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Policies that advocate for the medical profession and Canadians


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Acquired immunodeficiency syndrome (Update 2000)

https://policybase.cma.ca/en/permalink/policy165
Last Reviewed
2020-02-29
Date
2000-12-09
Topics
Health care and patient safety
  1 document  
Policy Type
Policy document
Last Reviewed
2020-02-29
Date
2000-12-09
Replaces
Acquired immunodeficiency syndrome (1989)
Topics
Health care and patient safety
Text
Acquired immunodeficiency syndrome (UPDATE 2000) The Canadian Medical Association has developed the following general principles to serve as guidelines for various bodies, health care professionals and the general public. Specific aspects of infection with human immunodeficiency virus (HIV) and acquired immunodeficency syndrome (AIDS) that relate to physicians' ethical responsibilities as well as society's moral obligations are discussed. Such matters include: the need for education, research and treatment resources; the patient's right to investigation and treatment and to refuse either; the need to obtain the patient's informed consent; the right to privacy and confidentiality; the importance of infection control; and the right to financial compensation in the case of occupational exposure to HIV. Education Physicians should keep their knowledge of AIDS and HIV infection up to date. Physicians should educate patients and the general public in the prevention of AIDS by informing them of means available to protect against the risk of HIV infection and to avoid further transmission of the virus. Health authorities should maintain an active public education program on AIDS that includes the school population and such initiatives as public service announcements by the media. Resources All levels of government should provide resources for adequate information and education of health care professionals and the public on HIV-related diseases; research into the prevention and treatment of HIV infection and AIDS; and the availability and accessibility of proper diagnosis and care for all patients with HIV infection. HIV antibody testing Physicians have an ethical responsibility to recommend appropriate testing for HIV antibody and to care for their patients with AIDS or refer them to where treatment is available. Physicians should provide counselling to patients before and after HIV antibody testing. Because of the potential psychologic, social and economic consequences attached to a positive HIV test result, informed consent must, with rare exceptions, be obtained from a patient before testing. However, the CMA endorses informed mandatory testing for HIV infection in cases involving the donation of blood, body fluids or organs. The CMA recognizes that people who have doubts about their serologic status may avoid being tested for fear of indiscretion and therefore supports voluntary non-nominal testing of potential HIV carriers on request. The CMA supports the Canadian Blood Service and Hema-Québec in their programs of testing and screening blood donations and blood products. Confidentiality in reporting and contact tracing The CMA supports the position that cases of HIV infection should be reported non-nominally with enough information to be epidemiologically useful. In addition, each confirmed case of AIDS should be reported non-nominally to a designated authority for epidemiologic purposes. The CMA encourages attending physicians to assist public health authorities to trace and counsel confidentially all contacts of patients with HIV infection. Contact tracing should be carried out with the cooperation and participation of the patient to provide maximum flexibility and effectiveness in alerting and counselling as many potentially infected people as possible. In some jurisdictions physicians may be compelled to provide detailed information to public health authorities. In such circumstances, the CMA urges those involved to maintain confidentiality to the greatest extent possible and to take all reasonable steps to inform the patient that their information is being disclosed. The CMA Code of Ethics (article 22) advises physicians that disclosure of a patient’s HIV status to a spouse or current sexual partner may not be unethical and, indeed, may be indicated when physicians are confronted with an HIV-infected patient who is unwilling to inform the person at risk. Such disclosure may be justified when all of the following conditions are met: the partner is at risk of infection with HIV and has no other reasonable means of knowing of the risk; the patient has refused to inform his or her sexual partner; the patient has refused an offer of assistance by the physician to do so on the patient's behalf; and the physician has informed the patient of his or her intention to disclose the information to the partner. The CMA stresses the need to respect the confidentiality of patients with HIV infection and consequently recommends that legal and regulatory safeguards to protect such confidentiality be established and maintained. Infection control Health care institutions and professionals should ensure that adequate infection-control measures in the handling of blood and body fluids are in place and that the rights of professionals directly involved in patient care to be informed of and protected from the risks of HIV infection are safeguarded. The CMA does not recommend routine testing of hospitalized patients. The CMA urges appropriate funding agencies to assess the explicit and implicit costs of infection control measures and to ensure that additional funds are provided to cover these extraordinary costs. Occupational exposure and the health care professional Health care workers should receive adequate financial compensation in the case of HIV infection acquired as a result of accidental occupational exposure. Physicians and other health care providers with HIV infection have the same rights as others to be protected from wrongful discrimination in the workplace and to be eligible for financial compensation for work-related infection. Physicians with HIV infection should consult appropriate colleagues to determine the nature and extent of the risk related to their continued involvement in the care of patients.
Documents
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Rural and remote practice issues

https://policybase.cma.ca/en/permalink/policy211
Last Reviewed
2020-02-29
Date
2000-05-09
Topics
Physician practice/ compensation/ forms
  1 document  
Policy Type
Policy document
Last Reviewed
2020-02-29
Date
2000-05-09
Replaces
Promoting medicine as a career for rural high school students (Resolution BD88-03-78)
Topics
Physician practice/ compensation/ forms
Text
CMA Policy : Rural and Remote Practice Issues The Canadian Medical Association (CMA) believes that all Canadians should have reasonable access to uniform, high quality medical care. The CMA is concerned, however, that the health care infrastructure and level of professional support in rural and remote areas are insufficient to provide quality care and retain and recruit physicians relative to community needs. The CMA has developed this policy to outline specific issues and recommendations that may help retain and recruit physicians to rural and remote areas of Canada and thereby improve the health status of rural and remote populations. The following 3 key issue areas are addressed in this policy: training, compensation and work/lifestyle support. Commitment and action by all stakeholders, including governments, medical schools, professional associations and others, are urgently required. Preamble Canadian physicians and other health care professionals are greatly frustrated by the impact that health care budget cuts and reorganization have had, and continue to have, on the timely provision of quality care to patients and general working conditions. For many physicians who practise in rural and remote communities, the impact is exacerbated by the breadth of their practice, as well as long working hours, geographic isolation, and lack of professional backup and access to specialist services. This policy has been prepared to help governments, policy-makers, communities and others involved in the retention and recruitment of physicians understand the various professional and personal factors that must be addressed to retain and recruit physicians to rural and remote areas of Canada. This policy applies to both general practitioners/family physicians as well as specialists. The CMA believes that this policy must be considered in the context of other relevant CMA policies, including but not limited to Physician Health and Wellbeing, Physician Compensation, Physician Resource Planning, Principles for a Re-entry System in Canadian Postgraduate Medical Education and Charter for Physicians. In addition, any strategies that are developed should not be coercive and must include community and physician input; they must also be comprehensive, flexible and varied to meet and respond to local needs and interests. Definitions Rural and remote There are no standard, broadly accepted terms or definitions for "rural" and "remote" since they cannot be sufficiently defined to reflect the unique and dynamic nature of the various regions and communities that could presumably be labelled as such. The terms "rural" or "remote" medicine may be applied to many things: the physicians themselves, the population they serve, the geography of the community or access to medical services. For each of these factors, there are a number of ways to define and measure rurality. For example, a 1999 CMA survey of rural physicians showed that the most frequently mentioned characteristics of a rural community were (1) high level of on-call responsibilities, (2) long distance to a secondary referral centre, (3) lack of specialist services and (4) insufficient family physicians. As another example, Statistics Canada defines rural and small town residents for some analyses as those living in communities outside Census Metropolitan Areas (population of at least 100 000) or Census Agglomerations (population between 10 000 and 99 999), and where less than 50% of the workforce commute to a larger urban centre. Medical school For the purposes of this policy, a medical school is understood to encompass the entire continuum of medical education, i.e., undergraduate, postgraduate, continuing medical education and maintenance of competence. Training Some Canadian studies have shown that medical trainees who were raised in rural communities have a greater tendency to return to these or similar communities to practise medicine. Some studies also show that individuals who do clerkships in rural or remote communities, or have some exposure to the rural practice environment during residency training, have a greater tendency to consider practising in rural or remote communities upon graduation. The CMA applauds those medical schools that promote careers in medicine to individuals from rural and remote areas and provide medical students and residents with exposure to rural practice during their training. Regular collaboration and communication among training directors for rural and remote programs, as well as rural medical educators and leaders from other health disciplines, are strongly encouraged so that rural training issues and possible linkages may be discussed. The benefits of rural training extend not only to those physicians who ultimately end up in rural practice; those who remain in urban areas also benefit by having an enhanced understanding of the challenges of rural and remote practice. As outlined in the CMA’s 1992 Report of the Advisory Panel on the Provision of Medical Services in Underserviced Regions, the CMA believes that partnerships among medical schools, the practising profession and communities need to be formalized, particularly since medical schools have a crucial role in helping to recruit and retain physicians for rural and remote communities. The medical school’s role in such a partnership takes the form of a social contract. This contract begins with the admission of students who demonstrate a prior interest in working in rural or remote communities and may come from these communities. It also includes the exposure of students to rural practice during their undergraduate and postgraduate training. It is followed by the provision of specialized training for the conditions in which they will work and ongoing educational support during their rural and remote practice. For these reasons, the CMA strongly encourages academic health science centres (AHSCs), provincial governments, professional associations and rural communities to work together to formally define the geographic regions for which each AHSC is responsible. The AHSCs are also encouraged to include within their mission a social contract to contribute to meeting the health needs of their rural or remote populations. Practising physicians are committed to lifelong learning. In order to preserve a high standard of quality care to their patients, they must be knowledgeable about new clinical and technological advances in medicine; they must also continually develop advanced or additional clinical skills in, for example, obstetrics, general surgery and anaesthesia, to better serve the patients in their communities, especially when specialist services are not readily available. There are many practical and financial barriers that physicians in rural and remote communities face in obtaining and maintaining additional skills training, including housing, practice and other costs (e.g., locum tenens replacement expenses) while they are away from work. The CMA strongly encourages governments to develop and maintain mechanisms, such as compensation or additional tax relief, to reduce the barriers associated with obtaining advanced or additional skills training. In light of these issues, the CMA recommends that 1. Universities, governments and others encourage and fund research into criteria that predispose students to select and succeed in rural practice. 2. All medical students, as early as possible at the undergraduate level, be exposed to appropriately funded and accredited rural practice environments. 3. Medical schools develop training programs that encourage and promote the selection of rural practice as a career. 4. Universities work with professional associations, governments and rural communities to determine the barriers that prevent rural students from entering the profession, and take appropriate action to eliminate or reduce these barriers. 5. A Web site based compendium of rural experiences and electives for medical students be developed, maintained and adequately funded. 6. Advanced skills acquisition and maintenance opportunities be provided to physicians practising in or going to rural and remote areas. 7. CMA divisions and provincial/territorial governments ensure that physicians who work in rural and remote areas receive full remuneration while obtaining advanced skills, including support for the locum tenens who will replace them. 8. Any individual formally enrolled in a Royal College of Physicians of Surgeons of Canada or College of Family Physicians of Canada program be covered by the collective agreement of their housestaff organization. 9. Providers, funders and accreditors of continuing medical education for rural physicians ensure that the continuing medical education is developed in close collaboration with rural physicians and is accessible, needs-based and reflective of rural physicians’ scope of practice. 10. Physicians who practise in rural or remote areas be given reasonable opportunities to re-enter training in a postgraduate program without any return-in-service obligations. 11. In order to promote mutual understanding, universities encourage teaching faculty to work in rural practices and that rural physicians be invited to teach in academic health science centres. 12. Medical schools develop training programs for both students and residents that encourage and promote the provision of skills appropriate to rural practice needs. 13. Medical schools support rural faculty development and provide full faculty status to these individuals. Compensation The CMA believes that compensation for physicians who practise in rural and remote areas must be flexible and reflect the full spectrum of professional and personal factors that are often inherent to practising and living in such a setting. These professional factors may include long working hours and the need for additional competencies to meet community needs, such as advanced obstetrics, anaesthesia and general surgery, as well as psychotherapy and chemotherapy. They may also include a high level of on-call responsibilities as well as a lack or total absence of backup from specialists, nurses and other complementary services that are usually available in an urban environment. Other challenges are professional isolation, limited opportunities for education or training, and high practice start-up costs. Also, if for a number of reasons a physician wishes to relocate to an urban setting, he or she may face billing restrictions as well as challenges in finding a replacement physician. Compensation for these factors is necessary to help retain physicians and recruit new ones. In addition, compensation should guarantee protected time off, paid continuing medical education or additional skills training, and locum tenens coverage. Any pool of locum tenens for rural and remote practice should be adequately funded and cross-jurisdictional licensure issues should be minimized. Living in a rural or remote community can be very satisfying for many physicians and their families; however, they must usually forgo — often for an extended period of time— a number of urban advantages and amenities. These include educational, cultural, recreational and social opportunities for their spouse or partner, their children and themselves. They may also face altered family dynamics due to a decrease or significant loss of family income if there are limited or no suitable employment opportunities for their spouse or partner. The CMA believes that all physicians should have a choice of payment options and service delivery models to reflect their needs as well as those of their patients. Physicians must receive fair and equitable remuneration and have a practice environment that allows for a reasonable quality of life. Although the CMA does not advocate one payment system for urban physicians and another for rural physicians, it believes that enhanced total compensation should be provided to physicians who work and live in rural and remote communities. In recognition of these issues, the CMA recommends that 14. Additional compensation to physicians working in rural and remote areas reflect the following areas: degree of isolation, level of responsibility, frequency of on-call, breadth of practice and additional skills. 15. In recognition of the differences among communities, payment modalities retain flexibility and reflect community needs and physician choice. 16. Financial incentives focus on retaining physicians currently practising in rural or remote areas and include a retention bonus based on duration of service. 17. Factors affecting the social and professional isolation of physicians and their families be considered in the development of compensation packages and working conditions. 18. Eligibility criteria for including physicians in a pool of locum tenens for rural or remote practice be developed in consultation with rural physicians. 19. Provincial/territorial licensing bodies establish portability of licensure for locum tenens and ensure that any fees or processes associated with licensure do not serve as barriers to interprovincial mobility. 20. Rural locum tenens programs be funded by provincial/territorial governments and include adequate compensation for accommodation, transportation and remuneration. As previously noted, some studies show that exposure to rural and remote areas during training influences students’ decision to practise in those communities upon graduation. The CMA is concerned, however, that travel and accommodation costs relating to these experiences place an undue financial burden on students. In addition, most physicians in rural and remote areas are already burdened with significant patient loads and find that they have limited time and resources to act as preceptors. The CMA believes that, to ensure the ongoing viability of student rural experiences, physician preceptors should be compensated for their participation and should not incur any additional expenses, such as student or resident accommodation costs. The CMA recommends that 21. Costs for accommodation and travel for student and resident rural training experiences in Canada not be borne by the trainees or the preceptors. 22. Training programs assume responsibility for adequately remunerating preceptors in rural or remote areas. Work and lifestyle support issues To retain and recruit physicians in rural and remote communities, there are issues beyond fair and adequate compensation that must be considered. It is crucial that the aforementioned working conditions, professional issues and array of personal and family-related issues be addressed. The ultimate goal should be to promote physician retention and implement measures that reduce the possibility of physician burnout. Like most people, physicians want to balance their professional and personal responsibilities to allow for a reasonable quality of life. Physicians in rural and remote areas practise in high stress environments that can negatively affect their health and well-being; as a consequence, the standard of care to their patients can suffer. The stress is intensified by excessive work hours, limited professional backup or support (including locum tenens), limited access to specialists, inadequate diagnostic and treatment resources, and limited or no opportunity for vacation or personal leave. At particular risk for burnout is the physician who practises in isolation. For these reasons many physicians, when considering practice opportunities, tend to seek working conditions that will not generate an excessive toll on their non-working lives. This reinforces the need for rural and remote practice environments that facilitate a balance between physicians’ professional and personal lives. In light of these issues, the CMA recommends that 23. Regardless of community size, there should always be at least 2 physicians available to serve the needs of the community. 24. Ideally, the on-call requirement for weekends never exceed 1 in 5 in any Canadian practice. (This is consistent with current CMA policy.) 25. Provincial/territorial governments have professional support and other mechanisms readily available to physicians who practise in rural and remote areas, such as sabbaticals and locum tenens. 26. Governments recognize the service of rural and remote physicians by ensuring that mechanisms exist to allow future access to practise in an urban area of their choice. The CMA believes that rural and remote physician retention and recruitment initiatives must address matters relating to professional isolation as well as social isolation for physicians and their families. This sense of isolation can increase when there are cultural, religious or other differences. For unattached physicians, zero tolerance and unreasonable restrictions with regard to relationships with potential patients can be disincentives to practise in rural or remote communities. Although the CMA believes that such policies and restrictions should be reviewed, the CMA encourages physicians to refer to the CMA policy on The Patient-Physician Relationship and the Sexual Abuse of Patients and the Code of Ethics of the Canadian Medical Association. Also, the CMA recommends that physicians abide by any provincial/territorial policies or legislation that may currently be in place. The medical services infrastructure in rural and remote areas is usually very different from that in urban settings. In addition to a lack of specialist services, physicians in these areas may often have to cope with a number of other factors such as limited or no appropriate diagnostic equipment or limited hospital beds. Physicians and their patients expect and deserve quality care. The diversity and needs of the populations, as well as the needs of the physicians who practise in rural and remote areas, must also be recognized and reflected in the infrastructure (e.g., demographic and geographical considerations). The CMA recommends that 27. A basic medical services infrastructure for rural and remote areas be defined, such as hospital beds, paramedical staff, diagnostic equipment, transportation, ready access to secondary and tertiary services, as well as information technology tools and support. 28. Provincial/territorial governments recognize that physicians who work in rural and remote areas need an environment that appropriately supports them in providing service to the local population.
Documents
Less detail

Promotion of healthy childhood

https://policybase.cma.ca/en/permalink/policy374
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Population health/ health equity/ public health
Resolution
GC99-42
That the Canadian Medical Association promote both medical and social interventions to ensure an optimal start to life and a physically, mentally and socially healthy childhood.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Population health/ health equity/ public health
Resolution
GC99-42
That the Canadian Medical Association promote both medical and social interventions to ensure an optimal start to life and a physically, mentally and socially healthy childhood.
Text
That the Canadian Medical Association promote both medical and social interventions to ensure an optimal start to life and a physically, mentally and socially healthy childhood.
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Access by the elderly to medical and supportive health care

https://policybase.cma.ca/en/permalink/policy377
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Population health/ health equity/ public health
Resolution
GC99-78
That the Canadian Medical Association adopt as policy the following principle: Access in old age. Older citizens in all parts of Canada should have timely access to medical and supportive health care services that are clinically appropriate. This includes: a) rapid access to primary medical care, b) access to a full range of medical, surgical, diagnostic, treatment and rehabilitative services, and c) access to specialized programs designed to address the physical and mental problems of old age. Access to clinically appropriate services should not be denied on the basis of age or disability.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Population health/ health equity/ public health
Resolution
GC99-78
That the Canadian Medical Association adopt as policy the following principle: Access in old age. Older citizens in all parts of Canada should have timely access to medical and supportive health care services that are clinically appropriate. This includes: a) rapid access to primary medical care, b) access to a full range of medical, surgical, diagnostic, treatment and rehabilitative services, and c) access to specialized programs designed to address the physical and mental problems of old age. Access to clinically appropriate services should not be denied on the basis of age or disability.
Text
That the Canadian Medical Association adopt as policy the following principle: Access in old age. Older citizens in all parts of Canada should have timely access to medical and supportive health care services that are clinically appropriate. This includes: a) rapid access to primary medical care, b) access to a full range of medical, surgical, diagnostic, treatment and rehabilitative services, and c) access to specialized programs designed to address the physical and mental problems of old age. Access to clinically appropriate services should not be denied on the basis of age or disability.
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Safety of genetically modified organisms

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

https://policybase.cma.ca/en/permalink/policy379
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Health information and e-health
Resolution
GC99-81
That the Canadian Medical Association urge the federal government to create an information program for Canadians on genetically modified organisms.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Health information and e-health
Resolution
GC99-81
That the Canadian Medical Association urge the federal government to create an information program for Canadians on genetically modified organisms.
Text
That the Canadian Medical Association urge the federal government to create an information program for Canadians on genetically modified organisms.
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Regulations for genetically modified organisms

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

https://policybase.cma.ca/en/permalink/policy398
Last Reviewed
2020-02-29
Date
2000-08-16
Topics
Health systems, system funding and performance
Resolution
GC00-195
That the federal, provincial and territorial governments work in partnership with the public, physicians and other health care stakeholders to determine which health care services will be publicly insured.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
2000-08-16
Topics
Health systems, system funding and performance
Resolution
GC00-195
That the federal, provincial and territorial governments work in partnership with the public, physicians and other health care stakeholders to determine which health care services will be publicly insured.
Text
That the federal, provincial and territorial governments work in partnership with the public, physicians and other health care stakeholders to determine which health care services will be publicly insured.
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Evaluating international medical graduates competencies

https://policybase.cma.ca/en/permalink/policy455
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Health human resources
Resolution
GC99-29
That the Canadian Medical Association support efforts to evaluate the competencies of international medical graduates prior to licensure in Canada by applying equivalent evaluation standards to international medical graduates as those used for graduates of Canadian medical schools so that the safety of the public is assured.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Health human resources
Resolution
GC99-29
That the Canadian Medical Association support efforts to evaluate the competencies of international medical graduates prior to licensure in Canada by applying equivalent evaluation standards to international medical graduates as those used for graduates of Canadian medical schools so that the safety of the public is assured.
Text
That the Canadian Medical Association support efforts to evaluate the competencies of international medical graduates prior to licensure in Canada by applying equivalent evaluation standards to international medical graduates as those used for graduates of Canadian medical schools so that the safety of the public is assured.
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Addressing professional issues of Canadian physicians and medical practice

https://policybase.cma.ca/en/permalink/policy465
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Physician practice/ compensation/ forms
Resolution
GC99-60
That the Canadian Medical Association be the national focus for enhancing organized medicine's effectiveness in addressing the variety of professional issues facing Canadian physicians and medical practice.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
1999-08-25
Topics
Physician practice/ compensation/ forms
Resolution
GC99-60
That the Canadian Medical Association be the national focus for enhancing organized medicine's effectiveness in addressing the variety of professional issues facing Canadian physicians and medical practice.
Text
That the Canadian Medical Association be the national focus for enhancing organized medicine's effectiveness in addressing the variety of professional issues facing Canadian physicians and medical practice.
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Default setting for water heaters

https://policybase.cma.ca/en/permalink/policy1583
Last Reviewed
2020-02-29
Date
2000-12-09
Topics
Population health/ health equity/ public health
Resolution
BD01-07-78
That the Canadian Medical Association urges provincial and territorial governments to amend existing building/plumbing codes, to require the default setting of newly installed residential hot water heating devices be set at a maximum of 49 degrees Celsius (120 Fahrenheit).
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
2000-12-09
Topics
Population health/ health equity/ public health
Resolution
BD01-07-78
That the Canadian Medical Association urges provincial and territorial governments to amend existing building/plumbing codes, to require the default setting of newly installed residential hot water heating devices be set at a maximum of 49 degrees Celsius (120 Fahrenheit).
Text
That the Canadian Medical Association urges provincial and territorial governments to amend existing building/plumbing codes, to require the default setting of newly installed residential hot water heating devices be set at a maximum of 49 degrees Celsius (120 Fahrenheit).
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Maskwachees Declaration on aboriginal/indigenous health

https://policybase.cma.ca/en/permalink/policy1584
Last Reviewed
2020-02-29
Date
2000-12-09
Topics
Population health/ health equity/ public health
Resolution
BD01-07-79
The Canadian Medical Association supports the Maskwachees Declaration in principle and requests federal and provincial/territorial governments to act in accordance with its recommendations for the promotion of physical activity, physical education, sport and recreation among Aboriginal peoples.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
2000-12-09
Topics
Population health/ health equity/ public health
Resolution
BD01-07-79
The Canadian Medical Association supports the Maskwachees Declaration in principle and requests federal and provincial/territorial governments to act in accordance with its recommendations for the promotion of physical activity, physical education, sport and recreation among Aboriginal peoples.
Text
The Canadian Medical Association supports the Maskwachees Declaration in principle and requests federal and provincial/territorial governments to act in accordance with its recommendations for the promotion of physical activity, physical education, sport and recreation among Aboriginal peoples.
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Sexual and reproductive health

https://policybase.cma.ca/en/permalink/policy1585
Last Reviewed
2020-02-29
Date
2000-12-09
Topics
Population health/ health equity/ public health
Resolution
BD01-07-81
That the Canadian Medical Association encourage Health Canada to develop and implement a national strategy on sexual and reproductive health.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
2000-12-09
Topics
Population health/ health equity/ public health
Resolution
BD01-07-81
That the Canadian Medical Association encourage Health Canada to develop and implement a national strategy on sexual and reproductive health.
Text
That the Canadian Medical Association encourage Health Canada to develop and implement a national strategy on sexual and reproductive health.
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Medical Council of Canada Qualifying Exam Part II

https://policybase.cma.ca/en/permalink/policy1651
Last Reviewed
2020-02-29
Date
2000-12-09
Topics
Population health/ health equity/ public health
Resolution
BD01-07-85
That the Canadian Medical Association reaffirm its support for the need for the Medical Council of Canada Qualifying Exam Part II and continue to remain neutral as to its timing.
Policy Type
Policy resolution
Last Reviewed
2020-02-29
Date
2000-12-09
Topics
Population health/ health equity/ public health
Resolution
BD01-07-85
That the Canadian Medical Association reaffirm its support for the need for the Medical Council of Canada Qualifying Exam Part II and continue to remain neutral as to its timing.
Text
That the Canadian Medical Association reaffirm its support for the need for the Medical Council of Canada Qualifying Exam Part II and continue to remain neutral as to its timing.
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Guidelines for assessing health care system performance

https://policybase.cma.ca/en/permalink/policy218
Last Reviewed
2019-03-03
Date
2000-08-12
Topics
Health systems, system funding and performance
  1 document  
Policy Type
Policy document
Last Reviewed
2019-03-03
Date
2000-08-12
Topics
Health systems, system funding and performance
Text
Guidelines for Assessing Health Care System Performance July 2000 In recent years, Canadians have expressed a loss of confidence in the ability of the health care system to meet their needs. At the same time, governments, health professionals, patients and the public are demanding greater accountability from the system and those responsible for how it currently functions. Attempts to respond to these concerns have highlighted the fact that the development and evolution of the system have not been based on assessment of performance or outcome measurements. Through proper assessment, the capacity and performance of the health care system can be evaluated to identify opportunities for improvements in quality of care, health outcomes or both. These improvements should be based on sound decision-making using the best available information. The following guidelines have been created by the CMA in consultation with a broad group of stakeholders to serve as guiding principles for those involved in the establishment and ongoing development of health care system performance processes. 1) Recognizing that the ultimate goal of the health care system is to improve health, assessment of the system's performance and capacity must address structure, process and outcomes in the following domains: clinical services; governance; management; finances; human, intellectual and physical capital; and stakeholder perception and satisfaction. 2) Assessment of health care system performance must be comprehensive throughout the continuum of care at all levels(f1) and involving all activities related to providing care. 3) The issues of privacy and confidentiality of patient information must be addressed at all levels as outlined in the Principles for the Protection of Patients' Personal Health Information. 4) Assessment of health care system performance must enhance accountability (f2) among administrators, patients, payers, providers and the public. 5) Assessing the performance of the health care system requires information that is reliable, valid, complete, comprehensive and timely. The information used for the purpose of assessing health care system performance must be continually evaluated and audited in a transparent process. 6) An independent group (f3) (f4) working with an advisory body (or bodies) composed of representative stakeholders should be responsible for overseeing the definition, collection and custodianship of data and the interpretation and dissemination of health care system performance assessment. 7) The advisory body (or bodies) must rely on the best available evidence, which may include or be limited to expert opinion in the areas of data definition and collection, privacy, analysis and interpretation (f5) in assessment of health care system performance. 8) In the assessment of health care system performance, and in particular with respect to the interpretation of information, the advisory body (or bodies) should place heavy emphasis on the viewpoints of relevant peer groups. 9) The processes of data collection, analysis, interpretation and communication to administrators, patients, payers, providers and the public should be systematic and ongoing. 10) The process of assessing health care system performance should be evaluated on an ongoing basis to determine whether it is achieving the desired effects on quality of care and health outcomes. (Footnotes) 1-Provider, institutional, regional, provincial and national levels. 2-Accountability entails the procedures and processes by which one party justifies and takes responsibility for its activities (Emanuel EJ, Emanuel LL. What is accountability in health care? Ann Intern Med 1996;124:229). 3-Without ownership or equity in the group being evaluated and without financial incentives related to the content of the evaluation. 4-Chosen through a transparent process. 5-Must include consideration of relevant legislation and regulations.
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Smokeless tobacco

https://policybase.cma.ca/en/permalink/policy481
Last Reviewed
2019-03-03
Date
1987-12-12
Topics
Population health/ health equity/ public health
Resolution
BD88-03-64
That the Canadian Medical Association alert the public to the serious health hazards associated with the uses of smokeless tobacco; AND That the Canadian Medical Association approach the federal government to request that mandatory health warnings and the advertising restrictions proposed for other tobacco products apply equally to smokeless tobacco products.
Policy Type
Policy resolution
Last Reviewed
2019-03-03
Date
1987-12-12
Topics
Population health/ health equity/ public health
Resolution
BD88-03-64
That the Canadian Medical Association alert the public to the serious health hazards associated with the uses of smokeless tobacco; AND That the Canadian Medical Association approach the federal government to request that mandatory health warnings and the advertising restrictions proposed for other tobacco products apply equally to smokeless tobacco products.
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That the Canadian Medical Association alert the public to the serious health hazards associated with the uses of smokeless tobacco; AND That the Canadian Medical Association approach the federal government to request that mandatory health warnings and the advertising restrictions proposed for other tobacco products apply equally to smokeless tobacco products.
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Training physicians to practice in urban and rural settings

https://policybase.cma.ca/en/permalink/policy506
Last Reviewed
2019-03-03
Date
1987-12-12
Topics
Population health/ health equity/ public health
Resolution
BD88-03-80
That the Canadian Medical Association encourage Canadian undergraduate and postgraduate medical education programs to train physicians who have the appropriate knowledge and skills to meet the health care needs of the Canadian public in both urban and non-urban settings.
Policy Type
Policy resolution
Last Reviewed
2019-03-03
Date
1987-12-12
Topics
Population health/ health equity/ public health
Resolution
BD88-03-80
That the Canadian Medical Association encourage Canadian undergraduate and postgraduate medical education programs to train physicians who have the appropriate knowledge and skills to meet the health care needs of the Canadian public in both urban and non-urban settings.
Text
That the Canadian Medical Association encourage Canadian undergraduate and postgraduate medical education programs to train physicians who have the appropriate knowledge and skills to meet the health care needs of the Canadian public in both urban and non-urban settings.
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General Agreement on Trade in Services (GATS) and the Canadian Health Care System : Submission to the Minister of International Trade

https://policybase.cma.ca/en/permalink/policy1973
Last Reviewed
2019-03-03
Date
2000-12-15
Topics
Health systems, system funding and performance
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2019-03-03
Date
2000-12-15
Topics
Health systems, system funding and performance
Text
The method a country chooses to fund and deliver health care demonstrates the values of its citizens and the type of nation that they wish to live in. Canadians, through their elected representatives, have placed a high value on a single-payer, tax-financed health care system with a delivery system that is essentially private and not-for-profit. The principles providing the underpinnings of the system are embodied in the Canada Health Act (CHA) and include the following: universality, comprehensiveness, access, portability and public administration. Since the passing of the CHA, Canadians have grown increasingly passionate about these principles and have demonstrated time and again that these principles are in close alignment with their values. Canadians have chosen tax-based financing for their health care system as it relates to hospital and physician services. The provincial and federal governments, through federal government transfers such as equalization payments and the Canada Health and Social Transfer and through provincial taxation, fund the various organizations and health care providers that deliver health care. Therefore the financing of the health care system has been socialized and publicly administered as opposed to privatized through compulsory private insurance. This indicates that Canadians view health care as not just an ordinary good, such as an automobile or a house that they pay for based on their own financial resources, but as a good whose cost should be shared by the community on the basis of the ability to pay of individuals. For those two components that are most likely to create true financial hardship for families and individuals, hospital services and physician services, the overwhelming majority of the funding is from public sources as opposed to private sources. When it comes to the health services that are subject to the provisions of the CHA, namely hospital services and physicians' services, Canada has chosen a predominantly private delivery approach. Physicians are largely self-employed and operate within a private sector solo or group practice while community and teaching hospitals are largely private not-for-profit organizations. Most Canadian hospitals are governed by voluntary boards of trustees and are owned by voluntary organizations, municipal or provincial authorities or religious orders. 2.0 CANADIAN VALUES The evolution of Canada's health care system has been profoundly influenced by Canadian values and as a result so will its future. The Prime Minister's National Forum on Health produced a series of documents on Canada's health care system including analyses that delved into Canadian values regarding health care and Canada's health care system in particular. The following quotes are from Graves, Frank L. Beauchamp, Patrick, Herle, David, "Research on Canadian Values in Relation to Health and the Health Care System" Canada Health Action: Building on the Legacy, Papers Commissioned by the National Forum on Health, "Volume 5 - Making Decisions, Evidence and Information". These quotes exemplify the importance of health and the health care system in the hearts and minds of Canadians. "There is a broad consensus that the Canadian health care system is a collective accomplishment, a source of pride, and a symbol of core Canadian values. The values of equality, access, and compassion are salient to perceptions of the system and often held in contradistinction to perceptions of the American system. Moreover, the system is seen as relatively effective and sound. It may be the only area of current public endeavour which is seen as a clear success story." p. 352 "The public perceptions of problems in the health care system reflect many of the themes evident in broader concerns about government. One of these themes is a growing wariness of "expert" prescriptions for the health care system." p. 353 "This finding reconfirms a consistent conclusion of other research in this area - the gap between expert rationality and public values. It would be prudent to acknowledge the public's entrenched resistance to a purely economic mode on health care." p. 354 "A number of key conclusions are evident. First, people were generally loath to trade-off elements of the current system against the promise of better or fairer future performance." p. 355 "The public will be resistant to a rational discourse on these cost issues because they are more likely to see these issues in terms of higher-order values. The evidence suggests that further dialogue will tilt the debate more to values than economics. The public will insist on inclusion and influence in this crucial debate and they will reject elite and expert authority." p. 356 "In response to a question on how health care was different from other commodities and services sold in the marketplace, participants agreed that its main difference lies in the fact that it was directly related to "life and death"." p. 370 "Most simply did not want efficiency to be the driving force in health policy." p. 378 "The focus group discussions augmented the belief that health care is more about values than economics." p. 389 "Although other competing priorities emerged over the period of the discussion, it is equality of access that serves as the primary source of this pride. The "Canadian" values are wrapped up in equality of access - everybody gets relatively equal care when they are sick and nobody has to lose their house to pay their hospital or doctor bill. It is this feature of the system which is seen to most distinguish it from the American model (which is the point of comparison)." p. 393 "Many people readily acknowledge that their belief in egalitarianism is restricted to health care and that they are not troubled by wide discrepancies based on ability to pay or status in other areas of society. They have no trouble isolating health care in this way because they see health care as something of a completely different character than housing or automobiles or vacations." p. 393 "There is an overwhelming consensus among Canadians about the importance of equality of access as the defining characteristic of our system. That consensus is premised upon the assumption that quality is a given, as they have perceived it to be in the past." p. 395 "It is also true that, since Canadians recognize that a truly private system like the U.S. version might provide even greater levels or quality of freedom of choice to at least some citizens, they are choosing to sacrifice some of that from the system in order to provide equality of access to a universal system." p. 396 Clearly, Canadians value their health care system and the principles that it is based on. 3.0 IMPLICATIONS FOR TRADE LIBERALIZATION The core values that Canadians have expressed in relation to the health care system raise certain issues as to the impact of trade liberalization on those core values. Following is an analysis based on an examination of the various modes of trade. 3.1 Modes of Trade in Services The Uruguay Round of trade negotiations leading to the World Trade Organization's creation in 1995 classified services into 160 sectors. Health services are classified as a sector. In addition, trade in insurance services may affect health services where a market for health insurance exists. The General Agreement on Trade in Services (GATS) distinguishes among four modes of trade in services. Each is briefly described below, together with examples, (involving the mythic countries 'A' and 'B') from the health sector. [TABLE CONTENT DOES NOT DISPLAY PROPERLY. SEE PDF FOR PROPER DISPLAY] Mode Example 1 Cross-border trade - provision of diagnosis or treatment planning services in country A by suppliers in country B, via telecommunications ('telemedicine') 2 Consumption abroad - movement of patients from country A to country B for treatment 3 Commercial presence - establishment of hospitals in country A whose owners are from country B, i.e. foreign direct investment 4 Presence of natural persons1 - service provision in country A by health professionals who have emigrated from country B [TABLE END] To date, Canada has made no commitments in the health services sector. Commitments in general have been shallow in the health sector in comparison to the most liberalized sectors, telecommunications and financial services, reflecting in part the substantial uncertainty about how such commitments will affect health care systems. Many of the countries that have undertaken health sector commitments have opted for enshrining the status quo, or even the status quo with commitments that include language proficiency requirements for health care professionals. Some WTO Members, however, have made more extensive commitments, driven in part by the hope that this will facilitate development of export opportunities and importation of foreign capital and know-how. Where developing countries have made such commitments, the general lack of resources appears to be a far more potent barrier to trade than the presence or absence of such commitments. 3.2 GATS and the Health System: Role of Insurance and Health System Structure To understand trade implications for the health sector, it may be helpful to distinguish between three functions that undergird all health systems: regulation/stewardship, financing, and service provision. Since the inception of Medicare, Canadians have received their health care through a system of private providers regulated under statutes. This links them closely to a financing system comprised largely of public funds in the form of general taxation revenues disbursed to health care providers by provincial and territorial governments and drawn from provincial and federal revenues through the progressive income tax system. The regulatory/stewardship established by the Canada Health Act and provincial regulation is pivotal to the system's structure. For example, building private hospitals need not be explicitly banned because funding levers make this a difficult business proposition as services provided there would not be automatically covered by provincially managed insurance schemes. A further useful distinction arises between input goods and services (drugs, devices, health care personnel, cleaning, laundry etc.) and the output of health care services. It is difficult to argue that the cleaning of hospitals is fundamentally part of the output of health services, rather it is similar to cleaning of other facilities and is increasingly performed by commercial entities in contractual relationships with health care facilities. These commercial entities include firms with foreign ownership or shareholders. Similarly many of the drugs and devices used in Canadian health care facilities are traded goods, moving in international trade from foreign-based suppliers and being accompanied by Canadian goods exported to other health care systems. Another input into the health care system is medical education. Physicians have to be trained so that Canadians have access to appropriate physician resources. There is some concern about the effects of GATS on the medical education enterprise and the quality of medical education currently delivered in Canada. As well, there is international recognition of Canada's expertise in medical education and evaluation and that this is a part of the health care system that Canada should be exporting. 4.0 RESPONDING TO GATS: POTENTIAL IMPLICATIONS In responding to GATS, it is helpful to consider each of the four modes of trade in health services, current levels of trade, and how GATS liberalization, (i.e. commitments by the government of Canada) could impact Canada's health care system. Mode 1 - Cross-border supply Cross border supply of health services, where the provider (health care professional) and consumer (patient) are in different jurisdictions has recently moved from the realm of science fiction to reality with advances in telemedicine. However, certain services, particularly those involving direct patient contact (nursing, rehabilitation professionals) are unlikely to be provided, regardless of advances in telemedicine. Cross-border supply appears most relevant to services involving diagnosis and treatment planning. For example, a physician in Canada may digitize radiology films and send them for interpretation to a radiologist in the Caribbean or South Asia. Similarly, several experiments within Canada have attempted to use telediagnosis to spare families long trips from remote communities to consult with highly specialized paediatricians. If this were to occur across national borders with exchange of payment for services, it would constitute a form of international services trade. Current limits on telemedicine's growth are essentially no longer technological but rather the regulatory/stewardship issues of professional certification and payment systems for services rendered. A commitment under mode 1 would do nothing to address either of these questions, particularly the first as governments retain full authority to establish licensing and certification regimes for professionals. Within Canada, payment has been hampered by provincial insurance plan insistence that the doctor-patient encounter must occur in such a way that both are in the same physical space. At present, efforts have been directed to establishing cross-border recognition of professional accounting certification, fueled in large part by the concentration of accounting services work within a handful of multinational firms on behalf of their increasingly globalized clients. By contrast, similar efforts directed to social sector professions are unlikely given the atomistic nature of the professionals and the institutions and organizations where they work. The absence of a concerted desire for such cross-border recognition, coupled with the powerful role of governments in regulating not only certification but also numbers of health care professionals, suggests cross-border recognition will remain unlikely for the foreseeable future. That having been said, a commitment by Canada and other countries to mode 1 liberalization could increase pressure on licensing authorities to develop programs of cross-border recognition. If this were to happen the export of telemedicine services outside of Canada would represent physician resources that would not be available to Canadians. Given the physician workforce issues that Canada is presently facing such a commitment could exacerbate an already difficult position. In addition, there are other implications that would have to be determined through stakeholder consultation, for example: provider legal liability and malpractice insurance, patient privacy and confidentiality of medical records to name a few. Mode 2 - Consumption abroad Individual Canadians have long sought care in other jurisdictions, most notably the United States. This is typically paid for from private health insurance or out of pocket funds. Changes to provincial insurance reimbursement for out-of-country care have dramatically limited publicly funded consumption abroad by Canadians. Two exceptions to this are treatment for specific rare conditions and, in several provinces, contracting for radiation therapy services with American institutions. Liberalization under mode 2 would do little for Canada in affecting the outward flow of Canadian patients to the US given the ease with which Canadians can cross the Canada-US border to purchase medical care. Similarly, opportunities for Canadian professionals and facilities to attract additional foreign patients are unlikely to grow substantially should a mode 2 commitment be made. The obvious growth potential for Canadian physicians and facilities lies in the USA but has been substantially limited by two synergistic factors. First is the non-portability of insurance coverage, both publicly financed Medicare/Medicaid benefits and most market-purchased insurance. Exclusion from health maintenance organizations' (HMOs) networks of providers are a further impediment for Canadian providers seeking to attract American consumers. Should the United States be willing to commit to the generalized portability of Medicare benefits, Canada would be a logical destination for American consumers seeking care, but that would be contingent on a commitment from the United States or other action regarding portability, rather than a specific mode 2 commitment by Canada. Commitments in this direction may, however, only be made if similar commitments are made by potential trading partners for health services, notably Canada and Mexico. A commitment by Canada and other countries, especially the United States, to mode 2 liberalization could change the business plans or strategies to attract foreign patients by some physicians especially certain niche subspecialists. Such a change could result in access difficulties for Canadian patients as providers substitute higher-paying foreign patients for Canadian ones for which payment is fixed by provincial insurance plans. Mode 3 - Commercial presence Commercial presence, usually through foreign direct investment (FDI), is often necessary for providing services such as banking or supply chain management. FDI in Canada's health service sector is relatively insignificant and that would appear unlikely to change with a mode 3 commitment. As with several of the other modes of trade, the regulatory and stewardship environment creates structural impediments to FDI, specifically concerning which services will be paid for in which facilities, that a mode 3 commitment is unlikely to remove. A related area for the health system is that of consulting services, where multinational, foreign-origin firms already play a substantial role in providing various forms of management consulting services. While some hospital boards are reported to have been approached regarding the outsourcing of their management to foreign management services firms, the extent of implementation to date has been minimal. Should hospital management be outsourced in this way or hospital facilities networked through supra-facility organizations, American based firms are logical candidates for such work and can be expected to bring with them substantial experience in shaping and constraining physician decision-making, particularly around access to expensive procedures. Mode 3 commitments are arguably neither necessary nor sufficient for such a change in hospital governance and management when compared to the power of provincial government regulation and financing mechanisms. If Canada made a mode 3 commitment, provincial governments would still have substantial latitude to regulate financing and provision of services, so long as these regulations applied to all potential suppliers, regardless of country of origin, thus ensuring national treatment. However, the full ramifications of such a commitment remain largely unknown and there appears little to be gained by Canada in making such commitments. Mode 4 - Presence of natural persons Presence of natural persons, specifically physicians and other health professionals, is one of the most pressing issues in health systems around the world. For countries like South Africa, emigration of physicians hamstrings efforts to deliver health services. For parts of Canada, immigration of those physicians has been essential to providing Canadians with health care, particularly in rural and remote areas. Nevertheless, mode 4 commitments are unlikely to be particularly useful for health human resource planning. For destination countries like Canada, a mode 4 commitment to liberalize immigration of natural persons, specifically health sector professionals, does not bind that country to forego national systems of certification and licensure. Moreover, existing systems of visas and work authorizations offer far more effective control over inflows than would a mode 4 commitment. Similarly, Canadian physicians who wish to emigrate, typically to the US, do so in the absence of a Mode 4 commitment by either country. Of concern to Canadians is the increased recognition of physician shortages as demonstrated by the fact that several provinces have increased medical school enrolment. Therefore any measures that would make it easier for physicians and other health care professionals to leave Canada and to practice elsewhere, especially the United States, could exacerbate an already tight supply of human health resources in several provinces. After a decade of efforts to reduce the number of physicians in Canada, assessments of Canadian physician supply are increasingly identifying shortages or, at the very least, chronic undersupply, in rural areas. Substantial numbers of foreign-trained physicians already reside in Canada but are unable to practice due to some combination of limited language skills, insufficient training, or 'queuing' for the various transition requirements imposed on international medical graduates (IMGs) by provincial licensing authorities. Commitments by Canada in this area however could result in pressure on licensing authorities to modify their requirements with potential implications on quality of care. Again, there is little to be gained for Canada to pursue commitments in this area until the ramifications are fully explored. Additional Considerations: Two areas that are to be explored are: 1) cross-sectoral horse trading, and 2) equity perceptions. 'Cross-sectional horse trading' refers to countries offering commitments in one sector in return for commitments in other, unrelated sectors. As an example, Canada may wish to increase its access to foreign markets for financial or telecommunications services and face the choice of putting the health services sector 'into play' as part of negotiating on matters unrelated to health services. This would be potentially disastrous if Canada were to undertake specific health services commitments in the rush to secure benefits in other sectors without attention to the federal-provincial cooperation and coordination to ensure that such commitments did not undermine the foundations of Canada's health system. Such cooperation and coordination appears to be becoming increasingly difficult and the pressure of a GATS commitment perceived to be negotiated by persons outside the health sector and health ministry would seem a surefire way to increase that difficulty. The second issue, equity perceptions, arises from the confluence of increasing concern among Canadians about access to their health care system and the likely additional concern that would arise if Canadian physicians were perceived to be favouring foreign patients over Canadian patients. The clearest example of access concerns to date is likely that of ophthalmology services where the opportunities for these specialists to provide non-insured laser treatment to American citizens may have reduced the services available to provincially insured Canadians. Non-insured care, whether for Canadians or foreign patients is a growing part of physician revenues, but pushing for its expansion through a mode 2 commitment under GATS appears unlikely to generate benefits sufficient to offset the potential negatives when compared with other methods of expanding revenue from non-insured services. 5.0 CONCLUSION The Government of Canada's bargaining position regarding health services in relation to the ongoing liberalization of trade in health services through the GATS will evolve from an assessment of the opportunities and costs associated with various levels of commitment. A major factor in the equation are the values of Canadians and their affinity for the publicly funded health care system. 6.0 RECOMMENDATION "The Canadian Medical Association (CMA) recognizes that trade liberalization can have positive economic impacts on the Canadian economy, however the type of healthcare system that Canadians and health care providers want is of primary concern whereas the goals of trade liberalization in health services is of a secondary nature. Recognizing that the GATS process is an on-going and long-term approach to trade liberalization, the CMA recommends that the Federal government undertake extensive consultative sessions with the Canadian public and healthcare providers. Such a consultation process would help answer questions as to the implications of trade liberalization and would provide feedback as to what level of trade liberalization in health care services is consistent with Canadian values." 1 Mode 4: "Presence of 1Natural Persons" - this covers the conditions under which a service supplier can travel in person to a country in order to supply a service. Source: http://gats-info.eu.int/gats-info/gatscomm.pl?MENU=hhh
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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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