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A Prescription for SUFA : CMA Submission to the F/P/T Ministerial Council on Social Policy Renewal

https://policybase.cma.ca/en/permalink/policy1961

Last Reviewed
2010-02-27
Date
2002-10-18
Topics
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
Health systems, system funding and performance
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2010-02-27
Date
2002-10-18
Topics
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
Health systems, system funding and performance
Text
It has been over three years since the Social Union Framework Agreement (SUFA) was signed by the federal and provincial/territorial governments, with the exception of Quebec. At the time, it was heralded as an important breakthrough in federal-provincial relations that would clear the way for greater intergovernmental cooperation on pressing social policy issues such as health care renewal. Functional federalism is essential to achieving social policy objectives that will be of benefit to Canadians from coast to coast. While SUFA may not be perfect, it is better than the alternative of federal-provincial paralysis and dysfunction. And as SUFA acknowledges, Canada’s social union is about more that how governments relate to each other: it is about how governments can and should work with external stakeholders and individual Canadians to improve the social policies and programs. The health sector is an important test case for SUFA. It is the most cherished of Canada’s social programs. Canadians want and expect their governments to work together to improve the health care system and ensure its future sustainability. Ironically, it is also the area where government intergovernmental discord has been the greatest. On the eve of the final report of the Commission on the Future of Health Care in Canada, it is timely to reflect on SUFA and its role in the renewal of Canada’s health system. SUFA and the Health Sector – Strengths and Weaknesses The attached table provides a summary of the key elements of SUFA and the CMA’s assessment of how well SUFA provisions have been applied in the health sector. On the positive side, the health sector has fared relatively well in the area of mobility within Canada. Physicians and other regulated health care providers generally enjoy a high degree of mobility. Portability of hospital and medical benefits is largely ensured through interprovincial eligibility and portability agreements. There are, however, two areas of concern. First, there is the longstanding failure to resolve the non-portability of medical benefits for Quebec residents. Second, there is growing disparity in coverage for services that are currently not subject to national standards under the Canada Health Act, particularly prescription drugs and home care. In the area of dispute avoidance and resolution, governments have agreed to a formal process to address concerns with the Canada Health Act. This is a positive step, though few details have been made public. The real test will be whether this new process accelerates the resolution of non-compliance issues (most of which, as the Auditor-General recently pointed out, have remained unresolved for five years or longer), and whether the federal government will have the political will to levy discretionary penalties for non-compliance. There has also been progress on public accountability and transparency as governments have begun reporting results in 14 health indicator areas pursuant to the September 2000 health accord. The CMA is disappointed, however, that governments did not fulfil their pledge to involve stakeholders at all levels in the development of these indicators. Moreover, governments have short-changed Canadians by not providing them with a national roll-up of indicators that would facilitate comparisons across jurisdictions. Looking to the future, it will be critical to put in place a process that moves from benchmarks (indicators) to the bedside (best practices, better outcomes). This must be done in collaboration with health care researchers, providers and health managers—those individuals who understand the importance of taking research and importing it into practice. Clinical researchers across the country are doing this work and must to be supported. Overshadowing these relative successes in the first three years of the Social Union Framework Agreement are three key challenges that must be addressed: * inadequate institutional mechanisms to improve accountability across the system * failure to reduce uncertainty about what the health system will deliver, now and into the future * resistance on the part of governments to engage stakeholders in a true partnership for health system renewal The CMA is concerned that if these fundamental weaknesses are not addressed, they will undermine future attempts to renew Canada’s health system. Improving accountability With the adoption of SUFA, governments have significantly increased emphasis on performance measurement and public reporting. While this is a positive development, it also has the potential to lead towards information overload and paralysis, unless two critical elements are addressed. First, there is a need for a clear accountability framework that sets out the roles, rights and responsibilities of all key players in Canada’s health system: patients, health care providers and governments. This, in turn, requires the creation of a credible arm’s length institution to monitor compliance with this framework and rise above the fray to give Canadians the straight goods on health care. One has to look no further that the recent rekindling of the so-called “shares debate” between the federal and provincial governments as an example of why these changes are necessary. Reducing uncertainty Over the past decade, Canada’s health system has been plagued by an escalating crisis of uncertainty. Patients have faced increasing uncertainty about the accessibility and timeliness of essential health care services. Health care providers have seen working conditions deteriorate. Employers and private insurers have seen their contribution to funding health services increase unpredictably as governments have scaled back their funding commitments. Furthermore, provincial and territorial governments have had to contend with an unstable federal funding partner. Canadians deserve better. They need more certainty that their public health system will care for them when they need it most. They need more transparency from governments about “what’s in” and “what’s out” in terms of public or private coverage. They need their governments to act on their SUFA undertaking to make service commitments for social programs publicly available such as establishing standards for acceptable waiting times for health care. And they need governments to follow through with their SUFA commitment to ensure stable and adequate funding for the health system and other social programs. Fostering real partnerships In the health care field, deliberations and agreements have taken place behind closed doors and governments have discounted the role that non-governmental organizations and citizens should play in decision-making. It is these very providers and patients who are expected to implement and live with the results of such cloistered decision-making. The consequences of this systematic exclusion are all too evident in the current critical and growing shortages of physicians, nurses and other health professionals. If we are to achieve the vision of a sustainable Medicare program, it is critical that governments come clean on their SUFA commitment to work in partnership with stakeholders and ensure opportunities for meaningful input into social policies and programs. CMA’s Prescription for Sustainability – Building on SUFA The Social Union Framework Agreement has created the necessary, but not sufficient, conditions for health system renewal. It has codified the emerging consensus on federal-provincial relations and has clarified the "rules of the game". However, it is an enabling framework that is of limited value in the health sector unless it is given life through institutional mechanisms that establish enduring partnerships not just between governments, but between governments health care providers, and patients. In its final submission to the Commission on the Future of Health Care in Canada entitled “Prescription for Sustainability”, the CMA proposes the implementation of three integrated “pillars of sustainability” that together would improve accountability and transparency in the system: a Canadian Health Charter, a Canadian Health Commission, and federal legislative renewal. Canadian Health Charter A Canadian Health Charter would clearly articulate a national health policy that sets out our collective understanding of Medicare and the rights and mutual obligations of individual Canadians, health care providers, and governments. It would also underline governments’ shared commitment to ensuring that Canadians will have access to quality health care within an acceptable time frame. The existence of such a Charter would ensure that a rational, evidence-based, and collaborative approach to managing and modernizing Canada’s health system is being followed. Canadian Health Commission In conjunction with the Canadian Health Charter, a permanent, independent Canadian Health Commission would be created to promote accountability and transparency within the system. It would have a mandate to monitor compliance with and measure progress towards Charter provisions, report to Canadians on the performance of the health care system, and provide ongoing advice and guidance to the Conference on Federal-Provincial-Territorial ministers on key national health care issues. Recognizing the shared federal and provincial/territorial obligations to the health care system, one of the main purposes of the Canadian Health Charter is to reinforce the national character of the health system. Federal legislative renewal Finally, the CMA’s prescription calls for the federal government to make significant commitments in three areas: 1) a review of the Canada Health Act, 2) changes to the federal transfers to provinces and territories to provide increased and more targeted support for health care, and 3) a review of federal tax legislation to realign tax instruments with health policy goals. While these three “pillars” will address the broader structural and procedural problems facing Canada’s health care system, there is many other changes required to meet specific needs within the system in the short to medium term. The CMA’s Prescription for Sustainability provides specific recommendations in the following key areas: * Defining the publicly-funded health system (e.g. a more rational and transparent approach to defining core services, a “safety valve” if the public system fails to deliver, and increased attention to public health and Aboriginal health) * Investing in the health care system (e.g. human resources, capital infrastructure, surge capacity to deal with emergencies, information technology, and research and innovation) * Organization and delivery of services (e.g. consideration of the full continuum of care, physician compensation, rural health, and the role of the private sector, the voluntary sector and informal caregivers) Conclusion On balance, the Social Union Framework Agreement has been a positive step forward for social policy in Canada, though its potential is far from being fully realized. The CMA’s proposal for a Canadian Health Charter, a Canadian Health Commission and federal legislative review entail significant changes to the governance of Canada’s health system. These changes would be consistent with the Social Union Framework Agreement and would help “turn the corner” from debate to action on health system renewal. The early, ongoing and meaningful engagement of health care providers is the sine qua non of securing the long-term sustainability of Canada’s health system. Canada’s health professionals, who have the most to contribute, and next to patients – who have the most at stake – must be at the table when the future of health and health care is being discussed. The CMA’s Assessment of the Social Union Framework Agreement ANNEX [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] SUFA provisions CMA assessment Principles 1. All Canadians to be treated with fairness and equity 2. Promote equality of opportunity for all Canadians 3. Respect for the equality, rights and dignity of all Canadian women and men and their diverse needs 4. Ensure access for all Canadians to essential social programs and services of reasonably comparable quality 5. Provide appropriate assistance to those in need 6. Respect the principles of Medicare: comprehensiveness, universality, portability, public administration and accessibility 7. Promote the full and active participation of all Canadians in Canada’s economic and social life 8. Work in partnership with stakeholders and ensure opportunities for meaningful input into social policies and programs 9. Ensure adequate, affordable, stable and sustainable funding for social programs 10. Respect Aboriginal treaties and rights [#4] Progress towards the objective of ensuring access to essential health services of reasonably comparable quality is difficult to assess. First, there is no agreed-upon definition of essential health services. Second there the development of indicators and benchmarks of health care quality is still in its infancy. However, the CMA is very concerned that the system is not headed in the right direction, with growing shortages of physicians, nurses and other health care providers. According to Statistics Canada’s recently released survey on access to health care services, an estimated 4.3 million Canadians reported difficulties accessing first contact services and approximately 1.4 million Canadians reported difficulties accessing specialized services. [#6]Although there is broad support for the five principles of Medicare, there continue to be a number of longstanding violations of Canada Health Act that are not being addressed, including the portability of medical benefits for Quebec residents. The emergence of privately-owned clinics that charge patients for medically-necessary MRI scans is also cause for concern. [#8] There is no formal, ongoing mechanism for input from stakeholders and the individual Canadians in debates about national health policy issues. (See also #17 below). [#9] Ensuring adequate, affordable, and stable funding for Canada’s health system is essential to its long-term sustainability. During the 1990s, billions of dollars were siphoned out of the system to eliminate government deficits. To put Medicare back on a sustainable path, governments must make long-term funding commitments to meet the health care needs of Canadians. The CMA has recommended that the federal government should significantly increase its financial contribution to restore the federal-provincial partnership in health care, and increase accountability and transparency through a new earmarked health transfer. Mobility within Canada 11. Removal of residency-based policies governing access to social services 12. Compliance with the mobility provisions of the Agreement on Internal Trade [#11] Residency-based policies are generally not an issue for physician and hospital services, where inter-provincial portability is guaranteed through reciprocal billing arrangements. As noted above, however, the portability of medical benefits for many Quebec residents is limited because the province only reimburses out-of-province services at home-province (as opposed to host-province) rates. [#12] Regulatory authorities initiated work towards meeting the obligations of the Labour Mobility Chapter of the Agreement on Internal Trade in fall 1999. A Mutual Recognition Agreement has been developed and endorsed by all physician licensing authorities. Public accountability & transparency 13. Performance measurement and public reporting 14. Development of comparable indicators to measure progress 15. Public recognition of roles and contributions of governments 16. Use funds transferred from another order of government for purposes agreed and pass on increases to residents 17. Ensure effective mechanisms for Canadians to participate in developing social priorities and reviewing outcomes 18. Make eligibility criteria and service commitments for social programs publicly available 19. Have mechanisms in place to appeal unfair administrative practices 20. Report publicly on appeals and complaints [#13-14] Pursuant to the September 2000 Health Accord, the federal government and provinces have developed common health indicators in 14 areas and have released a first slate of reports. However, the usefulness of these reports is hampered by missing data elements on quality of care (access and waiting times in particular) and the absence of a national roll-up to facilitate inter-provincial comparisons. [#15] Continuing federal-provincial bickering about shares of health funding makes it clear that this provision is not being met. [#16] The CMA’s analysis of the Medical Equipment Fund found that incremental spending by provinces on medical technology accounted for only 60% of the $500 million transferred by the federal government for this purpose. [#17] There is no mechanism in place to ensure ongoing input from Canadians and health care providers in national health policy development. The CMA has recommended the creation of a Canadian Health Commission, with representation from the public and stakeholders to provide advice and input to governments on key national health policy issues. [#18] Although there have been proposals to this effect in a couple of provinces, governments currently do not make explicit commitments about the quality and accessibility of health services. In order to reduce the uncertainty Canadians are feeling with respect to Medicare, the CMA has recommended the creation of a Canadian Health Charter that would set out the rights and responsibilities of patients, health care providers and governments. In particular, the health charter would require all governments to set out care guarantees for timely access to health services based on the best available evidence. [#19-20] The Auditor-General recently reported that Health Canada provides inadequate reporting on the extent of compliance with the Canada Health Act. Governments working in partnership 21. Governments to undertake joint planning and information sharing, and work together to identify priorities for collaborative action 22. Governments to collaborate on implementation of joint priorities when this would result in more effective and efficient service to Canadians. 23. Advance notice prior to implementation of a major policy or program change that will substantially affect another government 24. Offer to consult prior to implementing new social policies and programs that are likely to substantially affect other governments. 25. For any new Canada-wide social initiative, arrangements made with one province/territory will be made available to all provinces/territories. 26. Governments will work with the Aboriginal peoples of Canada to find practical solutions to address their pressing needs [#21-25] The requirement for governments to work together collaboratively is perhaps the most important part of SUFA, yet there it is impossible for organizations and individuals outside of government to assess the degree to which these provisions have been met. This so-called “black box of executive federalism” is not serving Canadians well. In the health sector, there are too many examples of governments developing policy and making decisions with little or no input from those who will ultimately have to implement change. To achieve a true social union, the tenets of good collaborative working relationships – joint planning, advance notice and consultation prior to implementation – must be extended beyond the ambit of federal-provincial decision-making. The CMA’s proposal for a Canadian Health Commission would go some distance in addressing these concerns. A key part of its mandate would be to bring the perspective of health providers and patients into national health policy deliberations and decision-making. Federal spending power 27. Federal government to consult with P/T governments at least one year prior to renewal or significant funding changes in social transfers 28. New Canada-wide initiatives supported by transfers to provinces subject to: a) collaborative approach to identify Canada wide objectives and priorities b) Agreement of a majority of provincial governments c) Provincial discretion to determine detailed design to meet agreed objectives d) Provincial freedom to reinvest funding in related area if objectives are already met e) Jointly developed accountability framework 29. For new Canada-wide initiatives funded through direct transfers to individuals or organizations, federal government to provide 3-months notice and offer to consult [#27-28] There have been three new Canada-wide health initiatives supported by the federal spending power: the $500M Medical Equipment Fund, the $800 Primary Health Care Transition Fund and the $500M fund for health information technology. The Medical Equipment Fund was created to respond to a genuine need for more modern diagnostic and treatment equipment. However, objectives were vague, money was transferred with no strings attached, and there was no accountability framework. The result, as the CMA’s analysis has shown, is that a significant portion of the funding did not reach its destination. The jury is still out in the case of the Primary Care Transition Fund. Delivery of this program through normal government machinery will entail a higher degree of accountability than in the case of the Medical Equipment Fund. However, objectives of this initiative may be too broad to have a significant steering effect on the system as a whole. Canada Infoway Inc. is an arm’s length body created by the federal government to disburse the $500M in health information technology funding. While this model has the advantage of being less politicized than government-run programs; accountability to Parliament and to Canadians is weaker. Dispute avoidance & resolution 30. Governments committed to working together and avoiding disputes 31. Sector negotiations to resolve disputes based on joint fact-finding, including the use of a third party 32. Any government can require a decision to be reviewed one year after it enters into effect 33. Governments will report publicly on an annual basis on the nature of intergovernmental disputes and their resolution [#30-33] Federal and provincial governments have agreed to a formal dispute avoidance and resolution process under the Canada Health Act. The Canadian Health Commission recommended by the CMA could play a useful role as an independent fact-finder. Review of SUFA 34. By the end of the 3rd year, governments will jointly undertake a full review of the Agreement and its implementation. This review will ensure significant opportunities for input and feedback from Canadians and all interested parties, including social policy experts, the private sector and voluntary organizations. [#34] Governments have taken a minimalist approach to the SUFA review by opting for an internet-based consultation and closed meetings with invited external representatives. This approach is not sufficient. Future reviews should be more inclusive of all stakeholders. [TABLE END]

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Notes for an address by Dr. Eugene Bereza, Chair, Committee on Ethics, Canadian Medical Association : Bill C-13 - An act respecting assisted human reproduction : Presentation to the House of Commons Standing Committee on Health

https://policybase.cma.ca/en/permalink/policy1963

Last Reviewed
2010-02-27
Date
2002-11-20
Topics
Ethics and medical professionalism
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2010-02-27
Date
2002-11-20
Topics
Ethics and medical professionalism
Text
BILL C-13 - AN ACT RESPECTING ASSISTED HUMAN REPRODUCTION Presentation to the House of Commons Standing Committee on Health Ottawa, Ontario November 20, 2002 BILL C-13 - AN ACT RESPECTING ASSISTED HUMAN REPRODUCTION Madame Chair and Members of the Committee: My name is Dr. Eugene Bereza. I am a physician and clinical ethicist at the Royal Victoria Hospital in Montreal and Chair of the Canadian Medical Association Committee on Ethics. I am here today representing our members, more than 54,000 physicians from across Canada. I also wish to speak as a advocate for our patients, especially those affected by infertility and those who are or will suffer from diseases for which medical science is searching for cures. I am accompanied today by Dr. John Williams, our Director of Ethics. You will recall that we appeared before this Committee on October 23, 2001 in company with representatives from eight other national health provider and scientific organizations to present our views on draft legislation on assisted human reproduction. Although we were pleased that your December 2001 report recommended the establishment of an assisted reproduction regulatory body outside the Department of Health, we were disappointed that you did not find favour with other recommendations we put forward. The government responded to your report with Bill C-56, now Bill C-13. It is this bill that we are here to address today. Although there are many details in the bill on which we would like either clarification or changes, we intend to focus our remarks on the issue that we consider of greatest importance for our patient’s wellfare and the practice of medicine. That issue is the use of the criminal power to deal with medical and scientific activities. The Standing Committee Report and Bill C-13 In your December 2001 report, you acknowledged our position on this issue: “Some witnesses recommended the elimination of the prohibited activities category altogether. Citing the benefits of regulatory flexibility, they felt that all activities should come under the controlled activity category, including the more reprehensible activities like reproductive cloning for which licences, arguably, would never be allowed under the regulations” (page 9). However, you rejected this view on the grounds that “a licence-related prohibition of this sort would not carry the same weight or degree of social censure as the statutory prohibition…. An outright statutory ban signals more clearly that certain activities are either unsafe or socially unacceptable. The use of the statutory ban also signals that these activities are of such concern to Canadians that their status as a prohibited activity may not be altered except with the approval of Parliament” (page 9). Bill C-13 reflects your views on this matter. We recognize your good faith in proposing and defending this position but we are convinced that its potential for harm outweighs its potential benefits. And so we are pleased to have this opportunity to reiterate the reason why the CMA believes that Bill C-13 will adversely affect the patient-physician relationship and the advance of medical science. Need to Change Bill C-13 As you know, our position on this matter is supported by legal scholars such as Patrick Healy, McGill University Faculty of Law, Tim Caulfield, Director of the University of Alberta Health Law Institute, and Bartha Knoppers, Université de Montréal Centre de Recherche en Droit Publique. In essence, our position is that the criminal law is a blunt instrument and very difficult to change and is therefore appropriate for activities whose status is unlikely to change over time, such as murder and theft, rather than medical and scientific activities that are constantly developing. The latter are better left to a representative regulatory body to determine if and when changes in health and safety considerations and public attitudes and values might justify allowing certain formerly prohibited activities to take place under specific conditions. Bill C-13 begins with the statement: “This enactment prohibits assisted reproduction procedures that are considered to be ethically unacceptable.” This echoes the conclusions in your report. However, as the transcripts of your hearings demonstrate, many Canadians, especially those who are infertile, do not consider some or all of these procedures to be ethically unacceptable. As a matter of public policy, should Canadians who hold this view be denied access to medical treatment for infertility because others consider such treatments to be ethically unacceptable? Should patients who suffer from conditions for which research that is forbidden in Bill C-13 might lead to a cure be denied that opportunity? We question whether criminal prohibitions are appropriate for dealing with activities on which there is considerable ethical disagreement among Canadians. In Canada legislators have been justifiably reluctant to use the criminal law to deal with medical and scientific issues such as abortion, withdrawal of life-sustaining treatment and the conduct of medical research. Why is an exception being made for assisted reproduction? What sort of precedent will this set for other controversial bioethical issues? We are also concerned about the bill’s penalties for infractions: jail terms up to 10 years and fines up to $500,000. These are disproportionate to the penalties for crimes that injure persons or property and, as such, will create a climate of undue fear and excessive caution for physicians and scientists working in this area, such that they will avoid any activity that is potentially covered by the bill, even to the detriment of patient care. Given the rapid advance of science and medical practice and the difficulty of anticipating new developments, it will be difficult to adjust the law to deal with new applications of prohibited activities that may be ethically acceptable. An Alternate Solution The CMA has stated repeatedly that we are not opposed to the prohibition of certain assisted human reproduction activities. Instead of instituting criminal prohibitions within the legislation, we remain convinced that an independent body on an ongoing basis should determine the activities that are permissible or prohibited on the basis of up-to-date scientific research, public input and ethical review. This can be accomplished very easily in Bill C-13 by moving the procedures listed under “Prohibited Activities” (sections 5-9) to “Controlled Activities” and adding the words “except in accordance with the regulations and a licence” to each of the provisions in sections 5-9. Consistent with this recommendation we consider that the regulatory agency should be established as soon as possible and be given as much authority as possible over the matters that Bill C-13, section 65, reserves to regulations of Governor in Council. We hope that the agency will build upon the experience and expertise of existing organizations and structures in the field of assisted reproduction that deal with practice standards, education, certification and accreditation. Conclusion To summarize, we strongly support government efforts to regulate assisted human reproduction and related activities, including the prohibition of certain practices either temporarily or permanently. However, like others who have appeared before this Committee, we do not believe that criminalizing the medical and scientific activities named in the bill is an appropriate way to achieve those objectives. We consider that the objectives could be as well achieved by far less drastic means than criminalization and, moreover, that criminalization would create major obstacles to legitimate medical and scientific progress in the treatment of infertility. We recommend that the proposed agency be empowered to regulate these practices and that the criminal power be invoked when controlled activities are performed without authority of a licence from the agency or in defiance of the licensing conditions established by the agency. Thank you, Madame Chair and members of the Committee. We will be pleased to respond to your questions.

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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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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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A Public Health Perspective on Cannabis and Other Illegal Drugs : CMA Submission to the Special Senate Committee on Illegal Drugs

https://policybase.cma.ca/en/permalink/policy1968

Last Reviewed
2020-02-29
Date
2002-03-11
Topics
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
  2 documents  
Policy Type
Parliamentary submission
Last Reviewed
2020-02-29
Date
2002-03-11
Topics
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
Text
Cannabis has adverse effects on the personal health of Canadians and the well-being of society. In making this submission to the Special Senate Committee on Illegal Drugs, the Canadian Medical Association (CMA) wishes to make it clear that any change to the criminal status of cannabis must be done so with the recognition that cannabis is an addictive substance and that addiction is a disease. The CMA believes that the government must take a broad public health policy approach to address cannabis use. Focusing on the decriminalization issue alone is inadequate to deal with the complexity of the problem. Changes to the criminal law affecting cannabis must not promote normalization of its use, and must be tied to a national drug strategy that promotes awareness and prevention, and provides for comprehensive treatment. Under such a multidimensional approach the CMA would endorse decriminalization. In this document, we primarily focus on the health effects of cannabis use. However, we also present information and recommendations on the use of other illegal drugs. While we understand that this goes beyond the intended scope of the Senate Committee's study, this information is important to the development of comprehensive policy, which we believe is required. We also recognize and welcome the fact that many of the CMA's recommendations will require a closer working relationship among health providers, justice officials and law enforcement. The CMA's recommendations are: Section 1: Illegal Drugs 1. A National Drug Strategy: The federal government develop, in cooperation with the provinces and territories and the appropriate stakeholder groups, a comprehensive national drug strategy on the non-medical use of drugs. 2. Redistribution of Resources: The vast majority of resources dedicated to combating illegal drugs are directed towards law enforcement activities. Government needs to re-balance this distribution and allocate a greater proportion of these resources to drug treatment, prevention, and harm reduction programs. Law enforcement activities should target the distribution and production of illegal drugs. 3. Addiction is a Disease: Addiction should be regarded as a disease and therefore, individuals suffering with drug dependency should be diverted, whenever possible, from the criminal justice system to treatment and rehabilitation. Additionally, the stigma associated with addiction needs to be addressed as part of a comprehensive education strategy. 4. Increased Research: All governments commit to more research on the cause, effects and treatment of addiction. Further research on the long- term health effects associated with chronic cannabis use is specifically required. Section 2: Cannabis 1. National Cannabis Cessation Program: The federal government develop, in cooperation with the provinces and territories and the appropriate stakeholder groups, a comprehensive program to minimize cannabis use. This should include, but not be limited to: * Education and awareness raising of the potential harms of cannabis use including risks associated with use in pregnancy; use by those with mental illness; chronic respiratory problems; and chronic heavy use; * Strategies to prevent early use in adolescence; and, * Availability of assessment, counselling and treatment services for those experiencing adverse effects of heavy use or dependence. 2. Driving Under the Influence Prevention Policy: The CMA believes that comprehensive long-term efforts that incorporate both deterrent legislation and public awareness and education constitute the most effective approach to reducing the number of lives lost and injuries suffered in crashes involving impaired drivers. The CMA supports a similar multidimensional approach to the issue of the operation of a motor vehicle while under the influence of cannabis. 3. Decriminalization: The severity of punishment for simple possession and personal use of cannabis should be reduced with the removal of criminal sanctions. The CMA believes that resources currently devoted to combating simple marijuana possession through the criminal law could be diverted to public health strategies, particularly for youth. To the degree that having a criminal record limits employment prospects the impact on health status is profound. Poorer employment prospects lead to poorer health. Use of a civil violation, such as a fine, is a potential alternative. However, decriminalization should only be pursued as part of a comprehensive national illegal drug strategy that would include a cannabis cessation program. 4. Monitoring and Evaluation: Any changes need to be gradual to protect against any potential harm. In addition, changes to the criminal law in connection with cannabis, should be rigorously monitored and evaluated for their impact. This document also contains the policies and recommendations of the CMA affiliated association that has specific expertise in the field of substance use disorders the, Canadian Society of Addiction Medicine (CSAM). In addition, for an even broader health-sector perspective, the CMA has attached information on the policy positions of other key medical organizations from Canada and the United States in regard to decriminalization of cannabis. A PUBLIC HEALTH PERSPECTIVE ON CANNABIS AND OTHER ILLEGAL DRUGS INTRODUCTION The Canadian Medical Association (CMA) welcomes the opportunity to participate in the deliberations of the Special Senate Committee on Illegal Drugs. This document was developed by the CMA's new Office for Public Health in consultation with our Affiliate Societies, in particular the Canadian Society of Addiction Medicine, and our 12 provincial and territorial divisions. The use of illegal drugs and relevant policies is an extremely broad, multi-disciplinary and at times, controversial subject. Considering the breadth of this subject, the limited time-lines and the areas of particular interest of the Committee, this document will focus on the following: * What are the known health effects of cannabis and other illegal drugs? * What experience has there been with the decriminalization of cannabis? * What has been the impact of law enforcement on illegal drug use? * What changes need to be considered in Canada's approach to illegal drug use including the potential decriminalization of drugs? In addition to the above, this document will provide an overview of the relevant policy position statements and recommendations regarding cannabis and drug policy from other key medical organizations from both Canada and the United States. PUBLIC HEALTH PERSPECTIVE ON DRUG USE There are many different perspectives on the use of drugs including ethical and moral frameworks. This paper is prepared from a public health perspective where minimizing any harms associated with use is of primary concern. 1 This requires consideration of health issues related not only to the individual user and the drug being used, but also the key social factors associated with use. Drug use is a complex behaviour that is influenced by many factors. It is not possible to identify a single cause for drug use, nor will the set of contributing factors be the same among different drug users and populations. Public health objectives will vary depending upon the circumstances: preventing drug use in those who have not initiated use (e.g. pre-teens); avoiding use in circumstances associated with a risk of adverse outcomes (e.g. drug use and driving motor vehicle); assisting those who wish to stop using the drug (e.g. treatment, rehabilitation); and assisting those who intend to continue to use the drug to do so in such a manner as to reduce the risk of adverse effects (e.g. needle exchange program to reduce risk of HIV). To address this complexity, what is required is a public health strategy to combat drug use utilizing a comprehensive, multi-component approach. Public health strategies focus on the various predisposing, enabling, and re-enforcing factors that influence healthy behaviours and choices. 2 These sets of factors recognize the many influences upon individual behaviour including: individual and social attitudes, beliefs and values; skills; support, self-efficacy and re-enforcement. Public health actions can be grouped into the following major categories: 3 * Developing Personal Skills - education and skill-building (e.g. mass media, skill development to resist peer pressure, thinking skills); * Healthy Public Policy - policies, formal and informal that support health (e.g. school policy, substance use and driving, harm reduction initiatives); * Creating Supportive Environments - social and physical environments (e.g. adequate housing and food, community safety, non-chemical coping mechanisms); * Strengthen Community Action - community involvement in finding solutions (e.g. self-help, social support, community participation); * Health Services - range of services to meet needs (e.g. prevention, assessment, early intervention, treatment, rehabilitation, harm-reduction initiatives). This framework is useful in identifying the range of program components that need to be considered. Relative emphasis between components and the specific interventions selected will vary depending upon the target population (e.g. school students vs. injection drug users). The key is a balanced approach that will influence the factors contributing to less healthy behaviours with support for behaviour change and maintenance. CANNABIS Several commissions and task forces, in Canada and elsewhere, have addressed the issue of how to deal with cannabis use, although frequently their recommendations have not been implemented. 4, 5, 6 It has been suggested that "cannabis is a political football that governments continually duck...(but that) like a football, it bounces back." 7 This section of the paper will review current Canadian levels of use, health effects, law enforcement issues, and experience with decriminalization in other jurisdictions. Current Use The Ontario Student Drug Use Survey is conducted every two years in grades 7, 9, 11, and 13, although in 1999 all grades from 7-13 were surveyed. Use of cannabis within the preceding year increased from 11.7% of students in 1991, to 29.2% in 1999. 8 Increases were also observed for several other drugs during the same time period (tobacco, alcohol, glue, other solvents, hallucinogens, cocaine, PCP, and ecstasy). Increases in adolescent drug use have also been observed in the US, Europe and Australia through the 1990s. Compared with earlier cohorts, fewer students in 1999 reported early onset of cannabis use (before grade 7) compared with similarly aged students in 1997 and 1981. Past year drug use of cannabis, alcohol and tobacco by grade year is shown in Table 1. The proportion of students who have used one of these drugs increases with increasing grade level. [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Table 1 - Past Year Drug Use (%) by Grade Level, Ontario Students, 1999 7 8 9 10 11 12 13 Alcohol 39.7 53.7 63.1 74.9 82.0 84.6 83.0 Tobacco 7.4 17.8 27.8 37.4 41.7 38.6 38.0 Cannabis 3.6 14.9 25.5 36.4 48.1 39.4 43.3 1999 Ontario Student Drug Use Survey 9 [TABLE END] The last national survey of illicit drug use in Canada was conducted in 1994. 10 At that time, 23% of Canadians, aged 15 and over, reported having used cannabis more than once during their lifetime with 7% having used it within the preceding year. Current use is much more common in those under the age of 25 and diminishes significantly with age, (Table 2). Most cannabis use is sporadic with the majority of adult and adolescent users using it less than once a week. 11 [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Table 2 - Lifetime and Current Use of Cannabis in Canada, 1994 Age Lifetime Use (%) Current Use (%) (past 12 months) 15-17 30 24.0 18-19 32.9 23.8 20-24 37.7 19.0 25-34 38.2 9.6 35-44 32.9 5.7 45-54 14.8 1.4 55-64 3.7 - 65+ 0.8 - Canada's Alcohol and Other Drugs Survey: 1994 [TABLE END] Health Effects Our understanding of the health effects of cannabis continues to evolve. Hall summarizes the effects into acute and chronic effects and whether these are probable or possible (Table 3). 12 [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Table 3 - Summary of Probable and Possible Health Effects of Cannabis Use Pattern of Use Acute Chronic Probable anxiety, dysphoria, panic, cognitive impairment, psychomotor impairment; chronic bronchitis, lung cancer, dependence, mild cognitive impairment, exacerbation of psychosis; Possible (possible but uncertain, confirmation required in controlled studies) increased risk of traffic accident, psychosis, low-birth-weight babies; cancers in offspring, impaired immunity From CMAJ 2000; 162: 1690-1692. [TABLE END] Tetrahydrocannabinol (THC) is the main psychoactive substance in cannabis. THC is inhaled in the mainstream smoke and absorbed through the lungs, rapidly entering the bloodstream. Effects are perceptible within seconds and fully apparent in a few minutes. Cannabis combines many of the properties of alcohol, tranquilizers, opiates and hallucinogens; it has anxiolytic, sedative, analgesic and psychedelic properties. 13 Its acute toxicity is extremely low, as no deaths directly due to acute cannabis use have ever been reported. The main feature of its use is that it produces a feeling of euphoria (or 'high'). Toxic dose-related effects include anxiety, panic, depression or psychosis.14 It should also be noted that a significant incident of co-morbid addiction occurs in those with physical and mental diseases. People with major mental illnesses such as schizophrenia are especially vulnerable in that cannabis use can provoke relapse and aggravate existing symptoms. A chronic lack of energy and drive to work in chronic users has been referred to as an "amotivational syndrome," which is currently believed to represent an ongoing intoxication in frequent users. 14 Cannabis slows reaction times, impairs motor coordination and concentration as well as the completion of complex tasks. 13 Due to the extended presence of metabolites in the bloodstream, it is difficult to correlate blood levels with acute impairment making interpretation of crash data difficult. However, it is generally accepted that cannabis use is associated with an increased risk of motor vehicle and aircraft crashes. Impairments of attention, memory and the ability to process complex information can last for prolonged periods of time, even years, after cessation of heavy, chronic cannabis use. A cannabis withdrawal syndrome similar to alcohol, opiate and benzodiazepine withdrawal symptoms exist. 14 Cannabis use increases heart rate and causes blood vessels to dilate. These present a risk for those with pre-existing cardiac disease. Smoke from cannabis preparations contains many of the same compounds as tobacco cigarettes including increased levels of tar. Chronic cannabis smoking is associated with bronchitis and emphysema. Chronic cannabis use may have risks of chronic lung disease and lung cancer comparable to cigarette smoking. With increasing study and experience, it is clear that cannabis, like other substances such as tobacco or alcohol, can have a number of adverse physical and psychological effects. 15 Law Enforcement The 1997 data is the latest year with national drug offences' data for possession, cultivation, trafficking and importation (Figure 1). 16 The proportion of drug incidents is heavily skewed towards cannabis. This is intriguing since the health concerns of cannabis are substantially less than those of heroin or cocaine. [FIGURE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Figure 1: Proportion of All Drug Incidents by Drug Type, Canada, 1997 [FIGURE END] Of the 66,500 drug incidents in Canada in 1997, over 70% (47,908) were cannabis related. Of these, over two thirds (32,682) were for possession. The rate of cannabis offences has increased 34% since 1991 with cannabis-possession rates increasing steadily from 1991-1996 with a slight drop in 1997. Most (86%) of those charged with cannabis offences were under 25 years of age. It has been estimated that about 2,000 Canadians are sent to jail every year for cannabis possession.17 Despite the current level of enforcement, cannabis use has been increasing with over 40% of grade 11, 12 and 13 students having used cannabis in the preceding year. While it is obvious that only a small percentage of users are being charged, thousands of teens and young adults are being charged every year, receiving criminal records that can impact future employment, future interactions with the justice system, and be a barrier to acquiring citizenship. 11 Findings from several studies indicate that perceived health risk and social disapproval were much more important disincentives to cannabis use than legal threats. 18 Experience with Decriminalization in Other Jurisdictions A number of other jurisdictions have implemented alternative enforcement approaches to the personal use of cannabis. While none of these experiences directly predict what would happen in Canada, they do provide information to address some of the issues raised when decriminalization is considered. Despite the obvious interest in the impact of these policy changes, there is a paucity of well-designed evaluations (i.e. evaluations which were designed and implemented prior to policy change, rather than post-hoc analyses on available data). United States In the 1970s, several US states reduced the legal sanctions for possession of small amounts of cannabis to a maximum penalty of a fine. Despite the substantial potential interest in the effects of such policy changes, evaluative studies were relatively sparse. The available data, though based upon national high school student survey data as well as evaluations in two states, indicated that there was no apparent increase in cannabis use that could be attributed to decriminalization. 19 The high school student national survey data showed that while use of cannabis had increased in those states that had decriminalized possession, the rates of use had increased by a greater amount with stricter laws. California was one of the states which decriminalized possession, and similar to other states, experienced a decrease in cannabis use during the 1980s which based upon student surveys appeared to be due to changing perceptions of health risks rather than changes in the legal status of the drug. 19 Netherlands The Netherlands is the most frequently identified example of a country that altered its approach to marijuana. The Dutch impose no penalties for the possession of small amounts of cannabis and allow a number of coffee shops to openly sell the drug. 20 This policy therefore is not simply removing the potential for criminal records and imprisonment with possession, but actually partially legalized cannabis sales. This process began in 1976 and coffee shops were not allowed to advertise, could not sell hard drugs, no sales to minors, no public disturbances, and no sales transactions exceeding certain quantity thresholds. Initially this threshold was set at 30 gm of cannabis, a rather large amount which was reduced to 5 gm in 1995. Attempts have been made to compare the prevalence of cannabis use in the Netherlands with other countries. Since cannabis use changes dramatically with age and over different time periods, surveys need to be of similar populations during similar time periods to be comparable. Differences in the wording of questions between surveys also make comparison difficult. A recent review by MacCouin et al makes 28 comparisons between the Netherlands and the US, Denmark, West Germany, Sweden, Finland, France and the UK.21 Overall, it appears that Dutch rates are lower than rates of use in the US but somewhat higher than those of some of its European neighbours. Cannabis use is higher in Amsterdam compared to other Dutch cities and is comparable to use in the US. A limited number of surveys appear to show that from 1984 to 1992, there was a substantial increase in adolescent (aged 16 - 20) use of cannabis that did not occur in other countries. The increases observed from 1992 to 1998 however, were similar to the increases observed in other countries including Canada. Overall, it appears that while the increases in Dutch adolescent use started earlier than other countries, their prevalence of use was much lower than comparison countries so that by the late 1990s they had comparable rates of use to the US and Canada. Australia From 1987 to 1995, three Australian states decriminalized the possession and cultivation of cannabis for personal use by replacing penal sanctions with fines. 22 The courts in other states have tended to utilize non-penal sanctions such as a fine or a suspended sentence with a criminal record. The limited number of surveys conducted in Australia has failed to find evidence of any large impact on cannabis use (some of the surveys had small sample sizes and the trend in usage has been upwards in Australian states which did not decriminalize as well as in other countries that continue to prohibit cannabis use). Interestingly, despite the decriminalization, the number of notices issued by police exceeds the number of cannabis offences prior to the change in law. Summary The preceding sections have suggested that cannabis use is relatively common (particularly in teens and young adults); most use is sporadic; its use is increasing; and it is not harmless. Because of these potential harms, one would not wish to encourage its use. There is however, no necessary connection between adverse health effects of any drug or human behaviour and its prohibition by law. 22 The issue is therefore whether there are less coercive ways to discourage its use. Despite the current criminal justice approach where the bulk of all illegal drug charges are cannabis-related and the majority of these are for possession, use is increasing with thousands of teens and young adults receiving criminal records for possession each year. The available evidence from other jurisdictions suggests that decriminalization would not result in a substantial increase in use beyond baseline trends. Considering current trends, a comprehensive approach to discourage current usage is required. OTHER ILLEGAL DRUGS Illegal drugs other than cannabis present a different set of issues and concerns. While these drugs are not the primary focus of the Special Senate Committee's study, we have included a few key issues to better put the cannabis issue in proper context. Current Use The Ontario Student Drug Use Survey of students in grades 7, 9, 11 and 13 has shown that following a lengthy period of decline in drug use during the 1980s, there has been a steady increase in adolescent drug use. 8 Past year drug use in 1999 was reported as follows: ecstasy (4.8%); PCP (3.2%); hallucinogens (13.8%), and cocaine (4.1%). By comparison, tobacco, alcohol and cannabis were 28.3%, 65.7%, and 29.2% respectively. Canadian survey data of those aged 15 and over in 1994 found that about one in twenty reported any lifetime use of LSD, speed or heroin, or cocaine. 10 Rates of use of these drugs within the preceding year were 1% and 0.7% respectively. Health Effects The adverse effects of drugs such as heroin and cocaine are related not just to the drugs themselves, but also increasingly to their method of intake, which is predominantly by injection. Injection drug use (IDU) is an efficient delivery mechanism of drugs, but is also an extremely effective means of transmitting bloodborne viruses such as hepatitis B, hepatitis C and HIV. The proportion of HIV infections attributable to IDU has increased from 9% prior to 1985 to over 25% by 1995. 23 IDU is also the predominant means of hepatitis C transmission responsible for 70% of cases. 24 The increasing use of cocaine, which tends to be injected on a more frequent basis, increases the subsequent exposure to infection. It has been estimated that up to 100,000 Canadians inject drugs (not counting steroids). 25 Transmission of bloodborne pathogens is not limited to injection drug users as the disease can then be further spread to sexual contacts, including the sex trade, and vertical transmission from infected mother to child. An epidemic of overdose deaths among injection drug users has been experienced in British Columbia with over 2000 such deaths in Vancouver since 1991. 17 Despite the seriousness of the potential adverse effects of illegal drug use and the potential for this situation to worsen with increasing transmission of bloodborne diseases, on a population basis, legal drugs (alcohol and tobacco) are responsible for substantially more deaths, potential years of life lost and hospitalizations. 26 [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Table 4 - The Number of Deaths, Premature Mortality and Hospital Separations for Illicit Drugs, Alcohol and Tobacco, Canada, 1995. Deaths Potential Years of Life Lost Hospital Separations Illicit Drugs 805 33,662 6,940 Alcohol 123,734 172,126 82,014 Tobacco 34,728 500,350 193,772 From: Single et al. CMAJ 2000: 162: 1669-1675 [TABLE END] Expenditures on Illegal Drugs The direct costs associated with illicit drugs based on 1992 Canadian data are shown in the figure below: [FIGURE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] [FIGURE END] The vast majority of expenditures related to illegal drugs are on law enforcement. Considering the distribution of drug incidents, a substantial proportion of these are related to cannabis offences although health and other costs will predominantly be associated with other drugs. A substantial proportion of drug charges are for possession as compared with trafficking or importation (cocaine 42%; heroin 42%; other drugs 56%). 16 Despite illegal drug use being primarily a health and social issue, current expenditures do not reflect this and are heavily skewed towards a criminal justice approach. Unfortunately, prisons are not an ideal setting for treating addictions with the potential for continued transmission of bloodborne viruses. RECOMMENDATIONS The Need for Balanced, Comprehensive Approaches Reasons for drug use, particularly "hard drugs," are complex. It is not clear how a predominantly law enforcement approach is going to address the determinants of drug use, treat addictions, or reduce the harms associated with drug use including overdoses and the transmission of bloodborne viruses including HIV. Costs of incarceration are substantially more than the use of effective drug treatment. 27 It appears that there is an over dependence on the law when other models might be more effective in achieving the desired objective of preventing or reducing harm from drug use. 18 Aggressive law enforcement at the user level could exacerbate these harms by encouraging the use of the most dangerous and addictive drugs in the most concentrated forms, 28 because these are easier to conceal and the efficacy of injecting is greater than that of inhaling as drug costs increase in response to prohibition and enforcement. 29 There have been several recent sets of recommendations from expert groups regarding the need for a comprehensive set of approaches to address the public health challenges due to drug use, particularly those associated with injection drug use (IDU). 17, 25, 30, 31 Recommendations include the following components: * address prevention; * treatment and rehabilitation; * research; * surveillance and knowledge dissemination; * national leadership and coordination. Many of the recommendations will require close working relationships with justice/enforcement officials. Drug abuse and dependency is a chronic, relapsing disease for which there are effective treatments.32 A criminal justice approach to a disease is inappropriate particularly when there is increasing consensus that it is ineffective and exacerbates harms.33 The CMA's recommendations have been separated into two separate sections. The first set of recommendations is focused on policies affecting illegal drugs in general. While this goes beyond the intended scope of the Senate Committee's study, in our opinion, these recommendations are equally important for the Committee to consider. The second set of recommendations is specifically focused on cannabis. Our recommendations in this section take into consideration the health impact profile of cannabis, current levels of use, extent and impact of law enforcement activities and experience from other jurisdictions. Section 1: Illegal Drugs The CMA recommends: 1. A National Drug Strategy: The federal government develop, in cooperation with the provinces and territories and the appropriate stakeholder groups, a comprehensive national drug strategy on the non-medical use of drugs. 2. Redistribution of Resources: The vast majority of resources dedicated to combating illegal drugs are directed towards law enforcement activities. Government needs to re-balance this distribution and allocate a greater proportion of these resources to drug treatment, prevention, and harm reduction programs. Law enforcement activities should target the distribution and production of illegal drugs. 3. Addiction is a Disease: Addiction should be regarded as a disease and therefore, individuals suffering with drug dependency should be diverted, whenever possible, from the criminal justice system to treatment and rehabilitation. Additionally, the stigma associated with addiction needs to be addressed as part of a comprehensive education strategy. 4. Increased Research: All governments commit to more research on the cause, effects and treatment of addiction. Further research on the long- term health effects associated with chronic cannabis use is specifically required. Section 2: Cannabis The CMA recommends: 1. National Cannabis Cessation Program: The federal government develop, in cooperation with the provinces and territories and the appropriate stakeholder groups, a comprehensive program to minimize cannabis use. This should include, but not be limited to: * Education and awareness raising of the potential harms of cannabis use including risks associated with use in pregnancy; use by those with mental illness; chronic respiratory problems; and chronic heavy use; * Strategies to prevent early use in adolescence; and, * Availability of assessment, counselling and treatment services for those experiencing adverse effects of heavy use or dependence. 2. Driving Under the Influence Prevention Policy: The CMA believes that comprehensive long-term efforts that incorporate both deterrent legislation and public awareness and education constitute the most effective approach to reducing the number of lives lost and injuries suffered in crashes involving impaired drivers. The CMA supports a similar multidimensional approach to the issue of the operation of a motor vehicle while under the influence of cannabis. 3. Decriminalization: The severity of punishment for simple possession and personal use of cannabis should be reduced with the removal of criminal sanctions. The CMA believes that resources currently devoted to combating simple marijuana possession through the criminal law could be diverted to public health strategies, particularly for youth. To the degree that having a criminal record limits employment prospects the impact on health status is profound. Poorer employment prospects lead to poorer health. Use of a civil violation, such as a fine, is a potential alternative. However, decriminalization should only be pursued as part of a comprehensive national illegal drug strategy that would include a cannabis cessation program. 4. Monitoring and Evaluation: Any changes need to be gradual to protect against any potential harm. In addition, changes to the criminal law in connection with cannabis, should be rigorously monitored and evaluated for their impact. CANADIAN SOCIETY OF ADDICTION MEDICINE The Canadian Society of Addiction Medicine (CSAM), which was formed in 1989, is a national organization of medical professionals and other scientists interested in the field of substance use disorders. Vision The Society shares its overall goals with many other organizations and groups in Canada; namely, the prevention of problems arising from the use of alcohol and other psychoactive substances, and the cure; improvement or stabilization of the adverse consequences associated with the use of these drugs. This Society aims to achieve these goals through the fostering and promotion of medical sciences and clinical practice in this field in Canada, particularly by: * fostering and promotion of the roles of physicians in the prevention and treatment of alcohol and drug related problems; * improvement in the quality of medical practice in the drug and alcohol field through: establishment and promotion of standards of clinical practice; fostering and promotion of research; and fostering and promotion of medical education; * promotion of professional and public awareness of the roles that physicians can play in the prevention and treatment of alcohol and drug related problems; * fostering and promotion of further development of programs for the prevention and treatment of problems of alcohol and drug use in physicians; and * contributing to professional and public examination and discussion of important issues in the drug and alcohol field. Policy Statement The CSAM National Drug Policy statement requires that: Canada must have a clear strategy for dealing with the cultivation, manufacture, importation, distribution, advertising, sale, possession and use of psychoactive substances regardless of whether they are classified as legal or illegal. Drug possession for personal use must be decriminalized and distinguished from the trafficking or illegal sale/distribution of drugs to others that must carry appropriate criminal sanctions. The individual and public health impact of substance use, substance abuse and substance dependence must be taken into account at all times. An assessment to ascertain the extent of a substance use disorder and screening for addiction must be an essential part of dealing with someone identified as an illicit drug user or possessor. Appropriate funding must be made available for supply reduction and demand reduction of various psychoactive substances that carry an abuse or addiction liability. Recommendations 1. National policies and regulations must present a comprehensive and coordinated strategy aimed at reducing the harm done to individuals, families and society by the use of all drugs of dependence regardless of the classification of "legal" or "illegal" 2. Prevention programs need to be comprehensively designed to target the entire range of dependence-producing drugs to enhance public awareness and affect social attitudes with scientific information about the pharmacology of drugs and the effects of recreational and problem use on individuals, families, communities and society. 3. Outreach, identification, referral and treatment programs for all persons with addiction need to be increased in number and type until they are available and accessible in every part of the country to all in need of such services. 4. Law enforcement measures aimed at interrupting the distribution of illicit drugs need to be balanced with evidenced based treatment and prevention programs, as well as programs to ameliorate those social factors that exacerbate addiction and its related problems. 5. Any changes in laws that would affect access to dependence-producing drugs should be carefully thought out, implemented gradually and sequentially, and scientifically evaluated at each step of implementation, including evaluating the effects on: * access to young people and prevalence of use among youth; * prevalence of use in pregnancy and effects on offspring; * prevalence rates of alcoholism and other drug dependencies; * crime, violence and incarceration rates; * law enforcement and criminal justice costs; * industrial safety and productivity; * costs to the health care system; * family and social disruption; * other human, social and economic costs. 6. CSAM opposes * any changes in law and regulation that would lead to a sudden significant increase in the availability of any dependence-producing drug (outside of a medically-prescribed setting for therapeutic indications). All changes need to be gradual and carefully monitored. * any system of distribution of dependence-producing drugs that would involve physicians in the prescription of such drugs for other than therapeutic or rehabilitative purposes. 7. CSAM supports * public policies that would offer treatment and rehabilitation in place of criminal penalties for persons with psychoactive substance dependence and whose offense is possession of a dependence-producing drug for their own use. Those who are found guilty of an offense related to Addiction, proper assessment and treatment services must be offered as part of their sentence. This goal may be attained through a variety of sentencing options, depending upon the nature of the offense. * an increase in resources devoted to basic and applied research into the causes, extent and consequences of alcohol and other drug use, problems and dependence, and into methods of prevention and treatment. RELEVANT POSITION STATEMENTS OF OTHER MEDICAL HEALTH ORGANIZATIONS The purpose of this section is to provide the Special Senate Committee on Illegal Drugs with information on the policy positions of other key medical organizations from Canada and the United States in regard to decriminalization of cannabis. Canadian Centre for Addiction and Mental Health34 The Centre for Addiction and Mental Health (CAMH) does not encourage or promote cannabis use. CAMH emphasizes that the most effective way of avoiding cannabis-related harms is through not using cannabis, and encourages people to seek treatment where its use has become a problem. Cannabis is not a benign drug. Cannabis use, and in particular frequent and long-term cannabis use, has been associated with negative health and behavioural consequences, including respiratory damage, problems with physical coordination, difficulties with memory and cognition, pre- and post-natal development problems, psychiatric effects, hormone, immune and cardio-vascular system defects, as well as poor work and school performance. The consequences of use by youth and those with a mental disorder are of particular concern. However, most cannabis use is sporadic or experimental and hence not likely to be associated with serious negative consequences. CAMH thus holds the position that the criminal justice system in general, and the Controlled Drugs and Substances Act (CDSA) specifically, under which cannabis possession is a criminal offence, has become an inappropriate control mechanism. This conclusion is based on the available scientific knowledge on the effects of cannabis use, the individual consequences of a criminal conviction, the costs of enforcement, and the limited effectiveness of the criminal control of cannabis use. CAMH thus concurs with similar recent calls from many other expert stakeholders who believe that the control of cannabis possession for personal use should be removed from the realm of the CDSA and the criminal law/criminal justice system. While harmful health consequences exist with extensive cannabis use, CAMH believes that the decriminalization of cannabis possession will not lead to its increased use, based on supporting evidence from other jurisdictions that have introduced similar controls. CAMH recommends that a more appropriate legal control framework for cannabis use be put into place that will result in a more effective and efficient control system, produce fewer negative social and individual consequences, and maintain public health and safety. An alternative legal control system for the Canadian context can be chosen from a number of options that have been tried and proven adequate in other jurisdictions. CAMH further recommends that such an alternative framework be explored on a temporary and rigorously evaluated trial basis, and that an appropriate level of funding be provided/maintained for prevention and treatment programs to minimize the prevalence of cannabis use and its associated harms. American Society of Addiction Medicine 35 The Society's 1994 policy which was updated September 2001 recommends the following: 1. National policy should present a comprehensive and coordinated strategy aimed at reducing the harm done to individuals, families and society by the use of all drugs of dependence. 2. Reliance on the distinction between "legal" and "illegal" drugs is a misleading one, since so-called "legal" drugs are illegal for persons under specified ages, or under certain circumstances. 3. Prevention programs should be comprehensively designed to target the entire range of dependence-producing drugs as well as to produce changes in social attitudes. (See ASAM Prevention Statement.) 4. Outreach, identification, referral and treatment programs for all persons suffering from drug dependencies, including alcoholism and nicotine dependence, should be increased in number and type until they are available and accessible in every part of the country to all in need of such services. 5. Persons suffering from the diseases of alcoholism and other drug dependence should be offered treatment rather than punished for their status of dependence. 6. The balance of resources devoted to combatting these problems should be shifted from a predominance of law enforcement to a greater emphasis on treatment and prevention programs, as well as programs to ameliorate those social factors that exacerbate drug dependence and its related problems. 7. Law enforcement measures aimed at interrupting the distribution of illicit drugs should be aimed with the greatest intensity at those causing the most serious acute problems to society. 8. Any changes in laws that would affect access to dependence-producing drugs should be carefully thought out, implemented gradually and sequentially, and scientifically evaluated at each step of implementation, including evaluating the effects on: a. prevalence of use in pregnancy and effects on offspring; b. prevalence rates of alcoholism and other drug dependencies; c. crime, violence and incarceration rates; d. law enforcement and criminal justice costs; e. industrial safety and productivity; f. costs to the health care system; g. family and social disruption; h. other human, social and economic costs. 9. ASAM opposes any changes in law and regulation that would lead to a sudden significant increase in the availability of any dependence-producing drug (outside of a medically-prescribed setting for therapeutic indications). Any changes should be gradual and carefully monitored. 10. ASAM opposes any system of distribution of dependence-producing drugs that would involve physicians in the prescription of such drugs for other than therapeutic or rehabilitative purposes. 11. ASAM supports public policies that would offer treatment and rehabilitation in place of criminal penalties for persons who are suffering from psychoactive substance dependence and whose only offense is possession of a dependence-producing drug for their own use. 12. ASAM supports public policies which offer appropriate treatment and rehabilitation to persons suffering from psychoactive substance dependence who are found guilty of an offense related to that dependence, as part of their sentence. This goal may be attained through a variety of sentencing options, depending upon the nature of the offense. 13. ASAM supports an increase in resources devoted to basic and applied research into the causes, extent and consequences of alcohol and other drug use, problems and dependence, and into methods of prevention and treatment. 14. In addition, scientifically sound research into public policy issues should receive increased support and be given a high priority as an aid in making such decisions. 15. Physicians and medical societies should remain active in the effort to shape national drug policy and should continue to promote a public health approach to alcoholism and other drug dependencies based on scientific understanding of the causes, development and treatment of these diseases. US Physician Leadership on National Drug Policy 32 The Physician Leadership on National Drug Policy (PLNDP) was started in 1997 when 37 senior physicians from virtually every medical society* met and agreed that the "current criminal justice driven approach is not reducing, let alone controlling drug abuse in America." Their extensive review of the literature found: * drug addiction is a chronic, relapsing disease, like diabetes or hypertension; * treatment for drug addiction works; * treating addiction saves money; * treating drug addiction restores families and communities; * prevention and education help deter youth from substance abuse, delinquency, crime and incarceration. In follow-up to an extensive review of the literature, their key policy recommendations are: * Reallocate resources toward drug treatment and prevention; * Parity in access to care, treatment benefits, and clinical outcomes; * Reduce the disabling regulation of addiction treatment programs; * Utilize effective criminal justice procedures to reduce supply and demand (e.g. community coalitions, community policing, drug courts); * Expand investments in research and training; * Eliminate the stigma associated with the diagnosis and treatment of drug problems; * Train physicians and (medical) students to be clinically competent in diagnosing and treating drug problems. REFERENCES 1 Mosher JF, Yanagisako KL. Public health, not social warfare: a public health approach to illegal drug policy. J Public Health Policy 1991; 12: 278-323. 2 Precede - proceed model of health promotion. Institute of Health Promotion Research. Available from: http://www.ihpr.ubc.ca/frameset/frset_publicat.htm. Accessed: Nov 27, 2001. 3 World Health Organization. Ottawa charter for health promotion. Ottawa: World Health Organization, 1986. 4 Dean M. UK government rejects advice to update drug laws. Lancet 2000; 355: 1341. 5 Curran WJ. Decriminalization, demythologizing, desymbolizing and deemphasizing marijuana. Am J Public Health. 1972; 62: 1151-1152. 6 Report of the Canadian Government Commission of Inquiry into the non-medical use of drugs. Ottawa, 1972. 7 Anonymous. Deglamorising cannabis. Lancet 1995; 346: 1241. (editorial) 8 Edlaf EM, Paglia A, Ivis FJ, Ialomiteanu A. Nonmedicinal drug use among adolescent students: highlights from the 1999 Ontario Student Drug Use Survey. CMAJ 2000; 162: 1677-1680. 9 Centre for Addiction and Mental Health. The 1999 Ontario Student Drug Use Survey - executive summary. Available from: http://www.camh.net/addiction/ont_study_drug_use.html. Accessed: October 15, 2001. 10 MacNeil P, Webster I. Canada's alcohol and other drugs survey 1994: a discussion of the findings. Ottawa: Health Canada, 1997. 11 Single E, Fischer B, Room R, Poulin C, Sawka E, Thompson H, Topp J. Cannabis control in Canada: options regarding possession. Ottawa, Canadian Centre on Substance Abuse, 1998. Available from: http://www.ccsa.ca/. 12 Hall W. The cannabis policy debate: finding a way forward. CMAJ 2000; 162: 1690-1692. 13 Ashton CH. Pharmacology and effects of cannabis: a brief review. Br J Psychiatr 2001; 178: 101-106. 14 Johns A. Psychiatric effects of cannabis. Br J Psychiatr 2001; 178: 116-122. 15 Farrell M, Ritson B. Br J Psychiatr 2001; 178: 98. 16 Tremblay S. Illicit drugs and crime in Canada. Juristat 1999; 19. 17 Riley D. Drugs and drug policy in Canada: a brief review and commentary. November, 1998. Available from: http://www.parl.gc.ca/37/1/parlbus/commbus/senate/com-e/ill-e/library-e/riley-e.htm. Accessed: October 15, 2001. 18 Erickson PG. The law, social control, and drug policy: models, factors, and processes. Int J Addiction 1993; 28: 1155-1176. 19 Single EW. The impact of marijuana decriminalization: an update. J Public Health Policy 1989; 10: 456-66. 20 MacCoun R. Interpreting Dutch cannabis policy: reasoning by analogy in the legalization debate. Science 1997; 278: 47-52. 21 MacCoun R, Reuter P. Evaluating alternative cannabis regimes. Br J Psychiat 2001; 178: 123-128. 22 Hall W. The recent Australian debate about the prohibition on cannabis use. Addiction 1997; 92: 1109-1115. 23 Centre for Infectious Disease Prevention and Control. HIV/AIDS among injecting drug users in Canada. May 2001. Available from: http://www.hc-sc.gc.ca/hpb/lcdc/bah/epi/idus_e.html. Accessed Oct 17, 2001. 24 Hepatitis C - prevention and control : a public health consensus. Can Communic Dis Rep 1999; 25S2. Available from: http://www.hc-sc.gc.ca/hpb/lcdc/publicat/ccdr/99vol25/25s2/index.html. Accessed: Oct 17, 2001. 25 F/P/T Advisory Committee on Population Health et al. Reducing the harm associated with injection drug use in Canada: working document for consultation. March 2001. Available from: http://www.aidslaw.ca/Maincontent/issues/druglaws.htm. Accessed: Oct 14, 2001. 26 Single E, Rehm J, Robson L, Van Truong M. The relative risks and etiologic fractions of different causes of death attributable to alcohol, tobacco and illicit drug use in Canada. CMAJ 2000: 162: 1669-1675. 27 Marwick C. Physician Leadership on National Drug Policy finds addiction treatment works. JAMA 1999; 279: 1149-1150. 28 Grinspoon L, Bakalar JB. The war on drugs - a peace proposal. N Eng J Med 1994: 330: 357-360. 29 Hankins C. Substance use: time for drug law reform. CMAJ 2000: 162: 1693-1694. 30 National Task Force on HIV, AIDS and Injection Drug Use. HIV/AIDS and injection drug use: a national action plan. Canadian Centre for Substance Abuse and Canadian Public Health Association. May 1997. Available from: http://www.ccsa.ca/docs/HIVAIDS.HTM. Accessed: Oct 15, 2001. 31 Canadian HIV/AIDS Legal Network. Injection drug use and HIV/AIDS: legal and ethical issues. Montreal: Network, 1999. 32 Physician Leadership on National Drug Policy. Position paper on drug policy. January 2000. Available from: http://center.butler.brown.edu/plndp/. Accessed: Nov 27, 2001. 33 The Fraser Institute. Sensible solutions to the urban drug problem. 2001. Available from: http://www.fraserinstitute.ca/publications/books/drug_papers/. Accessed: Nov 29, 2001. 34 Canadian Centre for Addiction and Mental Health. CAMH Position on the legal sanctions related to cannabis possession/use. April 2000. Available from: www.camh.net/position_papers/cannabis_42000.html. Accessed Oct 9, 2001. 35 American Society of Addiction Medicine. Public policy of ASAM. Adopted 1994. Updated Sept 29, 2001. Available from: www.asam.org. Accessed: Nov 27, 2001. ?? ?? ?? ?? A healthy population...a vibrant medical profession Une population en santé...une profession médicale dynamique A Public Health Perspective on Cannabis and Other Illegal Drugs Ottawa, March 11, 2002 Page 21 Canadian Medical Association

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