allow authorized health care practitioners to "sell, provide or administer dried marijuana." This is contrary to Article 46 of the CMA Guidelines for Physicians in Interactions with Industry, which states that "Physicians should not dispense pharmaceuticals or other products unless they can demonstrate that these cannot be provided by an appropriate other party."6 * Other possible consequences. We are also concerned about other potential consequences of the regulatory changes. Will more people go to health professionals requesting an authorization, on the assumption that the new regulations will make it easier to get? Will entrepreneurs seize the opportunity to establish "dispensaries" whose intended clientele are not those in legitimate medical need, as recent news stories have suggested?7 Will medical marijuana advocates put increased pressure on physicians to authorize its use? Meeting the Information Needs of Physicians In one respect, Health Canada has listened to physicians' concerns regarding the lack of evidence about medical marijuana, and acknowledged the need to remedy this problem. Though it is not addressed in the draft regulations, Health Canada has established an Expert Advisory Committee (EAC) to help provide comprehensive information to health professionals. The CMA has attended meetings of this committee in an observer capacity, suggested the names of practising physicians to serve as members, and made a presentation to the committee at its meeting in November 2012. If the EAC follows the CMA's suggestions, it will consider actively supporting the following activities: * Funding of scientific research on the clinical risks and benefits of marijuana; * Knowledge translation activities to convert this research into accessible, user-friendly tools for education and practice; * Development of best practice guidelines in the therapeutic use of marijuana. Though this guideline would of necessity be based on "C" level evidence, it would be an improvement on what now exists; and * Support for a compulsory training and licensing program for physicians wanting to authorize marijuana for medicinal purposes. The CMA believes that the EAC should be given the mandate and resources to undertake these activities. Conclusion Health Canada's stated mission is to help the people of Canada maintain and improve their health. The CMA believes that if Health Canada wants its Medical Marihuana Access Program to serve this mission, it should not withdraw from administering the program, leaving it to health professionals working within a large knowledge gap. Rather, it should support solid research into the use of marijuana as medication and make a commitment to share this knowledge with the health professional community and to support best clinical practices. 1 Bonsor K: "How marijuana works". Accessed at http://science.howstuffworks.com/marijuana5.htm 2 http://medicalmarijuana.ca/learning-center/marijuana-strains 3 CMA Submission to the House of Commons Standing Committee on Health: Post-Market Surveillance of Prescription Drugs (February 28, 2008). Accessed at http://www.cma.ca/multimedia/CMA/Content_Images/Inside_cma/Submissions/2008/brief-drug-en-08.pdf 4 Online survey of 1,000 Canadians the week of Feb. 24, 2013 conducted by Ipsos-Reid. Summary report of the poll can be accessed at www.cma.ca/advocacy/cma-media-centre. 5 Letter to Health Canada from Yves Robert, MD, President of the Federation of Medical Regulatory Authorities of Canada, November 4, 2011. 6 CMA. 2004. Guidelines for Physicians in Interactions with Industry. Guideline can be accessed online: http://policybase.cma.ca/dbtw-wpd/Policypdf/PD08-01.pdf 7 Lee J. "Ross Rebagliati to Open medical marijuana franchise." Vancouver Sun. January 23, 2013. Accessed at http://www.vancouversun.com/health/Ross+Rebagliati+open+medical+marijuana+franchise/7860946/story.html
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CMA Submission: The need for health infrastructure in Canada

https://policybase.cma.ca/en/permalink/policy10705
Date
2013-03-18
Topics
Health systems, system funding and performance
  2 documents  
Policy Type
Parliamentary submission
Date
2013-03-18
Topics
Health systems, system funding and performance
Text
In its Economic Action Plan 2011(Budget 2011), the Government of Canada committed to consult stakeholders on the next long-term plan for public infrastructure which would extend beyond the expiry of the current framework, the Building Canada Plan, on March 31, 2014. The CMA’s 2012-13 pre-budget brief recommends that the federal government ensure health infrastructure is eligible for funding as part of the next long-term plan for public infrastructure. The purpose of which is to address a particular health infrastructure deficit that is preventing the optimization of health care resources and exacerbating wait times and ensure that Canadian communities are able to meet the current and emerging care needs of their older seniors. The CMA has prepared this brief to provide further details on the scope of the proposed infrastructure funding for the health sector, its rationale and economic benefit, and how it could be applied. 2. Overview of proposal The CMA recommends that the federal government ensure health sector infrastructure for long-term care facilities is eligible for funding under the next long-term infrastructure program. This funding should be applicable both for new capital projects and for renovating/retrofitting existing facilities. This recommendation, and the recognition of the need for additional capacity in the long-term care sector, is part of a pan-Canadian approach to redirect alternate level of care patients from hospitals to homes, communities and long-term care facilities, where they can receive more appropriate care at a lower cost. It costs $842 per day for a hospital bed versus $126 per day for a long-term care bed. If ALC patients were moved to more appropriate care settings, in this case, from hospital to long-term care, this would save the health care system about $1.4 billion a year. For the purposes of this recommendation, long-term care facilities include long-term care residential homes, assisted living units and other types of innovative residential models that ensure residents are in the setting most appropriate to their needs. The long-term care sector is facing significant change due to increasing numbers of older seniors and their increasingly complex care needs. These pressures not only relate to the construction of new facilities but apply to the need to maintain existing facilities, including retrofitting to meet higher regulatory requirements, as well as struggling to meet higher care needs of their increasingly elderly population. The CMA’s recommendation to ensure that long-term care infrastructure qualify under the next long-term infrastructure plan is one component of the association’s Health Care Transformation initiative and would support a pan-Canadian approach for continuing care, which would integrate home care and facility-based long-term, respite and palliative care services fully within the health care system. 3. Rationale The rationale behind the recommendation for health infrastructure to qualify for the next long-term infrastructure plan is based primarily on the care needs of Canada’s growing seniors’ population and its impact on Canada’s health care system. Communities across Canada face a common problem of a lack of resources to properly meet the housing and care needs of their seniors population. Demographic trends indicate this problem will only intensify. However, as demonstrated below, investing in seniors can generate substantial direct and indirect economic benefits. Meeting the needs of Canada’s growing seniors population and their changing care needs While all advanced countries are expected to age over the coming decades, the Canadian population is projected to age more rapidly than that of most other OECD countries, according to a recent report from Finance Canada. Statistics Canada reports the number of seniors (65+) in Canada is projected to increase from 4.2 million in 2005 to 9.8 million in 2036, with their share of the total population increasing from 13.2 per cent to 24.5 per cent. The number and proportion of older seniors – those 75 and older – are expected to increase significantly as well. Ontario’s population of people aged 75 and up is expected to grow by almost 30 per cent between 2012 and 2021. According to Statistics Canada’s medium-growth population projection scenario, the population aged 80 years or over will increase 2.6 times by 2036 – to 3.3 million persons. While the rate of residency in long-term care facilities among seniors has been declining, as the aging of Canada’s population accelerates, the demand for residential care will nonetheless increase significantly over the near term due to higher numbers of elderly seniors. Not only is the size of the elderly population increasing, but their health needs are changing too, particularly among those requiring residential care. Long-term care residents are older today than in previous years and have more complex health needs than ever before. A Canadian Institute for Health Information (CIHI) comparison of home care clients and seniors who are living in residential care found that “seniors in residential care were more likely to require extensive assistance with activities of daily living (ADLs), such as bathing and toileting (74 per cent versus 18 per cent). They were also more likely to have moderate to severe cognitive impairment (60 per cent versus 14 per cent). The number of residents with dementia is expected to increase. In 2011, 747,000 Canadians were living with cognitive impairment, including dementia – that’s 14.9 per cent of Canadians 65 and older. By 2031, this figure will increase to 1.4 million. At the request of the House of Commons Finance Committee, the CMA submitted a national dementia strategy. This proposal to fund long-term care facilities supports such a strategy. Many existing residential facilities are poorly equipped to meet the care needs of their residents, which are more complex now than when these facilities were originally built. For example, many facilities do not meet current building safety standards and the limited provincial and municipal funding available is usually insufficient to bring them up to code. Also, there is a lack of units with shared space to better support residents with dementia, as well as a shortage of appropriate units to care for residents who are disabled or obese. Renovations are also required to make better use of long-term care beds for other purposes such as providing short-stay respite care or transitional care. According to the Ontario Association of Community Care Access Centres, the lack of physical facilities necessary for care was the reason most often given by homes for declining to admit a long-term care wait-list client. Opportunity to improve health care efficiency and reallocate existing program spending We recognize that addressing the current gap in long-term care residency options is only one strategy to improve the effectiveness of Canada’s health care system. However, we believe it is a critical component of an integrated continuum of care strategy that provides for increased home and community supports. Improving options for seniors will have a positive cascading effect on many other elements of the system. Not only will seniors reside in more appropriate and safer settings but acute care resources will be better used. Consider that about 45 per cent of provincial and territorial governments’ health care spending in 2009 went toward those 65 years and older, while this group constituted only 14 per cent of the population. A major issue facing Canada’s health care system is the high number of alternate level of care patients (ALC) who occupy acute care beds. ALC patients are those who have completed the acute care phase of their treatment but remain in an acute care bed or who are admitted into a hospital bed due to the lack of a more appropriate care setting. In most cases, these people would be better served living in their own home with the appropriate level of supports or in a long-term care residence. The high number of ALC patients in hospitals is a problem experienced across the country. The total number of hospital bed days for ALC patients in 2007-2008 (latest figures) was 1.7 million. Furthermore, the lack of options for ALC patients also contributes to a high percentage of these patients being readmitted to hospital within 30 days of discharge (see Appendix A). According to CIHI figures, 85 per cent of ALC patients were older than age 65, with almost half waiting for placement in long-term care. A high percentage of ALC patients suffer from dementia. It costs $842 per day for a hospital bed versus $126 per day for a long-term care bed. If ALC patients were moved to more appropriate care settings, in this case, from hospital to long-term care, this would save the health care system about $1.4 billion a year. The presence of ALC patients in hospitals also lead to longer surgical wait times and longer delays in the emergency department as acute care beds remain unavailable. In fact, the Wait Time Alliance – an alliance of 14 national medical organizations and specialties – has said “the most important action to improve timely access to specialty care for Canadians is by addressing the ALC issue.” Available wait-time data (See Appendix B) for long-term care show that wait times to access a long-term care bed can often be measured in, not months or days, but years. Data from Ontario for 2004 to 2008 found that less than 50 per cent of seniors with high or very high needs were placed in a long-term care facility within a year of being put on a wait list. The average wait time for placement in Quebec is 13 months (ranging between five months and four years). The most recent report by Ontario’s Auditor General found that 15 per cent of patients on the provincial wait list for long-term care passed away while waiting for placement. The wait to access residential care can vary immensely depending on where one resides. Often the wait is longer for residents in small, rural and northern communities. Sometimes the only route to securing a placement is for the resident to move to a facility in another community. Investment required According to Statistics Canada, there are 261,945 long-term care beds in operation in Canada (latest figures, 2009/10.) How many residential beds will be required in the future to meet the growing number of elderly seniors? The Conference Board of Canada has produced a bed forecast tied to the growth of the population aged 75 and over and based on a decreased bed ratio demand of 0.59 per cent per year to reflect the greater shift to community-based services and supportive housing options being advanced at the provincial level. This bed ratio demand is described by the Canadian Healthcare Association as representing a modest shift from the current reliance on long-term care to community services. Based on these assumptions, it has been estimated that Canada will require an average of 10,535 new beds per year over the next 35 years, for a total of 637,721 beds by 2047. Demand would vary over the 35-year period, peaking between 2022 and 2040 (See Appendix C). The five-year projection for beds is as follows: Table 1: Projected shortage in long-term care beds, 2014 to 2019 [SEE PDF FOR CORRECT DISPLAY OF TABLE] Year Number of additional beds required 2014 4,331 2015 4,715 2016 6,028 2017 6,604 2018 8,015 Projected 5-year shortage 29,693 As shown, there is a projected shortage of 29,693 beds over the next five years. For the purposes of longer-term planning, the gap in beds required for the following five-year period (2019-2023) is as follows: Table 2: Projected shortage in long-term care beds, 2019 to 2023 [SEE PDF FOR CORRECT DISPLAY OF TABLE] Year Number of additional beds required 2019 8,656 2020 8,910 2021 10,316 2022 14,888 2023 14,151 As previously outlined, the rising gap in bed numbers is affected by the increased numbers in people aged 75 and older anticipated over the next 35 years. The estimated cost to construct 10,535 beds (the average number of beds required to be built per year from 2013 to 2047) is $2.8 billion, based on a cost estimate of $269,000 per bed. This figure could include both public and private spending. The purpose of this bed projection is to provide a sense of the immense challenge Canada faces in addressing the needs of a vulnerable segment of its older seniors population. It is important to note that this forecast does not include the significant investments required to renovate and retrofit the existing stock of residential facilities, not only to meet the current standards but to effectively respond to the complex care needs of residents requiring long-term care today and in the future. Similarly, the potential facility capacity expansions through retrofit or renovation are not included. Moreover, innovative capital investment in residential facilities can provide opportunities for their greater use by other members of the community. They can, for example, provide short-stay respite to support families and convalescent care programs such as those found in the United Kingdom. We also recognize that supportive housing and healthy aging programming are important components of an integrated solution to the ALC issue and to ensuring seniors reside in the most appropriate place. 4. How the funding would work Health infrastructure could qualify under a communities component of the next long-term infrastructure plan where this federal funding can be leveraged with provincial and and / or municipal investment (e.g. 1/3 federal component matched by + 2/3 provincial and / or municipal). This funding allocation could also include the use of public-private partnership models. Investing in Canada’s Continuing Care Sector Provides a Wide Range of Economic Benefits Construction of new residential care models and renovating/retrofitting existing facilities will provide significant economic opportunities for many communities across Canada (See Appendix E for detailed figures). Based on Conference Board of Canada estimates, the construction and maintenance of 10,535 long-term care beds (the average number of new beds needed per year from 2013 to 2047) will yield direct economic benefits on an annual basis that include $1.23 billion contribution to GDP and 14,141 high value jobs during the capital investment phase and $637 million contribution to GDP and 11,604 high value jobs during the facility operation phase (based on an average annual capital investment); and close the significant gap between the projected long-term care bed shortages and current planned investment. When indirect economic contributions are included, the total estimated annual contribution to Canada’s GDP reaches almost $3 billion, yielding 37,528 new jobs (construction, care providers and other sectors). Details on these economic benefits are provided in Appendix F, but a summary is presented below: Table 3: Average annual total economic contribution of new residential care facilities [SEE PDF FOR CORRECT DISPLAY OF TABLE] (10, 535 new beds per year at market prices) GDP (in 2013 $millions) Number of jobs created Average direct contribution to GDP of investing in new facilities (construction) $1,225.4 14,141 Average direct contribution to GDP of operating the new facilities $637.0 11,604 Average indirect contribution to GDP of investing in new facilities (construction) $969.9 10,115 Average indirect contribution to GDP of operating the new facilities $135.4 1,667 TOTAL (both direct and indirect) $2,968 37,528 For every 100 jobs created in the construction of long-term care facilities, an additional 72 jobs would be created in other sectors, while for every 100 jobs created in the long-term care sector, 14 jobs would be created in other sectors. The numbers provided above reflect the annual average contribution. On a time specific level, covering the five-year period between 2014 and 2018, an estimated 167,840 jobs would be created, based on the construction of 29,693 new beds. Another important economic benefit is the return in government revenues. The increase in construction and operating spending per average year will provide over $425 million in federal government revenues and over $370 million in provincial revenues (See Appendix G). As previously identified, an improved stock of long-term care beds will provide many other economic spinoffs, including savings in health care costs that can be reallocated to better meet Canadians’ health care needs and to provide greater support for families in their role as caregivers. Without adequate provision of long-term care resources, Canada’s labour force may experience a productivity drag through increased leaves and absenteeism to care for elderly relatives. 5. Conclusion The aging of our population touches all Canadians – from seniors who need the services to families who serve as caregivers and/or contribute financially to the care of aging relatives. Recent data show that 32 per cent of caregivers who provide more than 21 hours of care per week report distress in their role – four times the proportion of distressed caregivers who provide less than 10 hours of informal care per week. The federal government has a long history of allocating capital investment in the health sector. Previous examples include the Hospitals and Construction Grants Program in 1948, the Health Resources Fund established in 1966 and, more recently, the funding of capital projects at research hospitals under the Canada Foundation for Innovation Leading Edge and New Initiatives Funds in 2012. All communities across Canada are strongly affected by the social and health care needs of their growing senior and long-term care populations (see Appendix H for a sample of recent news stories.) Federal capital investment will help narrow the significant gap between the projected long-term care bed shortages and current planned investment in the area of residential care facilities. Further, it would have a cascading effect leading to a more effective and efficient Canadian health care system. Recommendation The Canadian Medical Association recommends that the federal government allocate $2.3 billion over a five-year period in the next long-term infrastructure plan for the construction, renovation and retrofitting of long-term care facilities. Long-term care facilities include long-term care residential homes, assisted living units and other types of innovative residential models that ensure residents are in the most care setting most appropriate to their needs. This funding could be delivered as part of the communities component of the next long-term infrastructure plan. 1 Department of Finance Canada. Economic and fiscal implications of Canada's aging population. Ottawa, 2012. 2 Office of the Auditor General of Ontario. 2012 annual report. 2012. http://www.auditor.on.ca/en/reports_en/en12/2012ar_en.pdf. Accessed 01/30/13. 3 Statistics Canada. Population projections for Canada, provinces and territories 2009 to 2036. June 2010. 91-520-X 4 Alzheimer's Society Ontario. Facts about dementia. http://www.alzheimer.ca/en/on/About-dementia/Dementias/What-is-dementia/Facts-about-dementia. Accessed 01/30/13. 5 Canadian Medical Association. Toward a Dementia Strategy for Canada. Ottawa, 2013. http://www.cma.ca/submissions-to-government Accessed 01/30/13. 6 Ontario Association of Non-Profit Homes and Services for Seniors. Proposals for the Ontario Budget. Fiscal Year 2012-13. March 2012. 7 David Walker. Caring for our aging population and addressing alternate level of care. Report Submitted to the Minister of Health and Long-Term Care. June 30, 2011. Toronto. 8 Long Term Care Innovation Expert Panel. Why not now? A bold, five-year strategy for innovating Ontario's system of care for older adults. March 2012. http://www.oltca.com/axiom/DailyNews/2012/June/LTCIEPFullREport_web_jun6.pdf. Accessed 01/30/13. 9 For an example of an integrated continuum of post-acute care model see CARP, One Patient: CARP's Care Continuum. http://www.carp.ca/wp-content/uploads/2013/01/One-Patient-Brief-Updated-Oct-18.pdf. Accessed 01/30/13. 10 Canadian Life and Health Insurance Association. Improving the accessibility, quality and sustainability of long-term care in Canada. CLHIA Report on Long-Term Care Policy. June 2012. 11 Wait Time Alliance. Time out! Report card on wait times in Canada. 2011. http://www.waittimealliance.ca/media/2011reportcard/WTA2011-reportcard_e.pdf. Accessed 01/30/13. 12 Correspondence with officials from Bruyère Continuing Care in Ottawa. January 2013. 13 Canadian Institute for Health Information. Health care in Canada, 2011 2011. . 14 Rapport du Vérificateur général du Québec à l'Assemblée nationale pour l'année 2012-2013. 15 Office of the Auditor General of Ontario. 2012 annual report. 2012. 16 The .59 per cent decrease in bed ratio is presented as Scenario 2 in Lazurko, M. and Hearn, B. Canadian Continuing Care Scenarios 1999-2041, KPMG Final Project Report to FPT Advisory Committee on Health Services, Ottawa. 2000. Presented in Canadian Healthcare Association, New Directions for Facility-Based Long-Term Care. 2009. http://www.cha.ca/wp-content/uploads/2012/11/CHA_LTC_9-22-09_eng.pdf. Accessed 01/30/13. 17 Canadian Institute for Health Information, Health Care in Canada, 2011.
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Healthier Generations for a Prosperous Economy: Canadian Medical Association 2013-2014 pre-budget consultation submission to the Standing Committee on Finance

https://policybase.cma.ca/en/permalink/policy11028
Date
2013-11-06
Topics
Health systems, system funding and performance
  1 document  
Policy Type
Parliamentary submission
Date
2013-11-06
Topics
Health systems, system funding and performance
Text
The Canadian Medical Association (CMA) submission to the House of Commons Standing Committee on Finance discusses the important role of the federal government in ensuring Canada's health care system is cost-effective, accountable and accessible in order to support the country's economic advantage. As in other leading industrialized countries, the federal government has an important role in the effective allocation of health-related resources and the health outcomes of Canadians. The purpose of this brief is to provide decision-makers with recommendations on areas within existing federal mandates in which the Government of Canada can contribute to advancing Health Care Transformation and improving the health of Canadians and the health care system - an issue Canadians consistently rank as their top concern. These recommendations focus on federal investment in a seniors care strategy, the social determinants of health and health sector innovation and productivity. Summary of Recommendations Recommendation # 1 The CMA recommends that the Government of Canada collaborate with provincial, territorial and municipal governments to establish and invest in a pan-Canadian strategy for seniors care. Recommendation # 2 The CMA recommends that funding for health infrastructure qualify under the next Building Canada Plan to support the construction, renovation and retrofitting of long-term care facilities. Recommendation # 3 The CMA recommends that the Government of Canada invest $25 million per year over five years toward a pan-Canadian dementia strategy. Recommendation # 4 The CMA recommends that the Government of Canada establish a Canada-wide injury prevention strategy to identify successful programs and facilitate the sharing of knowledge and resources that will enable them to be disseminated nationwide. Recommendation # 5 In support of a pan-Canadian palliative care strategy, CMA recommends that the Government of Canada undertake research to identify successful programs and facilitate the sharing of knowledge and resources so that they can be replicated nationwide. Recommendation # 6 The CMA recommends that the Government of Canada establish health as a required consideration in the Cabinet decision-making process. Recommendation # 7 The CMA recommends that the federal government, in consultation with the provincial and territorial governments, health care providers, the life and health insurance industry and the public, establish a program of comprehensive prescription drug coverage to be administered through reimbursement of provincial/territorial and private prescription drug plans to ensure that all Canadians have access to medically necessary drug therapies. Recommendation #8 The CMA recommends that the Government of Canada establish and invest in a comprehensive strategy for improving the health of aboriginal peoples that involves a partnership among governments, non-governmental organizations, and First Nations, Métis and Inuit communities. Recommendation #9 The CMA recommends that the federal government rescind changes made to the Interim Federal Health Program until appropriate consultation and program review occur. Introduction As in other leading industrialized countries, the federal government has an important stewardship role in the effective allocation of health-related resources and health outcomes of Canadians; this is central to a productive workforce and a strong economy. This brief provides tangible, actionable recommendations on how the federal government can contribute to transforming Canada's health care system and improving the health of Canadians. The focus is on three critical areas for federal investment: a senior's care strategy; the social determinants of health and health equity; and health sector innovation and productivity. The recommendations in these areas are aligned with the CMA's Health Care Transformation initiative, the principles of which have been endorsed by 134 organizations, representing millions of Canadians.1 1. Contributing to a National Seniors Care Strategy Issue: Engagement and investment from the Government of Canada is essential to meet the increasing needs of Canada's aging population. It is expected that by 2036, a quarter of Canada's population will be over the age of 65. The number of people in the oldest age group - the age group most likely to experience serious health problems - is expected to increase at an even faster rate: Statistics Canada predicts that in 2036 there will be 2.6 times as many people 80 years old or over as there are today. 2 Already, patients age 65 or older account for nearly half of Canada's health care spending (45% in 2009).3 Canada's governments are rightly concerned about how to provide sustainable, high-quality health care to all Canadians as the country's population ages. The Canadian public shares this concern. In an Ipsos Reid public opinion survey done for CMA in July 2013, 83% of respondents said they were concerned about their health care in their retirement years. The CMA recommends the Government of Canada collaborate with provincial, territorial and municipal governments to establish and invest in a pan-Canadian strategy for seniors care. As elaborated below, the CMA recommends that this strategy include adequate investment in long-term care, home care, as well as palliative and end-of-life care to ensure access to the continuum of care. In addition, there should be investment in programs to address age-related health risks of particular concern, notably dementia and injuries due to falls. These areas, including recommendations for immediate investment by the Government of Canada are discussed in greater detail below. i) Ensure continuing care qualifies under the new Building Canada Plan4 Addressing the gap in long-term care residency options is a critical component of an integrated continuum of care strategy that provides for increased home and community supports. Communities across Canada face a common problem of a lack of resources to properly meet the housing and care needs of their seniors population. While the percentage of older Canadians who live in long-term care facilities is declining, as the aging of Canada's population accelerates, the demand for residential care will increase significantly. The current wait times in the long-term care sector are contributing to the high number of alternate level of care patients (ALC) who occupy acute care beds; a major issue facing Canada's health care system. At more than 3 million ALC days, the high number of ALC patients in hospitals is a problem experienced across the country.5 Based on the difference between the average cost of care in hospital versus long-term care, if ALC patients were moved from hospital to long-term care this would save the health care system about $2.3 billion a year. The Conference Board of Canada has produced a bed forecast tied to the growth of the population aged 75 and over and based on a decreased bed ratio demand to reflect the greater shift to community-based services and supportive housing options being advanced at the provincial level. Based on these assumptions, over the five-year period ending in 2018, an estimated 29,693 additional beds will be required, representing a pan-Canadian investment of $7.98 billion. It is evident that the existing and planned schedule of provincial projects will be unable to meet the estimated demand. Based on a review of provincial budgets, current capital investments already committed at the provincial level represent at least $861 million allocated over the next 10 years, representing approximately 3,200 new beds. The shortfall between our projected gap (29,693) and our calculation of provincial committed projects is 26,493 beds, at a cost of $7.1 billion. The CMA recommends funding for health infrastructure qualify under the next Building Canada Plan to support the construction, renovation and retrofitting of long-term care facilities. ii) Invest in a national dementia strategy About three quarters of a million Canadians currently live with Alzheimer's disease and other forms of dementia and cognitive impairment. Our knowledge of how to prevent dementia is limited. We do not fully understand its causes and there is no known cure. People with dementia may live for years with the condition and will eventually need round-the-clock care. Dementia currently costs Canada roughly $33 billion per year, both in direct health care expenses and in indirect costs such as lost earnings of the patient's caregivers. Given that the prevalence of dementia will unquestionably increase with the aging of Canada's population, the Alzheimer Society of Canada predicts that by 2040 the annual cost to the country will reach $293 billion. 6 The CMA recommends the Government of Canada invest $25 million per year over five years toward a pan-Canadian dementia strategy. This $25 million investment would be distributed as follows: - $10 million to support research on key aspects of dementia, including prevention, treatment options, and improving quality of life. - $10 million in increased support for informal caregivers. This includes both financial support and programs to relieve the stress experienced by caregivers such as education, skill-building and provision of respite care and other support services. - $5 million toward knowledge transfer, dissemination of best practices and education and training to support: - an integrated system of care facilitated by effective co-ordination and case management - a strengthened dementia workforce, which includes development of an adequate supply of specialists and improving diagnosis and treatment capabilities of all frontline health professionals. iii) Establish an injury prevention strategy for Canada Falls are the primary cause of injury among older Canadians; they account for 40% of admissions to nursing homes, 85% of injury-related hospitalizations and nearly 90% of all hip fractures. The Public Health Agency of Canada estimates that injuries among seniors cost Canada approximately $2 billion a year in direct health care costs.7 They are also a major contributor to alternate level of care patients in hospitals given the shortages in the home care, rehabilitation or long-term care sector. Falls can be prevented, and a growing number of regional programs across Canada are identifying and modifying risk factors for falls in their client population specific to seniors. The CMA recommends the Government of Canada establish a Canada-wide injury prevention strategy to identify successful programs and facilitate the sharing of knowledge and resources that will enable them to be disseminated nationwide. iv) Support the expansion of palliative care in Canada Experts believe that a palliative-care approach - when combined with treatment - leads to better outcomes by reducing the length of stay in hospitals and the number of deaths in acute care. In Canada, according to Canadian Institute for Health Information (CIHI), only 16% to 30% of patients have access to hospice palliative and end-of-life services.8 These services tend to be delivered in institutional settings on a tertiary or intensive model; and like falls prevention programs, they tend to be delivered locally. The CMA strongly supports an approach that integrates palliative care with chronic care in the community, earlier in the patient's condition. In support of a pan-Canadian palliative care strategy, CMA recommends that the Government of Canada undertake research to identify successful programs and facilitate the sharing of knowledge and resources so that they can be replicated nationwide. 2. Social Determinants of Health and Health Equity Issue: Addressing the social and economic determinants of health is critical to ensuring improved health outcomes for Canadians. Research suggests that 15% of population health is determined by biology and genetics, 10% by physical environments, 25% by the actions of the health care system, with 50% being determined by our social and economic environment.9 While a strong health care system is vital, changes to our health system alone will not be sufficient to improve health outcomes or reduce the disparities that currently exist in disease burden and health risks. Addressing the social and economic determinants of health has an important role in ensuring the sustainability of the health care system. It is estimated that one in five dollars spent on health care in Canada can be attributed to socio-economic disparities. These are the avoidable health costs linked to issues such as poverty, poor housing, health illiteracy, and unemployment among others. In 2012 health care dollars, these potentially avoided costs represented $40 billion in public spending. 10 Many of these social and economic determinants fall within the jurisdiction of the federal government such as tax policy. The section below elaborates on how the federal government can contribute to addressing the social determinants of health and reduce health inequity. i) Ensure healthy public policy Recognizing that the social and economic determinants of health have an important role in the health of Canadians, the policy decision-making process across departments must include a consideration of health. This can be accomplished by establishing health as a required consideration in the Cabinet decision-making process to ensure that the health promoting aspects of policies and programs are strengthened while potential negative impacts can be avoided or mitigated. In short it will ensure healthy public policy. Not only could health care costs be reduced, but ensuring healthy public policy has the potential to provide significant benefits for the Canadian economy. Healthier people lose fewer days of work and contribute to overall economic productivity.11 The CMA recommends the Government of Canada establish health as a required consideration in the Cabinet decision-making process. ii) Address access to prescription pharmaceuticals Universal access to prescription drugs is widely acknowledged as part of the "unfinished business" of Medicare in Canada. What exists today is a public-private mix of funding for prescription drugs. As of 2011, CIHI has estimated that 44% of prescription drug expenditures were public, 38% were paid for by private insurance and 18% were paid out of pocket.12 At present, Quebec is the only province to have universal prescription drug coverage for its residents, either through private insurance or a public plan, introduced in 1997. Of serious concern, there is evidence of wide variability in levels of drug coverage across Canada. According to Statistics Canada, almost one in 10 (7.6%) of households spent greater than 3% of after tax income on prescription drugs in 2008. Across provinces, this ranged from 4.6% in Alberta and 4.7% in Ontario to 13.3% in PEI.13 Further, 10% of the Canadian respondents to the Commonwealth Fund's 2010 International Health Policy Survey said they had either not filled a prescription or skipped doses because of cost issues.14 Research conducted by Ipsos Reid in 2012 showed that almost one in five households (18%) does not have supplementary insurance coverage that would cover prescription drugs.15 Statistics Canada's 2011 Survey of Household spending clearly shows the burden on seniors and low-income Canadians. Households headed by a person aged 65 and older spent 50% more, on average, on prescription drugs when compared with all households.16 Those in the lowest income groups are three times less likely to fill needed prescriptions.17 This has consequences not only for their health but for the health care system as well. Individuals who are unable to manage treatable conditions often end up hospitalized at a great cost to the health care system. The CMA recommends the federal government, in consultation with the provincial and territorial governments, health care providers, the life and health insurance industry and the public, establish a program of comprehensive prescription drug coverage to be administered through reimbursement of provincial/territorial and private prescription drug plans to ensure that all Canadians have access to medically necessary drug therapies. iii) Address health disparities experienced by First Nations, Métis and Inuit During a cross-country town hall consultation in Winnipeg on Feb. 4, 2013, the CMA heard about the adverse effects of inequalities and disparities and their impact on the health and wellness of First Nations, Métis and Inuit in Canada. As elaborated below, the inequalities and disparities in the social determinants of health can have a significant impact on the health of the population. First Nations, Métis and Inuit in Canada experience higher rates of chronic disease, addictions, mental illness and childhood abuse. The Health Council of Canada reports that the crude mortality rate for First Nations is higher and life expectancy lower than the Canadian average.18 In 2009, UNICEF reported that the infant mortality rate for First Nations on reserve was seven times higher than the national average.19 First Nations, Métis and Inuit peoples suffer much higher rates of infectious and chronic diseases. Tuberculosis rates are six times higher in First Nations populations and 17 times higher in Inuit communities as compared to the rest of Canada.20 Diabetes rates are higher among First Nations, Métis and Inuit peoples - 15.5% vs. just over 4.7% for the non-Aboriginal population,21 and First Nations, Métis and Inuit communities face higher rates of heart and circulatory diseases, respiratory diseases, and mental health disorders.22 Housing is a key area of concern for First Nations, Métis and Inuit. It is estimated that there will be a backlog of 130,000 housing units in First Nations, Métis and Inuit communities between 2010 and 2031, with 44% of existing units needing significant repairs and 18% requiring complete replacement.23 This inadequate housing can lead to serious health problems. The quality of housing stock directly affects health through exposure to lead, mold and other toxins that are harmful to health. Action is needed to develop an appropriate housing strategy for Canada's First Nations, Métis and Inuit that includes consideration of expiring social housing arrangements on and off reserve. Access to health care also plays a role in determining health. This can be a challenge for First Nations, Métis and Inuit. Many live in communities with limited access to health care services, sometimes having to travel hundreds of miles to access care.24 Additionally, there are jurisdictional challenges between federal and provincial delivery of health services. First Nations, Métis and Inuit living in Canada's urban centres also face significant barriers to accessing health care. Further, even when care is available it may not be culturally appropriate. Utilizing the Non-Insured Health Benefits (NIHB) program can be problematic for some First Nations. It is the CMA's understanding that funding constraints can lead to decreased quality of services, treatment delays or even in some cases denial of services. While the federal government has committed to continuing payments for the NIHB program the CMA is aware of concerns with current funding is inadequate to account for the growing native population, the addition of other beneficiaries, and the higher health care utilization as a result of the poor health status of many of Canada's First Nations.25 The CMA recommends the Government of Canada establish and invest in a comprehensive strategy for improving the health of First Nations, Metis and Inuit that involves a partnership among governments, non-governmental organizations, and Aboriginal communities. iv) Restore coverage under the Interim Federal Health Program The CMA, together with other medical, health and social organizations, have recommended that the changes to the Interim Federal Health Program be rescinded until appropriate consultation is undertaken. The purpose of this consultation would be to identify opportunities to achieve the Government of Canada's cost saving objectives while maintaining the scope of health care coverage for the program recipients. To date, this consultation has not occurred. One of the primary rationales for the program changes was an estimated cost savings of $20 million per annum in health care costs covered by the federal government. As evident by the recent statements of provincial health ministers following the Oct. 3 Federal/ Provincial/ Territorial Health Ministers Meeting, these projected cost savings are not likely to be realized. The CMA is concerned that the costs of the program have been downloaded on the provincial health systems, the charitable sector, and other public programs and organizations that provide the uninsured with benefits. Further, there has been significant confusion that has resulted in an increased administrative burden on the health sector following continual changes in this program. The CMA recommends the federal government rescind changes made to the Interim Federal Health Program until appropriate consultation and program review occur. 3. Improving Health Care Productivity and Innovation The CMA supports federal engagement to advance a health sector innovation and productivity framework, the purpose of which would be to support the introduction and expansion of innovation in health technology and processes of delivery to yield better health outcomes and productivity. As part of this framework, the CMA encourages federal focus on accountability measures and health information technology, as elaborated below. i) Accountability mechanism to improve productivity and quality care Despite the importance of the health care sector to Canada's economy and quality of life, it is generally agreed that in health care, Canada is no longer a strong performer relative to similar nations. For instance, OECD Health Data 2012 ranks Canada seventh highest of 34 member states in per capita health care spending, while Canada's health care system continues to rank below most of our comparator countries in terms of performance. 26 According to the latest forecast report by CIHI, public spending on health care was to surpass $200 billion in 2012. According to the OECD, if the Canadian health sector was to become as efficient as the most efficient countries, we could save 2.5% of GDP in public expenditure by 2017.27 The need to improve system performance will only intensify as demand for health care services increases and the system is pressed to effectively manage the rising number of Canadians with chronic diseases. While the provinces and territories have initiated steps to collaborate on the sharing of best practices in health care, federal leadership is necessary to address the overall performance of the health care system in Canada. This includes collaborating with the provinces and territories on the identification of pan-Canadian metrics that link health expenditures to nationally comparable health outcomes and system performance. CIHI does develop and collect data on numerous health indicators and has developed a performance measurement framework with an initial set of indicators coming out in the near future. However, there is currently no pan-Canadian process to set targets and monitor outcomes and system performance, the purpose of which is to demonstrate accountability to Canadians, improve health outcomes and health sector performance. The CMA recommends the federal government engage the provinces and territories in a collaborative process to identify pan-Canadian metrics and measurements that link health expenditures to nationally comparable health outcomes and system performance. ii) Maximizing the value of Electronic Medical Records The digitization of our health care system is central to quality, safety and the continuity of patient care for all Canadians. Canada continues to make progress in the adoption of health information technology (HIT). It is forecast that 70% of physicians will have an electronic medical record (EMR) system in place by 2014. Almost 90% of the most common radiology examinations and reports in Canada's acute care hospitals are now digital, up from approximately 38% only six years ago. However, there is still a long way to go in order to share information more effectively among caregivers, enable patient access to clinical information, and optimize the use of these systems. Areas where progress has stalled include: specialist EMR needs, applied research, local interoperability, decision support tools, and analytical tools. Stalled progress in these areas has meant Canadians are not benefiting at the point of care such as allowing comparisons between patients within a practice, comparing across practices, facilitating sentinel disease surveillance and a population health approach to primary care, and allowing patients to get consistent, more understandable information from their providers electronically through portals, emails and other e-routes. As we look to the future - and in particular the next three years - there's a need to reframe the discussion from building HIT infrastructure to deriving benefits. To this end, investment is required to ensure that the efforts to date are fully utilized and support improved patient outcomes. A committee comprised of CMA and Provincial Territorial Medical Associations representatives considered this issue and developed recommendation for targeted investment in HIT; these are outlined below. The CMA recommends the Government of Canada allocate $545 million as follows: * $200 million to support an additional 10,000 physicians not covered by current programs. * $200 million to support change management for EMR adoption. * $10 million to support data migration (i.e. clinics have to move to new products). * $100 million to support local interoperability solutions. * $5 million to support the Standards Collaborative. * $20 million to support research into HIT effectiveness. * $5 million to support solutions for the integration of clinical practice guidelines (CPGs). * $5 million for applied research on patient portal. This additional investment would benefit patients, providers and governments through improved patient care and improved performance of health care systems. In addition, the appropriate use of health information technology will contribute toward a more effective health care system supporting Canada's economic competitiveness. Conclusion Working with the provinces and territories and health care providers in delivering better health care to all Canadians through enhancing productivity and innovation is a policy challenge requiring federal leadership and engagement. The CMA believes the Government of Canada should act upon the recommendations included in this brief and collaborate with stakeholders to ultimately contribute to optimal health outcomes for Canadians, and health services that are delivered in a more efficient and cost-effective manner. 1 For the latest update on the Principles to Guide Health Care Transformation, visit: www.cma.ca/cma-media-releases 2 Statistics Canada. Population projections for Canada, provinces and territories 2009 to 2036. June 2010. 91-520-X 3 CIHI. Health Care in Canada, 2011, 1. 4 CMA. The need for health infrastructure. Submission to the Minister of Infrastructure, March 1, 2013. www.cma.ca/multimedia/CMA/Content_Images/Inside_cma/Submissions/2013/Health-Infrastructure_en.pdf . 5 CIHI. 2012. Health Care in Canada, 2012: A focus on wait times. 6 Alzheimer Society of Canada. A New Way of Looking at Dementia in Canada. Based on a study conducted by RiskAnalytica. C. 2010 7 PHAC. The Safe Living Guide - A guide to home safety for seniors. 2005. Revised 2011. 8 CIHI. 2013. End-of-life hospital care for cancer patients. 9 Keon, Wilbert J. & Lucie Pépin (2008) Population Health Policy: Issues and Options. Available at: www.parl.gc.ca/Content/SEN/Committee/392/soci/rep/rep10apr08-e.pdf 10 Public Health Agency of Canada (2004) Reducing Health Disparities-Roles of the Health Sector: Discussion Paper. Available at: publications.gc.ca/collections/Collection/HP5-4-2005E.pdf 11 Munro, Daniel (2008) "Healthy People, Healthy Performance, Healthy Profits: The Case for Business Action on the Socio-Economic Determinants of Health." The Conference Board of Canada. Available at: www.conferenceboard.ca/Libraries/NETWORK_PUBLIC/dec2008_report_healthypeople.sflb 12 Canadian Institute for Health Information. Drug expenditure in Canada, 1985 to 2011. Ottawa. 13 Statistics Canada. CANSIM Table 109-5012 - Household spending on prescription drugs as a percentage of after-tax income, Canada and provinces. www5.statcan.gc.ca/cansim/pick-choisir;jsessionid=4FF8F1A5D604C73873F71D9FDE6141C5. Accessed 12/10/12. 14 Commonwealth Fund. 2010 Commonwealth Fund International Health Policy Survey. www.commonwealthfund.org/~/media/Files/Surveys/2010/IHP%202010%20Toplines.pdf Accessed 12/10/12. 15 Ipsos Reid. Supplementary health benefits research. www.cma.ca/multimedia/CMA/Content_Images/Inside_cma/Media_Release/2012/ CMA-Benefits-Research-Survey_en.pdf. Accessed 12/10/12. 16 Statistics Canada. CANSIM Table 203-0026. Accessed 06/18/13. 17 Mikkonen, Juha & Dennis Raphael (2010) Social determinants of Health: The Canadian Facts. Available at: http://www.thecanadianfacts.org/The_Canadian_Facts.pdf 18 Health Council of Canada, "The Health Status of Canada's First Nations, Métis And Inuit Peoples", 2005, online: http://healthcouncilcanada.ca.c9.previewyoursite.com/docs/papers/2005/BkgrdHealthyCdnsENG.pdf Accessed October 20, 2010. 19 National Collaborating Centre for Aboriginal Health & UNICEF Canada "Leaving no child behind - national spotlight on health gap for Aboriginal children in Canada" 2009, online: www.nccah-ccnsa.ca/s_140.asp Accessed November 20, 2009 20 Health Council, supra note 34. 21 NWAC, 2009, supra note 39. 22 Canada, Health Canada, First Nations, Inuit and Aboriginal Health, (Ottawa: Health Canada), online: www.hc-sc.gc.ca/fniah-spnia/pubs/index-eng.php Accessed November 4, 2009 23 Assembly of First Nations (2013) Taking Action Together on Shared Priorities Towards a Fair and Prosperous Future: AFN Submission to the Council of the Federation. Available at: www.afn.ca/uploads/files/13-07-23_afn_submission_to_cof_2013.pdf 24 Bowen, S. Access to Health Services for Underserved Populations. 25 Assembly of First Nations (2011) Structural Transformation & Critical Investments in First Nations on the Path to Shared Prosperity. Pre-Budget Submission, 2011. Available at: www.afn.ca/uploads/files/2011-pre-budget-submission.pdf 26 OECD Health Data 2012 - www.oecd.org/health/healthgrowthinhealthspendinggrindstoahalt.htm 27 OECD, Economic Survey of Canada 2012. www.oecd.org/eco/surveys/economicsurveyofcanada2012.htm
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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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The Need for a National Strategy to Address Abuse and Misuse of Prescription Drugs in Canada: Canadian Medical Association Submission to the House of Commons Standing Committee on Health

https://policybase.cma.ca/en/permalink/policy11035
Date
2013-11-27
Topics
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
  1 document  
Policy Type
Parliamentary submission
Date
2013-11-27
Topics
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
Text
The Canadian Medical Association (CMA) is pleased to present this brief to the House of Commons Standing Committee on Health for consideration as part of its study on the government's role in addressing prescription drug abuse in Canada. It is increasingly recognized that while prescription medication has an important role in health care, the misuse and abuse of controlled psychoactive prescription medications, notably opioids such as oxycodone, fentanyl and hydromorphone, is emerging as a significant public health and safety issue. The use of prescription opioids is on the rise, in Canada and internationally. Canada has the second highest per capita consumption of prescription opioids in the world, after the United States. The CMA is particularly concerned about the impact of prescription drug abuse and misuse on vulnerable populations; notably, seniors, youth and First Nations. We note, for example, that in 2011 opioids were reported as the third most common drug (after alcohol and marijuana) used by students in Ontario. Controlled prescription medications are legal products intended for legitimate therapeutic purposes, such as pain management or palliative and end-of-life care. However, they may also be used for recreational purposes or to feed an addiction. Though many patients are prescribed controlled drugs to treat medical conditions, it is addiction which drives the drugs' illegal acquisition through means such as doctor-shopping, forging prescribers' signatures, or buying from street dealers or the Internet. Canada's physicians are concerned about the abuse and misuse of prescription medication for a number of reasons. For one, physicians need to assess the condition of patients who request the medication, and consider whether the use is clinically indicated and whether the benefits outweigh the risks. This can be challenging as there is no objective test for assessing pain, and therefore the prescription of opioids rests to a great extent on mutual trust between the physician and the patient. For another, physicians may need to prescribe treatment for patients who become addicted to the medications. Finally, they are vulnerable to patients who forge their signatures or use other illegal means to obtain prescriptions, or who present with fraudulent symptoms, or plead or threaten when denied the drugs they have requested. Canada's physicians believe that the misuse and abuse of prescription medication is a serious problem and because of its complexity, requires a complex and multifaceted solution. Therefore, the CMA makes the following recommendations to the Committee: 1) A National Strategy to Address the Abuse and Misuse of Prescription Medication The CMA recommends that the federal government work with provincial/territorial governments and other stakeholders to develop and implement a comprehensive national strategy to address the misuse and abuse of prescription medication in Canada. The CMA has consistently recommended a comprehensive national strategy to address the problems of drug abuse in Canada, whether of illegal or prescription-based substances. The Canadian Centre on Substance Abuse, in its report First Do No Harm: Responding to Canada's Prescription Drug Crisis, has offered nearly 60 recommendations toward the development of a strategy to combat misuse of prescription medications. The CMA believes that such a strategy should include: a) Prevention: Existing community programs and social marketing campaigns to address prescription drug abuse are generally aimed at young recreational users. For example, since many such users report that they get drugs from their parents' or friends' medicine cabinets, many jurisdictions have implemented prescription "take-back" programs, and education campaigns to promote safe storage and disposal of medications. Prevention strategies aimed at other types of prescription drug abuse, and targeting other populations such as health care providers, are still required. b) Treatment: Appropriate services for the treatment of addiction to prescription drugs are also a vital part of a national strategy. The CMA recommends that all partners work to improve and promote access to treatment programs - not only for treatment of addiction, such as pharmacological interventions, support and counselling, and withdrawal management, but also to treat and manage pain. In particular, the CMA recommends improving access to culturally appropriate treatment, counselling and withdrawal management programs in rural and remote areas, and for First Nations. c) Consumer Protection: There are several ways in which consumer protection strategies may form part of a strategy. One is modifications to the drugs themselves. For example, opioid manufacturers have developed formulations of their products intended to minimize their abuse potential, such as "slow-release" formulations and other forms of tamper-proofing to reduce a drug's potential for abuse. CMA supports further investigation into abuse-deterrent technologies. d) Surveillance and Research: Our knowledge of the extent of the prescription drug abuse problem in Canada, and the effectiveness of strategies proposed to combat it, is limited by a number of factors. These will be more specifically addressed later in this brief. 2) Strategies to Enhance Optimal Prescribing in Canada The CMA recommends that governments at all levels work with prescribers and the public, industry and other stakeholders to develop and implement a nationwide strategy to support optimal prescribing and medication use in Canada. In an ideal world, all patients would be prescribed the medications that have the most beneficial effect on their condition while doing the least possible harm. The CMA acknowledges that we have not yet achieved that ideal, but believes that optimal prescribing in Canada is a goal worth achieving. Our 2010 position statement "A Prescription for Optimal Prescribing" (Appendix A) recommends a national strategy to promote best practices in prescribing, and its recommendations can be applied to the specific situation of prescription drug abuse. Key elements of this strategy are: * Relevant, objective and easily accessible information for prescribers, which can readily be incorporated into every day practice. This can include clinical decision-support tools for use at the point of care. * Ongoing development and dissemination of clinical guidance in pain management. A Canadian practice guideline for use of opioids to treat chronic non-cancer pain, prepared under the direction of the multi-stakeholder National Opioid Use Guideline Group (NOUGG), was published in the Canadian Medical Association Journal on June 15, 2010. A number of plans for dissemination of this guideline are under way, under the direction of the Michael G. DeGroote National Pain Centre at McMaster University. They include an online CME module, co-sponsored by the CMA, which is now being finalized by MDcme.ca, a professional education group based at Memorial University. * Educational programs for prescribers in pain management and in the management of addictions. Both addiction treatment and pain management should be part of the educational curriculum in medical school and residency training as well as in continuing education. Educational programs could also provide prescribers with advice on how to recognize addiction in a patient, or on how to deal with fraudulent or aggressive patients. * Ensuring that prescribers have access to expert advice if required. This could be achieved through such means as: o Academic detailing programs, which use personalized one-on-one techniques to deliver impartial prescribing information to practitioners. o Communities of practice and clinical support networks that link practitioners with experts in the field. Experts can not only provide clinical information, but can provide mentorship and personal advice on best practices. 3) Monitoring and Surveillance of Prescription Drug Abuse The CMA recommends that all levels of government work with one another and health professional regulatory agencies to develop a pan-Canadian system of real-time prescription drug abuse monitoring and surveillance. One of the challenges in dealing with prescription drug abuse is the incompleteness of our knowledge of the extent of the problem, or of the most effective ways to address it. This means that physicians do not have access in real time to the information they need, at the point of care. For example, except in Prince Edward Island, physicians do not have the ability to look up a patient's medical history to determine if he or she has received a prescription from another source. Prescription monitoring programs exist in most provinces, but they vary in quality, in the nature of the information they require, and in the purpose for which data is collected. Some are administered by regulatory colleges, others by governments. The CMA recommends that national standards be developed for prescription monitoring programs, to ensure that all jurisdictions across Canada are collecting the same information in a standard way. Standardization of surveillance and monitoring systems can have a number of positive effects: * It can help identify fraudulent attempts to obtain a prescription, such as an attempt to fill prescriptions from a number of different providers. * It can help deter cross-provincial fraud. * It can help professional regulatory bodies actively monitor and intervene, as needed, with practitioners suspected of over-prescribing or over-dispensing frequently-misused medications. * Finally, it will help researchers gather consistent data to improve our knowledge of the problem, identify research priorities, and determine best practices to address crucial issues. The CMA also recommends that this system be electronic and that it be compatible with electronic medical and pharmacy record systems, and with provincial pharmaceutical databases such as British Columbia's. Provincial and territorial governments should work with the federal government and with health care providers to improve the standardization and sharing of information where appropriate. Prescription monitoring programs should be evaluated to ascertain their effectiveness in reducing misuse and abuse. We are pleased that federal, provincial and territorial health ministries have expressed interest in working together on issues related to prescription drug abuse, and we hope that this will result in a coherent national system for monitoring and surveillance, and thus to improved knowledge about the nature of the problem and its most effective solutions. In conclusion, the Canadian Medical Association reiterates the deep concern of Canada's physicians about prescription drug abuse and misuse in this country. We are committed to enhancing optimal prescribing and to working with governments to develop and implement a strong, coherent plan of action to address this pressing national problem.
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Proposed Amendments to the Criminal Code of Canada (Impaired Driving) : Response to Issue Paper of the Standing Committee on Justice and Human Rights

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

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