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Policies that advocate for the medical profession and Canadians


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Advance care planning

https://policybase.cma.ca/en/permalink/policy13694
Date
2017-05-27
Topics
Ethics and medical professionalism
Population health/ health equity/ public health
  1 document  
Policy Type
Policy document
Date
2017-05-27
Replaces
Advance care planning (2015)
Topics
Ethics and medical professionalism
Population health/ health equity/ public health
Text
With the advent of technology allowing for the extension of life, and as a result of the increasing importance of personal autonomy, decisional capacity, and informed consent and the growing awareness of issues related to quality of life and dying, Canadians have become increasingly interested in expressing their wishes regarding their health care and having more input into decisions about their care should they become incapable. Advance care planning (ACP) can help patients to achieve these goals. The CMA supports development of a strategy for ACP1 in all provinces and territories. ACP leads to better concordance between patients' wishes and treatments provided,2,3 decreased anxiety for families,4 decreased moral distress for health care providers,5 decreased hospitalization rates of nursing home residents3 and fewer unnecessary medical treatments.3,6,7 ACP is at the intersection of the provision of health care, ethical values and legal rights and duties. In particular, it involves the acknowledgement of essential aspects of autonomy, informed consent, and respect of patients' care wishes now and in the future, and their intentions if they become incapable.8,9 The balancing of the need to obtain informed consent for a treatment option in the present with the need to respect health care preferences that were stated in the past has been addressed using various clinical, legal and institutional approaches across Canadian jurisdictions." Physicians10 can play a significant role in ACP throughout the course of the patient-physician relationship, including in the pediatric setting. At any time, outcomes of the planning process can be documented and/or the patient can appoint a substitute decision-maker in writing. These documents can be identified as advance directives, personal directives or powers of attorney for personal care11 (hereinafter all will be referred to as advance directives). An advance directive does not remove the need for a physician to obtain consent before providing a treatment to a patient, except in an emergency. As stated in the Canadian Medical Protective Association's consent guide: "[U]nder medical emergency situations, treatments should be limited to those necessary to prevent prolonged suffering or to deal with imminent threats to life, limb or health. Even when unable to communicate in medical emergency situations, the known wishes of the patient must be respected."12 While much of the focus of ACP is on making care decisions and nominating proxy decision-makers in case the patient becomes incapable of making decisions in the future, ACP has much more utility. ACP conversations13 can assist patients in determining treatment trajectories and making decisions about the intensity level of interventions in their current care. Providers can have discussions with patients and their families about proposed treatments in the context of the patient's communicated goals and wishes. The process of ACP also helps patients and their families to become familiar with the language and processes used to make cooperative health care decisions. SCOPE OF POLICY This policy aims to provide guidance on key considerations pertinent to ACP in a way that is consistent with a physician's ethical, professional and legal obligations. This is a complex subject: physicians should be aware of the legislation in the jurisdiction in which they practise, the standards and expectations specified by their respective regulatory authority, as well as the policies and procedures of the setting(s) in which they practise (e.g., regional health authority, hospital). GENERAL PRINCIPLES 1. ACP is a process of (a) respecting patients' wishes through reflection and communication, (b) planning for when the patient cannot make health care decisions and (c) discussion with friends, family and professionals; (d) it may result in a written document.5 It informs the substitute decision-maker and provides information for the clinician to consider in the provision of care within the bounds of the law. 2. Although often associated with the end of life, ACP represents the expression of a patient's wishes for any future health care when the patient is incapable. It expresses the patient's values and beliefs regarding current care decisions and provides information that can inform any decisions that must be made during an emergency when the patient's consent cannot be obtained. For these reasons, ACP should occur throughout a person's lifetime. 3. Respect for patients' dignity and autonomy is a cornerstone of the therapeutic physician-patient relationship. Patients' right to autonomous decision-making has become embedded in ethical frameworks, consent legislation and case law.14 Respect for the wishes of an incapable patient constitutes a preservation of autonomy and promotes trust between the physician and patient.15 4. The way in which the act of obtaining consent is weighed against the patient's stated wishes as outlined during the ACP process varies according to the jurisdiction in which the patient and physician are located. EDUCATION 1. Given the practical, ethical and legal complexities of ACP, physicians, medical learners should be supported in becoming familiar with ACP and comfortable in engaging in the process with their patients. To this end, CMA supports the development of training in ACP and efforts to make it available to all physicians and medical learners.16 For practising physicians and residents, many resources are available, for example: a. Advance Care Planning in Canada: A National Framework b. Facilitating Advance Care Planning: An Interprofessional Educational Program c. Information from the Health Law Institute of Dalhousie University on the regulatory policies and legislation of individual provinces and territories d. A comprehensive collection of Canadian resources compiled by the Speak Up campaign of the Advance Care Planning in Canada initiative e. Pallium Canada's Learning Essential Approaches to Palliative Care module on ACP In the case of medical students, the CMA supports the position of the Canadian Federation of Medical Students that end-of-life training is an essential facet of undergraduate medical education. 2. The issue of the supervision of medical learners practising ACP should be clarified, as considerable ambiguity currently exists.17 Medical learners would benefit from unified national guidelines concerning the nature of their participation in ACP, especially regarding end-of-life care. In the case of medical students, the CMA agrees with the recommendation of the Canadian Federation of Medical Students that supervision be mandatory during conversations about end-of-life care. 3. The CMA calls for more research on the outcomes associated with the provision of ACP training to physicians and medical learners. 4. The CMA recommends that governments and institutions promote information and education on ACP to patients and their substitute decision-makers. PROFESSIONAL AND LEGAL RESPONSIBILITY 1. While respecting patients' values, all physicians are expected to encourage their patients to engage in ACP with them. ACP is not a one-time event. The nature of the conversation between the physician and the patient and the regularity with which they discuss the subject will depend on the patient's health status. Family physicians and physicians have ongoing care relationships with chronically ill patients are particularly well placed to have regular discussions with their patients about their beliefs, values and wishes. An effective exchange of information between family physicians (and other physicians who work in the community with outpatients) and acute or tertiary care physicians would assist in ensuring patient's wishes are considered. 2. ACP, in particular advance directives, are at the intersection of medicine and the law. Physicians should recognize this and ask patients whether they have an advance directive or have done any ACP. 3. There is wide variation across jurisdictions in terms of the requirements and procedures for ACP; therefore, physicians should inform themselves about any relevant legislation and the scope of the requirement to obtain consent within that jurisdiction when carrying out ACP. INSTITUTIONS 1. The CMA supports institutional processes that recognize and support ACP. Support for ACP includes developing a consistent process for the exchange of information about patients' wishes and advance directives among health care providers, as patients traverse sectors and locations of care. Patients with a written advance directive must be identified and the advance directive integrated fully within the patient's records18 so that it is available across the institution (and ideally the health care system). The CMA advocates for the inclusion of advance care directive functionality as a conformance and usability requirement for electronic medical record vendors.19 Provinces and territories should be encouraged to establish robust organizational processes and resources for patients in all locations of care and strong province- or territory-wide policy, such as in Alberta.20 2. Institutions and other organizations should encourage health care providers to ask patients to bring their advance directive to appointments at the same time they ask them to bring a list of their medications or other medical information. 3. The CMA supports institutional/organizational audits of structures, processes and outcomes related to ACP as an important step in improving the quality and frequency of ACP activities. ROLE FOR GOVERNMENTS 1. The CMA supports infrastructures enabling ACP, including funding that will support ACP and other end-of-life discussions. 2. The CMA promotes the incorporation of ACP into future federal and provincial/territorial senior strategies and dementia and/or frailty strategies. 3. The CMA supports the development of ACP metrics and their future inclusion in Accreditation Canada standards. GLOSSARY Advance care planning (ACP) Advance care planning is a term used to describe a process of reflection, communication, conversation and planning by a capable individual with family, friends and professionals about their beliefs, values and wishes for a time when they no longer have the mental capacity to make decisions about their health care. ACP can also involve the naming of a substitute decision-maker.8 Advance directive The legislated term "advance directive" has different names, definitions and legal authority across the country. For example, in British Columbia an advance directive is a written legal document that provides a mechanism for capable patients to give directions about their future health care once they are no longer capable. 21 As such, in BC an advance directive may, under certain circumstances, be considered "equivalent to consent to treatment and may be acted upon directly by a health care provider without consultation with an SDM [substitute decision-maker]." 8 In Alberta it is called a personal directive. In Ontario, "advance directive" is a generic non-legal term and refers to communications that may be oral, written or in other forms.8 In Quebec, advance care directives are legally binding, as set out in the Act respecting end-of-life care, which recognizes "the primacy of freely and clearly expressed wishes with respect to care. . ."22 Current legislation does not allow for medical assistance in dying to be requested by an advance directive.23 The CMA acknowledges that considerable public, expert and legal debate exists around the issue. Informed consent To obtain informed consent, physicians must provide adequate information to the patient or capable decision-maker about the proposed procedure or treatment; the anticipated outcome; the potential risks, benefits and complications; and reasonable available alternatives, including not having the treatment; and they must answer questions posed by the patient. Consent is only informed if there is disclosure of matters that a reasonable person in the same circumstances would want to know.24 Consent must be given voluntarily, must not be obtained through misrepresentation or fraud, must relate to the treatment and must be informed. Substitute decision-maker (SDM or agent or proxy) A substitute decision-maker is a capable person who will make health care decisions on behalf of an incapable individual. In all jurisdictions the health care provider must take reasonable steps to become aware of whether or not there is a substitute decision-maker before providing health treatment to an incapable patient. Legally there are implementation differences across the country. For example, in BC a substitute decision-maker is appointed through a representation agreement, in Alberta through a personal directive and in Ontario through a power of attorney for personal care. Approved by the CMA Board of Directors May 2017 1 Canadian Medical Association. Policy resolution GC14-25 - strategy for advance care planning, palliative and end-of-life care. Ottawa (ON): The Association; 2014. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2016 Oct 17) 2 Houben CHM, Spruit MA, Groenen MTJ, et al. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc 2014;15:477-89. 3 Martin RS, Hayes B, Gregorevic K, et al. The effects of advance care planning interventions on nursing home residents: a systematic review. J Am Med Dir Assoc 2016;7:284-93. 4 Mack JW, Weeks JC, Wright AA, et al. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol 2010;28(7):1203-8. 5 Canadian Hospice Palliative Care Association. Advance care planning in Canada: national framework. Ottawa; The Association; 2010. 6 Teo WSK, Raj AG, Tan WS, et al. Economic impact analysis of an end-of-life programme for nursing home residents. Palliat Med 2014;28(5):430-7. 7 Zhang B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med 2009;169(5):480-8. 8 Wahl J, Dykeman MJ, Gray B. Health care consent and advance care planning in Ontario. Toronto (ON): Law Commission of Ontario; 2014. 9 Canadian Medical Association. CMA Code of Ethics (update 2004). Ottawa: The Association; 2004. 10 Physician involvement is not mandatory in the process. However, it is important for physicians to engage with their patients in ACP as this can facilitate change in patients' ACP behaviour and understanding. 11 Wahl JA, Dykeman MJ, Walton T. Health care consent, advance care planning, and goals of care practice tools: the challenge to get it right. Improving the last stages of life. Toronto (ON): Law Commission of Ontario; 2016. 12www.med.uottawa.ca/sim/data/Images/CMPA_Consent_guide_e.pdf 13 Frank C, Puxty J. Facilitating effective end-of-life communication - helping people decide. CJS Journal of CME 2016;6(2). Available: http://canadiangeriatrics.ca/wp-content/uploads/2017/02/Facilitating-Effective-End-of-Life-Communication---Helping-People-Decide.pdf (accessed 2017 April 25). 14 Fleming v Reid (1991) 82 DLR (4th) 298 (CA ON); Cuthbertson v Rasouli, 2013 SCC 53; Malette v Shulman (1990), 72 OR (2d) 417; Starson v Swayze (2003) 1 SCR 722. 15 Harmon SHE. Consent and conflict in medico-legal decision-making at the end of life: a critical issue in the Canadian context. University of New Brunswick Law Journal 2010;60(1):208-29. 16 Canadian Medical Association. Policy resolution GC13-69 - training in advance care planning. Ottawa (ON): The Association; 2013. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2016 May 26). 17 Touchie C, De Champlain A, Pugh D, et al. Supervising incoming first-year residents: faculty expectations versus residents' experiences. Med Educ 2014;48(9):921-9. 18 Canadian Medical Association. Policy resolution GC14-19 - advance care plans. Ottawa (ON): The Association; 2014. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2016 May 26). 19 Canadian Medical Association. BD14-05-163 Advance care directive functionality. Ottawa (ON): The Association; 2014. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2016 May 26). 20 Conversations matter. Edmonton (AB): Alberta Health Services. Available: http://goals.conversationsmatter.ca.s3-website-us-east-1.amazonaws.com/ (accessed 2017 May 19). 21 Health Care (Consent) and Care Facility (Admission) Act, RSBC 1996, c 181, s.3 22 Act respecting end-of-life care, S-32.0001. Government of Quebec. Available : http://legisquebec.gouv.qc.ca/en/ShowDoc/cs/S-32.0001 23 An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) S.C. 2016, c.3. Ottawa: Government of Canada; 2016. Available: http://canlii.ca/t/52rs0 (accessed 2016 Oct 17) 24 Riebl v Hughes, [1980] 2 SCR 880; Hopp v Lepp, [1980] 2 SCR 192.
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Assisted reproduction (Update 2001)

https://policybase.cma.ca/en/permalink/policy197
Last Reviewed
2018-03-03
Date
2001-05-28
Topics
Ethics and medical professionalism
  1 document  
Policy Type
Policy document
Last Reviewed
2018-03-03
Date
2001-05-28
Topics
Ethics and medical professionalism
Text
Like all scientific and medical procedures, assisted human reproduction has the potential for both benefit and harm. It is in the interests of individual Canadians and Canadian society in general that these practices be regulated so as to maximize their benefits and minimize their harms. To help achieve this goal, the Canadian Medical Association (CMA) has developed this policy on regulating these practices. It replaces previous CMA policy on assisted reproduction. Objectives The objectives of any Canadian regulatory regime for assisted reproduction should include the following: (a) to protect the health and safety of Canadians in the use of human reproductive materials for assisted reproduction, other medical procedures and medical research; (b) to ensure the appropriate treatment of human reproductive materials outside the body in recognition of their potential to form human life; and (c) to protect the dignity of all persons, in particular children and women, in relation to uses of human reproductive materials. Principles When a Canadian regulatory regime for assisted reproduction is developed, it should incorporate the following principles: For the regulation of assisted reproduction, existing organizations such as medical licensing authorities, accreditation bodies and specialist societies should be involved to the greatest extent possible. If the legislation establishing the regulatory regime is to include prohibitions as well as regulation, the prohibition of specific medical and scientific acts must be justified on explicit scientific and/or ethical grounds. If criminal sanctions are to be invoked, they should apply only in cases of deliberate contravention of the directives of the regulatory agency and not to specific medical and scientific acts. Whatever regulatory agency is created should include significant membership of scientists and clinicians working in the area of assisted reproduction. Elements of a Regulatory Regime The regulation of assisted reproduction in Canada should include the following elements: Legislation to create a national regulatory body with appropriate responsibilities and accountability for coordinating the activities of organizations that are working in the area of assisted reproduction and for carrying out functions that other organizations cannot perform. The development and monitoring of national standards for research related to human subjects including genetics and reproduction. The regulatory body would work closely with the Canadian Institutes of Health Research, other federal and provincial research granting councils, the National Council on Ethics in Human Research and other such organizations. The development and monitoring of national standards for training and certifying physicians in those reproductive technologies deemed acceptable. As is the case for all post-graduate medical training in Canada, this is appropriately done through bodies such as the Royal College of Physicians and Surgeons of Canada and the College of Family Physicians of Canada. The licensing and monitoring of individual physicians. This task is the responsibility of the provincial and territorial medical licensing authorities which could regulate physician behaviour in respect to the reproductive technologies, just as they do for other areas of medical practice. The development of guidelines for medical procedures. This should be done by medical specialty societies such as the Society of Obstetricians and Gynaecologists of Canada (SOGC) and the Canadian Fertility and Andrology Society (CFAS). The accreditation of facilities where assisted reproduction is practised. There is already in Canada a well functioning accreditation system, run by the Canadian Council on Health Services Accreditation, which may be suitable for assisted reproduction facitilies. Whatever regulatory body is established to deal with assisted reproduction should utilize, not duplicate, the work of these organizations. In order to maximize the effectiveness of these organizations, the regulatory body could provide them with additional resources and delegated powers. Criminalization The CMA is opposed to the criminalization of scientific and medical procedures. Criminalization represents an unjustified intrusion of government into the patient-physician relationship. Previous attempts to criminalize medical procedures (for example, abortion) were ultimately self-defeating. If the federal government wishes to use its criminal law power to regulate assisted reproduction, criminal sanctions should apply only in cases of deliberate contravention of the directives of the regulatory agency and not to specific medical and scientific acts.
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Boxing (Update 2001)

https://policybase.cma.ca/en/permalink/policy192
Last Reviewed
2018-03-03
Date
2001-05-28
Topics
Population health/ health equity/ public health
  1 document  
Policy Type
Policy document
Last Reviewed
2018-03-03
Date
2001-05-28
Replaces
Boxing (1986)
Topics
Population health/ health equity/ public health
Text
The CMA recommends to the appropriate government authorities that all boxing be banned in Canada. Until such time, strategies to prevent injury should be pursued. Background The CMA considers boxing a dangerous sport. While most sports involve risk of injury, boxing is distinct in that the basic intent of the boxer is to harm and incapacitate his or her opponent. Boxers are at significant risk of injuries resulting in brain damage. Boxers are susceptible not only to acute life-threatening brain trauma, but also to the chronic and debilitating effects of gradual cerebral atrophy. Studies demonstrate a correlation between the number of bouts fought and the presence of cerebral abnormalities in boxers. There is also a risk of eye injury including long-term damage such as retinal tears and detachments. Recommendations: - CMA supports a ban on professional and amateur boxing in Canada. - Until boxing is banned in this country, the following preventive strategies should be pursued to reduce brain and eye injuries in boxers: - Head blows should be prohibited. CMA encourages universal use of protective garb such as headgear and thumbless, impact-absorbing gloves - The World Boxing Council, World Boxing Association and other regulatory bodies should develop and enforce objective brain injury risk assessment tools to exclude individual boxers from sparring or fighting. - The World Boxing Council, World Boxing Association and other regulatory bodies should develop and enforce standard criteria for referees, ringside officials and ringside physicians to halt sparring or boxing bouts when a boxer has experienced blows that place him or her at imminent risk of serious injury. - The World Boxing Council, World Boxing Association and other regulatory bodies should encourage implementation of measures advocated by the World Medical Boxing Congress to reduce the incidence of brain and eye injuries. - CMA believes that the professional responsibility of the physician who serves in a medical capacity in a boxing contest is to protect the health and safety of the contestants. The desire of spectators, promoters of the event, or even injured athletes that they not be removed from the contest should not influence the physician’s medical judgment. - Further long term outcome data should be obtained from boxers in order to more accurately establish successful preventive interventions. CMA encourages ongoing research into the causes and treatments of boxing-related injuries, and into the effects of preventive strategies.
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Charter of Shared Values: A vision for intra-professionalism for physicians

https://policybase.cma.ca/en/permalink/policy13858
Date
2017-12-09
Topics
Ethics and medical professionalism
  2 documents  
Policy Type
Policy document
Date
2017-12-09
Replaces
CMA Charter for Physicians (Update 1999)
Topics
Ethics and medical professionalism
Text
What is it? The CMA Charter of Shared Values aims to identify shared values and commitments to each other and to the profession to which physicians and learners can commit to promote trust and respect within the profession and for each other, and identify opportunities for engagement and leadership to promote civility and confront incivility within the profession. Why does it matter? The Charter is intended to further strengthen professional responsibilities in support of a unified and aligned profession. We achieve the highest degree of both individual and collective success when we work together, commit together and believe together; when we share a clearly articulated set of common values, virtues and principles; and when we subscribe to the same explicit and implicit understandings. Commitments to Each Other: Our most important shared values RESPECT As a physician, I will strive to be respectful; I will recognize that everyone has inherent worth, is worthy of dignity, and has the right to be valued and respected, and to be treated ethically; I will respect others and their personal and professional dignity; and I will aim to promote and model respect through collaborative training and practice. INTEGRITY As a physician, I will strive to act with integrity; I will act in an honest and truthful manner, with consistency of intentions and actions; and I will act with moral concern to promote and model effective leadership and to achieve a good outcome for patients. RECIPROCITY As a physician, I will strive to cultivate reciprocal relationships; I will be kind with my physician colleagues, and expect them to respond similarly; I will share and exchange my knowledge and experience with them; and I will be generous with them in spirit and in time. CIVILITY As a physician, I will strive to be civil; I will respect myself and others, regardless of their role, even those with whom I may not agree; I will enter into communication with my physician colleagues with an attitude of active and open listening, whether it be in person, in writing, or virtually; and I will accept personal accountability. Commitments to the Profession 1. Commitment to promoting a culture of respect and collegiality As a physician, I will strive to build a culture based on mutual respect and collegiality where physicians treat each other as people in a shared endeavor, and promote civility. I will strive to:
Cultivate respectful, open, and transparent dialogue and relationships
Take responsibility for promoting civility and confronting incivility within the profession
Recognize the relative value among family medicine and specialties and across the educational spectrum, and of the profession’s shared contributions within health systems
Model healthy and supportive training and practice environments 2. Commitment to promoting a culture of self-care and support As a physician, I will strive to build a culture of self-care and support where physicians are empowered to ask for help and are supported to care for their own physical, mental, and social well-being. I will strive to:
Value physician health and wellness and promote a professional culture that recognizes, supports, and responds effectively to your needs and colleagues in-need
Cultivate an environment of physical and psychological safety, conducive to challenging the status quo, as well as encouraging help-seeking behaviours, without fear of negative reprisal
Recognize that both individual and system-level barriers contribute to health and wellness-related issues and advocate for cultural and systemic change to remove barriers 3. Commitment to promoting a culture of leadership and mentorship As a physician, I will strive to foster a culture of leadership and mentorship across the career life cycle. I will strive to:
Encourage and enable opportunities and participation in leadership roles across all levels of training, practice, and health system delivery
Promote and enable formal and informal mentorship opportunities and leadership training across all levels of training and practice
Value the exchange of knowledge and experience and encourage reflective relationships (bi-directional) across all levels of training and practice 4. Commitment to promoting a culture of inquiry and reflection As a physician, I will strive to foster a culture of inquiry and reflection that values and enables reflective practice, individually and collectively. I will strive to:
Value and enable collective inquiry and self-reflection to effect meaningful change
Foster curiosity and exploration to identify strengths and capabilities of teams and health systems to generate new possibilities for action
Cultivate strong connections and relationships between, and meaningful interactions with, colleagues 5. Commitment to promoting a culture of quality As a physician, I will strive to foster a culture of quality and quality improvement. I will strive to:
Foster intra- and inter-professional collaborations and promote collaborative models of care
Provide high quality patient care and have a view to continuous improvement at the practice and system level, and commit to developing and applying the skills and techniques of quality improvement
Understand that quality improvement is a critical and life-long part of education and practice; participate in maintaining professional standards in myself and my colleagues
Engage patients, families, and caregivers in the process of improvement 6. Commitment to valuing a culture of diversity As a physician, I will strive to foster a community of practitioners that reflects the diversity of the communities they serve. I will strive to:
Promote diversity within the profession to be receptive and responsive to the evolving (physical, emotional, cultural, socioeconomic) needs of our patient populations
Foster a training and practice environment where diverse and unique perspectives, across generations, cultures and abilities, are heard and appreciated
Foster diversity in leadership across the full spectrum of leadership roles within the profession and health systems
Value the importance of these perspectives within the medical profession, even when they may not be my own patients, families, and caregivers in the process of improvement cma.ca/medicalprofessionalism
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Direct-to-consumer genetic testing

https://policybase.cma.ca/en/permalink/policy13696
Date
2017-05-27
Topics
Ethics and medical professionalism
  2 documents  
Policy Type
Policy document
Date
2017-05-27
Topics
Ethics and medical professionalism
Text
While genetic testing is typically provided in a clinical setting through the referral of a health care professional (HCP) or a regulated research project, a number of private companies now offer genetic testing services directly to consumers over the Internet. Direct-to-consumer (DTC) genetic testing is distinguished from clinical genetic testing ordered by a HCP in several ways: 1. DTC genetic tests are not regulated in Canada. The clinical validity and reliability of these tests varies widely, but DTC genetic testing companies make them available to consumers without distinguishing between those that may be useful to the management of one's health, those that have some limited health value, and those that are meant purely for recreational use. 2. Many of the tests advertised and sold via the Internet have not undergone clinical evaluation. 3. Marketing materials for these tests often imply that they have health value, but the terms of reference of some of the companies that offer them state that the tests are to be used for recreational purposes and many vendors do not guarantee the validity or reliability of their results. 4. Resale of personal health information and/or DNA samples is often an important part of the business model of companies that offer DTC genetic testing, raising concerns about patient privacy and insufficient or unclear disclosure of privacy terms. 5. Unlike genetic tests ordered and administered by HCPs, DTC genetic tests are ordered directly by the consumer, who most often has not consulted with a HCP as part of a clinical assessment, and the testing may not be clinically indicated. Some companies only agree to do testing if it has been ordered by a physician, but they will provide a phone conversation with one of their physicians (not based in Canada) if a consumer does not have access to a physician. When the testing is ordered by a physician, it will sometimes be ordered by the patient's personal physician. In such cases, this does not truly represent DTC genetic testing. 6. Without appropriate pre- and post-testing counselling by a HCP, consumers are left to interpret and act upon their results on their own. They might suffer psychological consequences if they overestimate their disease risk as a result of DTC. 7. As access to DTC genetic testing increases, Canadian HCPs (specifically primary care physicians) are faced with the challenge of appropriately counselling patients when they receive their test results. However, few physicians feel they have the necessary training and knowledge in genomics to provide adequate care in this area. Furthermore, these tests may have no clinical indication, produce uncertain results with ambiguous clinical applicability and have tenuous legal status, but they can potentially influence a patient's sense of well-being. GENERAL PRINCIPLES 1. The CMA is concerned with understanding, raising awareness of, and mitigating potential patient and societal harms that may arise from DTC genetic testing. 2. The CMA emphasizes the importance of the principle of protection of patient privacy and supports the right of Canadians to understand how their health information is being used by third parties, including insurance and DTC genetic testing companies. 3. The CMA believes that patients have the right to be fully informed about what a DTC genetic test can and cannot say about their health and that the scientific evidence on which a test is based should be clearly stated and easy to understand. 4. The CMA recommends regulation of both DTC genetic tests and the marketing of these tests through the development of a national framework that would include a combination of government and industry regulation with input from medical experts. 5. The CMA believes that unnecessary genetic testing should be avoided to ensure more appropriate use of health care resources. Even if a consumer pays directly for testing, any test result, even an incidental finding from a DTC genetic testing laboratory without clinical certification, may trigger a cascade of clinical investigations and lead to further unnecessary testing and inappropriate use of resources. 6. The CMA supports educational initiatives on DTC genetic testing for physicians practising in all specialties so that they can respond to patient queries about these tests and, when necessary, their results. PROTECTION OF PRIVACY * Privacy and confidentiality of patients' personal health information must be maintained. * Before a patient submits a sample to a DTC genetic testing company, the company should obtain express informed consent from the patient concerning the way in which their data will be collected and used, who will have access to the data and the interpreted results, what safeguards are in place to protect it, and how it will be disposed of in the event of a company/laboratory closure. * Patients have the right to a clear understanding of who owns the sample and the generated data, in particular whether their data will be sold or shared with third parties. If resale of personal health information and/or DNA samples is an important part of the business model of DTC-GC companies, this should be stated explicitly in terms understandable by the consumer. * DTC-GC companies that solicit Canadian consumers should be subject to the Personal Information Protection and Electronic Documents Act (PIPEDA). * The CMA encourages physicians to become familiar with privacy legislation affecting the use of DTC genetic tests by insurance companies and employers. ROLE OF PHYSICIAN * Physicians should generally avoid using DTC genetic tests unless they have been clinically and empirically validated. * Physicians who are presented with a patient's DTC genetic test results should take the following actions: o They should explain to their patient the limits of the specific test the patient used. If a physician does not know this information he/she should discuss with the patient the fact that DTC genetic test results are not necessarily obtained from an accredited laboratory or interpreted in a standardized way; therefore, the validity and clinical utility of the results may be highly variable for certain tests. o They should disclose their level of comfort in providing an accurate interpretation of the results. o They should assess whether the test results are clinically significant in the context of that patient's symptoms, signs, medical history and family history before deciding whether it is appropriate to formally consult a specialty provider such as a medical geneticist. o If a physician wishes to use the results of a test in their clinical assessment, they should ensure that the laboratory performing the test guarantees analytical reliability and validity. * Physicians should adhere to the following principles related to medically indicated genetic testing: o Physicians should generally avoid recommending and/or ordering DTC genetic tests if they do not have a clear understanding of the validity and limitations of the tests they select. o Physicians should follow best practice guidelines and make use of clinically valid tests, accredited laboratories and specialist referral(s), when appropriate. o Physicians must obtain informed consent from the patient before ordering any genetic test, assist the patient in interpreting the results, support the individual with respect to psychological and biological implications of the results, and refer the patient to appropriate resources. o Many genetic tests require pre- and post-test counselling, particularly (but not limited to) tests involving children, tests establishing carrier status or tests considered to be predictive. If a provider decides to order such testing, they also accept the responsibility for facilitating access to pre- and post-test counselling. ROLE OF GOVERNMENT * The CMA calls on the government to enact regulations based on Bill S-201 (An Act to prohibit and prevent genetic discrimination) that establish clear boundaries for the marketing, distribution, accreditation and third-party use of DTC genetic tests. * The CMA believes that it is the government's responsibility to ensure that Canadians are only offered reliable, accurate and medically relevant genetic testing services. * The CMA encourages the development of national standards for the reliability and validity of DTC genetic tests by relevant federal government agencies, in conjunction with interested stakeholders (e.g., geneticists and laboratory scientists, genetic counsellors, physicians, private and public laboratories, industry, and patient groups). * The CMA encourages the government to enact standards that can keep pace with the rapid development of technological innovation in genetic testing and genetics more generally. * The CMA encourages the government to enact standards that hold companies accountable for being transparent about their uses of data/DNA and the potential resale of such material. * The CMA encourages the government to enact standards that mandate that the type of testing (e.g., single-nucleotide polymorphism [SNP] analysis, targeted mutation testing, sequencing) be clearly labelled and that a clear explanation be provided of the type of information that can (or cannot) be obtained from such testing. SYSTEMS INFRASTRUCTURE * Genetic testing and the interpretation of the results of such testing are highly technical and complex processes. For this reason, the CMA believes that clinical testing laboratories that are used by DTC genetic testing companies must be accredited if the companies are to claim that their testing is valid. * The CMA believes that scientific evidence describing the validity and utility of a DTC genetic test should be clearly stated in language that is easy to understand. This information should include a clear statement of what a test can or cannot diagnose or infer, and statements about the validity of a specific test should be supported with references. A company that does not guarantee the reliability or validity of its test should not be allowed to make any (implicit or explicit) claims about the potential medical utility of its test and/or its potential to improve health. EDUCATION AND PUBLIC ENGAGEMENT * The CMA supports public education initiatives to increase patient awareness of the potential implications and limitations of DTC genetic testing for health purposes. The CMA supports increased genetics training for physicians to help them to further appreciate the complex issues involved and keep pace with the rapid changes in molecular genetics. Such training would support physicians to counsel patients who seek follow-up for their DTC genetic test results. Approved by the CMA Board of Directors May 2017 See also Background to CMA Policy on Direct-to-Consumer Genetic Testing BACKGROUND TO CMA POLICY DIRECT-TO-CONSUMER GENETIC TESTING See also CMA Policy PD17-05 Direct-to-Consumer Genetic Testing Some direct-to-consumer (DTC) genetic tests, such as "compatibility testing" for online dating, are purely recreational. Other tests, however, are marketed both as being for recreational use and as producing results that are useful to the management of one's health. This document concerns this second category of tests. The characteristics of these tests differ widely, and some of the companies that offer them clearly state that they do not guarantee the validity and reliability of their tests. As of January 2016, 246 companies offered some form of DNA test online.1 Many DTC genetic tests have started to penetrate the Canadian market, especially after the U.S. Food and Drug Administration issued a warning letter instructing some companies in the U.S. to cease providing unreliable health information that could potentially lead consumers to make misinformed decisions about their health, which caused some of these companies to seek out alternative markets.2 The increasing availability of DTC genetic tests in Canada presents several challenges, as the predictive value of most of the DTC genetic tests currently on the market is very low. Moreover, there is no standard model for the delivery and interpretation of the results of these tests. Greater regulatory guidance and protection is needed to ensure that individuals who choose to submit samples to DTC genetic testing companies are not adversely affected by information that is not necessarily predictive or even accurate. Survey research indicates that the general public is overwhelmingly interested in genetic testing technologies.3 Researchers predict that an increasing number of individuals will use DTC genetic testing as testing technologies continue to become more affordable and efficient.3 Since genetic issues tend to cross medical specialties, it often falls on primary care physicians to understand the role of genetics in clinical care.4 In fact, genetic testing companies often direct patients to discuss their results with their primary care physician.5 Patients not only seek out their primary care providers to discuss their genetic test results and obtain appropriate follow-up but also expect them to be able to answer questions about personal genome test results.6 Despite these expectations, health professionals' awareness and knowledge of DTC genetic tests remains low.7 Although DTC genetic tests are marketed under similar names, the genetic tests available in Canada have very different characteristics. Three types of tests are offered: (1) single-nucleotide polymorphism (SNPs) analysis, which assesses an individual's risk for common multifactorial diseases (e.g., diabetes, myocardial infarction), (2) targeted mutation analysis and (3) sequencing. Some are ordered directly by the consumer while others are pre-ordered by the consumer and the order is co-signed by a physician (the patient's physician or a physician who has never met the patient and whose services are provided by the company). SNP testing assesses for a number of genetic variants that are common in the general population and that have been identified in association studies to modify (increase or decrease) the risk of a given disease. Some DTC genetic testing companies explicitly state in their terms of service that they do not guarantee the accuracy or reliability of the test. This is due in part to deficiencies in the science underlying the tests and their interpretation. For example, the interpretation of SNPs analysis for common multifactorial diseases can only be as good as the science behind it. The scientific community has a long way to go before it will have identified all of the significant genetic risk factors and protective factors for these diseases. Because of this, a given consumer could receive greatly divergent risk interpretations.3 In the case of targeted mutation analysis and sequencing, the specific panels offered by DTC genetic testing companies may not include all of the clinically relevant genes and mutations. This could result in a consumer receiving harmful false reassurance. Test results may include information on genetic changes that are only weakly associated with disease, leading to undue anxiety. As such, the clinical and health value of DTC genetic testing continues to be debated despite consumer uptake of, and enthusiasm for, DTC genetic testing offered online. Currently, most DTC genetic testing services exist in regulatory limbo, benefiting from laws that tend to lag behind technological innovation. Questions about access to the information yielded by these tests have emerged as a particular concern. For some companies, an important part of the business model is to sell consumers' DNA along with the clinical information that the consumers provide via their interactive websites. Most Canadians are unaware of this: they pay for a test and do not expect that their data will later be sold. ISSUES ARISING IN CLINICAL CONTEXTS Studies have shown that physicians see a number of benefits with DTC genetic testing, but they also have concerns. The benefits physicians have identified include convenience, promotion of preventive medicine and the provision of personalized services.5 They are concerned about the reliability of test results, the provision of adequate information/counselling, patient anxiety if the results are misunderstood, inappropriateness of advertising, discrimination with respect to employment and insurance, the possible spread of beliefs such as genetic determinism, and the inappropriate disclosure of patients' genetic information.5 The following sections will address primary concerns identified by research and in practice. 1. Patient privacy Privacy is one of the top concerns of the general public about genetic testing.8 According to a 2010 report commissioned by the Office of the Privacy Commissioner of Canada, approximately 60% of patients indicated that privacy and discrimination fears would influence their decision to undergo genetic testing.9 The average Canadian consumer is not adequately informed that an important part of the business model of many DTC genetic testing companies is to build and sell their database of phenotypic information and DNA accumulated from their clients to third parties, such as biobanks or pharmaceutical companies. 1.1 Informed consent The increasing quantity, complexity and diversity of DTC genetic testing services pose challenges for informed consent because both specific and generic models do not meet ethical standards when applied to this type of service.10 Many companies bind their consumers to contracts that are activated once the website is viewed, a practice that challenges the adequacy of consent, as it is common for people to view a website without reading or even seeing its terms of reference.1 Consumers who present to genetic clinics tend not to question the validity of the results they have received from DTC genetic testing,11 which can be interpreted as an indication that consumers give their consent without reading or understanding the disclaimers made by the companies.11 Physicians are concerned that this lack of informed consent could compromise the confidentiality of personal health information, encourage requests for unnecessary medical tests and potentially cause distress to patients. 1.2 Insurance The insurance industry is of particular concern in the context of privacy and DTC genetic tests. A study of patients' perceptions of DTC genetic tests found that participants were concerned that genetic results could affect their health insurance premiums or lead to denial of coverage.12 Private insurance is fundamentally rooted in the practice of discriminating between clients on the basis of risk. While insurers have generally been entitled to request genetic information in the form of family history, to access medical files and to conduct medical tests,13 consumers have expressed the view that the rules governing access to genetic information should be stricter than for access to other forms of personal information.3 While there are studies that report cases of genetic discrimination, it is often unclear whether such treatment is perceived or actual.14. Thus, the consequences of genetic testing remain uncertain. Of particular concern is the potential for discrimination on the basis of results that may not be accurate and/or reliable. Although there is presently no evidence of widespread use of genetic testing by insurance companies,14experts agree that in the next 10 years public acceptance of the use of information from genetic testing will increase and it will become possible to more accurately interpret data from genetic tests (K. Boycott, J. Davies and K. Morin, CIHR Café Scientifique, unpublished remarks), threatening to alter the currently limited role that genetic testing plays in insurance company decision-making. Before policy-makers tackle the potential issues related to the use of DTC genetic testing, it is imperative that they start at ground level and explore options to regulate insurance companies' access to such tests. 2. Patient response 2.1 Interpretation of results and changes in behaviour Proponents of DTC genetic testing point to the potential for patients to make positive changes to their health as a result of learning about their genetic susceptibility to certain diseases. Findings of studies in this area, however, are inconsistent to date. While some studies have reported that there are some behaviour changes, it is important to keep in mind that early adopters of these services are likely to also be among those most motivated to make health-related changes.15 Recent evidence suggests the opposite response: the general population has a tendency to decrease healthy practices upon learning about a lower health risk, and they do not increase healthy practices when they learn that they have an increased health risk.15 Indeed, patients may make poorer health decisions if they are under the impression that they are not at risk for developing a certain disease; for example, they may avoid routine screening for breast or prostate cancer, or they may not follow exercise and diet advice. 16 These variations in behaviour can be largely attributed to the fact that there is an overarching risk that patients will misinterpret the data they receive from the testing companies. The problem with susceptibility tests in the context of DTC genetic testing is not only that the test results may cause psychological or physical harm but also that there is a possibility that patients will over-interpret their disease risk.10 Without expert guidance, the patient may not be able to evaluate their test results accurately enough to make informed health decisions.14 There is very little evidence to suggest that receipt of a DTC genetic test result produces sustained behavioural change.17 In fact, studies on psychological theories related to motivation do not consider disease risk information a useful tool for motivating patients to change their behaviour.15 Therefore, while receipt of DTC genetic test results may encourage patients to see their family physician and possibly undergo further consultation, the health care resources invested in interpreting results with limited clinical validity may not produce sustained behavioural changes, good or bad. 3. Resource allocation One of the stated goals of personalized medicine is to save health care systems money by facilitating the use of fewer but more effective treatments.18 However, greater demand for genetic testing, whether public or private, could produce the opposite effect: consumption of health care resources may increase as patients consult with their regular physician about results they obtained through a DTC company.16 Furthermore, physicians who are presented with DTC genetic test results by their patients have a legal and ethical obligation to do their due diligence and carry out a complete, clinically valid investigation, which may ultimately negate the cost savings that personalized medicine is expected to produce.16 Patients who participate in DTC genetic testing are likely to drive up the utilization of health care providers, as they seek out their primary care provider to discuss their results and they obtain follow-up care from a genetic counsellor.19,5 At least one study has suggested that there is an expectation that physicians will help patients to interpret their DTC genetic test results, and DTC genetic testing companies frequently direct patients to discuss their results with their physicians before acting upon their testing information.5 Consequently, the responsibility falls on primary care providers to discuss this technology with their patients.5 Primary care providers, however, believe that genetic specialists are the most appropriate providers of counselling for DTC genetic tests.14 While they acknowledge the benefits of DTC genetic tests, including the potential for test results to encourage patients to be more involved in their care and take responsibility for their health, they also agree that test results may encourage patients to seek unnecessary and potentially expensive follow-up tests.14 As a result, additional health care resources may be required to cope with the increased demand for medical follow-up.20 4. Physician education Although DTC genetic testing companies have been around since the early 2000s, levels of awareness among health care professionals vary, and knowledge and understanding of the services generally remain low.21 Research suggests that few physicians feel they have the necessary training and knowledge in genomics to provide adequate care in this area.17 A perceived lack of clinical utility appears to be a barrier to learning more about DTC genetic testing.6 Increased genetics training and awareness may allow physicians to better appreciate the complex issues involved and help them to better counsel patients who seek follow-up for their DTC genetic test results. 4.1 Topics that physicians want to learn about Most physicians are concerned about the privacy implications of DTC genetic testing, specifically health insurance and employment discrimination, which may affect their patients who present with a DTC genetic test.5 Therefore, important discussion points to include in a physician education program would be information on the risks of insurance and employment discrimination, legislation currently in place to protect against genetic discrimination, and guidelines for managing risk.6 Given the ease with which patients can access DTC genetic testing, it is essential to provide health professionals with appropriate education on the potential benefits and risks of DTC genetic testing and help them develop an approach to interpreting the results of such testing, so that they can protect their patients from harm and arrange follow-up appropriately.19 5. Legislative landscape in Canada Before May 2017, Canada did not have a law to specifically protect against genetic discrimination. Existing human rights and privacy law could only be ambiguously and tenuously applied to DTC genetic testing issues, including genetic discrimination and information collection, use and disclosure.14 The laws that regulate medical devices, such as the Food and Drugs Act, did not clearly apply in the context of DTC genetic tests either,2 because consumers are not purchasing genetic testing kits but rather they are purchasing testing services, which fall outside the scope of that legislation.22 As a result, there was limited evidence to form the regulations necessary to ensure the validity and utility of these tests. Fortunately, on May 4, 2017, Bill S-201 (hereinafter termed S-201), An Act to prohibit and prevent genetic discrimination,23 received Royal Assent and will soon become law. S-201 provides a basis for the creation of regulations concerning the validity and utility of DTC genetic tests. The bill prohibits the requirement that an individual submit to genetic testing or disclose the results of genetic tests in order to receive goods or services or in order to enter into or continue a contract or agreement, and it prohibits submission to genetic testing or disclosure of test results from being used as the basis of any specific conditions in a contract or agreement. S-201 amends the Canada Labour Code to protect employees from being required to undergo or disclose the results of genetic testing and amends the Canadian Human Rights Act to prohibit discrimination on the grounds of genetic characteristics.21 Legislation at a provincial level, however, may still be required. Private Member's Bill 127, An Act to amend the Human Rights Code with respect to genetic characteristics,24 was presented to the Legislative Assembly of the Province of Ontario in 2013 but did not move past the first reading. Federal and provincial privacy legislation (such as the federal Personal Information Protection and Electronic Documents Act, or PIPEDA) also plays a role in protecting against genetic discrimination by requiring an individual to consent to the collection, use or disclosure of personal information.25 Currently, the Office of the Privacy Commissioner of Canada does not support amending the Privacy Act or PIPEDA, on the grounds that these laws sufficiently apply to genetic information.23 While this legislative framework might provide some protection against genetic discrimination, there is a lack of clarity as to whether it strikes the appropriate balance between consumers' rights to privacy and the interests of insurers. Furthermore, the courts have yet to provide an opinion regarding the constitutionality of S-201 or to assist in the interpretation of privacy legislation in the context of DTC testing, because of the novelty of the service. It is uncertain if and how Bill S-201 will inform future regulations placed upon employers and insurers. Significant gaps in the legislative framework remain; in particular, privacy protection in Canada has yet to counterbalance the lack of consumer protection in Canadian insurance laws.22 While existing legislation may offer some protection, the absence of legal precedents creates uncertainty and leaves consumers to engage in DTC testing services at their own risk. May 2017 See also CMA Policy PD17-05 Direct-to-Consumer Genetic Testing REFERENCES 1 Phillips AM. Only a click away - DTC genetics for ancestry, health, love ... and more: a view of the business and regulatory landscape. Appl Transl Genom 2016;8:16-22. 2 US Food and Drug Administration. Warning letter. Silver Spring (MD): The Administration; 22 Nov 2013. Available: www.fda.gov/iceci/enforcementactions/warningletters/2013/ucm376296.htm (accessed 2017 May 19). 3 Caulfield T. Direct-to-consumer testing: if consumers are not anxious, why are policy makers? Hum Genet 2011;130:23-5. 4 Delaney SK, Christman MF. Direct-to-consumer genetic testing: perspectives on its value in healthcare. Clin Pharmacol Ther 2016; 99(2):146-8. 5 Powell KP, Cogswell WA, Christianson CA, et al. Primary care physicians' awareness, experience and opinions of direct-to-consumer genetic testing. J Genet Couns 2012;21(1):113-26. 6 Powell KP, Christianson CA, Cogswell WA, et al. Educational needs of primary care physicians regarding direct-to-consumer genetic testing. J Genet Couns 2012;21(3):469-78. 7 Jackson L, Goldsmith L, Skirton H. Guidance for patients considering direct-to-consumer genetic testing and health professionals involved in their care: development of a practical decision tool. Fam Pract 2014;31(3): 341-8. 8 Caulfield T, McGuire AL. Direct-to-consumer genetic testing: perception, problems, and policy responses. Annu Rev Med 2012; 63:23-33. 9 Office of the Privacy Commissioner of Canada. Analysis of privacy policies and practices of direct-to-consumer genetic testing companies: private sector databanks and privacy protection norms. Ottawa: The Office; March 2010. p. 6. 10 Bunnik EM, Janssens AC, Schermer MH. Informed consent in direct-to-consumer personal genome testing: the outline of a model between specific and generic consent. Bioethics 2014;28(7):343-51. 11 Brett GR, Metcalfe SA, Amor DJ, et al. An exploration of genetic health professionals' experience with direct-to-consumer genetic testing in their clinical practice. Eur J Hum Genet 2012;20(8):825-30. 12 Wasson K, Sanders TN, Hogan NS, Cherny S, Helzlsouer KJ. Primary care patients' views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study. J Community Genet. 2013;4:495-505 13 Lemmens T, Pullman D, Rodal R. Revisiting genetic discrimination issues in 2010: policy options for Canada [PowerPoint presentation]. Ottawa: Genome Canada; 15 June 2010. Available: www.genomecanada.ca/sites/default/files/pdf/en/gps_speakers_presentation/trudo-lemmens-daryl-pullman.pdf 14 Zinatelli F. Industry Code: Genetic testing information for insurance underwriting [Internet]. Toronto, ON: CLHIA; 2017 Jan 11. Available from https://www.clhia.ca/domino/html/clhia/CLHIA_LP4W_LND_Webstation.nsf/page/E79687482615DFA485257D5D00682400/$file/Industry%20Code%20Genetic%20Testing%20-%20Updated.pdf 15 Adams SD, Evans JP, Aylsworth AS. Direct-to-consumer genomic testing offers little clinical utility but appears to cause minimal harm. N C Med J 2013;74(6): 494-8. 16 Ram S, Russell B, Gubb M, et al. General practitioner attitudes to direct-to-consumer genetic testing in New Zealand. N Z Med J 2012;125(1364):14-26. 17 Caulfield T. Obesity genes, personalized medicine and public health policy. Curr Obes Rep 2015;4(3):319-23. 18 Caulfield T, Zarzeczny A. Defining 'medical necessity' in an age of personalised medicine: a view from Canada. Bioessays 2014;36(9):813-7. 19 Bloss CS, Schork NJ, Topol EJ. Direct-to-consumer pharmacogenomic testing is associated with increased physician utilisation. J Med Genet 2014;51(2):83-9. 20 Daly AK. Direct-to-consumer pharmacogenomic testing assessed in a US-based study. J R Coll Physicans Edinb 2014;44:212-3. 21 Jackson L, Goldsmith L, Skirton H. Guidance for patients considering direct-to-consumer genetic testing and health professionals involved in their care: development of a practical decision tool. Fam Pract 2014;31(3):341-8. 22 Mykitiuk R. Caveat emptor: direct-to-consumer supply and advertising of genetic testing. Clin Invest Med 2004;27(1):23-32. 23Parliament of Canada. Legislative summary of Bill S-201: An Act to prohibit and prevent genetic discrimination. Ottawa: Parliament of Canada; 2016 24 Parliament of Canada. Bill 127: An Act to amend the Human Rights Code with respect to genetic characteristics, 2nd Sess, 40th Leg, Ontario, 2013. 25 Personal Information Protection and Electronic Document Act (PIPEDA), S.C. 2000, C.5, para 5(3).
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Drug testing in the workplace (Update 2001)

https://policybase.cma.ca/en/permalink/policy194
Last Reviewed
2018-03-03
Date
2001-05-28
Topics
Ethics and medical professionalism
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
  1 document  
Policy Type
Policy document
Last Reviewed
2018-03-03
Date
2001-05-28
Replaces
Drug testing in the workplace (1992)
Topics
Ethics and medical professionalism
Pharmaceuticals/ prescribing/ cannabis/ marijuana/ drugs
Text
Health and safety in the workplace continue to be areas of concern to the CMA. The CMA recommends that educational programs on the risks of drug-related impairment to health and safety in the workplace be directed toward labour, management and the public in general. Occupations for which impairment resulting from drug use may constitute a serious hazard should be identified and designated as such. The association recommends that supervisors be trained to refer a worker in a safety-sensitive job for a health assessment if the supervisor has reasonable grounds to suspect impairment of the worker. Workers holding safety-sensitive jobs should be educated to report any departure from their usual state of health as well as any drugs (prescribed or otherwise) being taken to the occupational health physician or, in the absence of such, to the physician of the worker's choice. The CMA is opposed to routine pre-employment drug testing. It recommends that random drug testing among employees be restricted to safety-sensitive positions and undertaken only when measures of performance and effective peer or supervisory observation are unavailable. Drug testing should always be conducted in such a way as to protect confidentiality and should be undertaken with the subject's informed consent (except when otherwise required by law). The idea of drug testing among workers has developed from society's concern over the relation between drug use and impairment, with resultant risks to the worker, fellow workers and the public. Education: Since prevention is the principal and ultimate objective the association recommends that educational programs on the risks of impairment to health and safety in the workplace be directed toward labour, management and the public in general. Illicit drugs are not the only ones that may cause impairment. Certain prescription drugs and even some over-the-counter medications may affect a person's ability to carry out professional functions safely; such effects may vary considerably from one person to another. Alcohol is by far the most common impairing drug implicated in accidents; in addition, the scientific literature contains a growing body of information on impairment and dangers resulting from the use and misuse of various therapeutic medications. Far less is documented or known about the role of illicit drugs in work-related accidents. Safety-sensitive occupations: In most workplaces there are occupations for which impairment may constitute a serious hazard. Such occupations should be identified and designated as such. Workers who hold such safety-sensitive jobs must accept the fact that other workers and the public need to be protected from the hazards of impairment, whether from physical or psychologic ill health or from the use of drugs (over-the-counter, prescription or illicit). Performance assessment of safety-sensitive occupations: The CMA recommends that supervisors be trained to refer a worker in a safety-sensitive job for a health assessment if the supervisor has reasonable grounds (e.g., unsatisfactory performance or observed unusual behaviour) to suspect impairment of the worker. The examining physician may recommend that some tests (including tests for the presence of certain drugs) be carried out under pre-agreed protocols. Workers holding safety-sensitive jobs must be educated to report any departure from their usual state of health as well as any drugs (prescribed or otherwise) they may be taking to the occupational health physician or, in the absence of such, to the physician of the worker's choice. Testing: Any discussion of drug testing must take the following into account: If a quantitative test is to be used to determine impairment a limit must be established beyond which a person is deemed to be impaired. However, since the threshold of impairment varies from one person to another this variation should be taken into account when a worker is being assessed. The tests must be valid and reliable. They must be performed only in laboratories accredited for drug testing. The tests must provide results rapidly enough to be useful in deciding whether the person should continue to work. If different testing procedures are available and the differences between the validity and reliability are not significant the least intrusive alternative should be chosen. The test should be conducted in such a way as to ensure confidentiality and should be undertaken with the subject's informed consent (except when otherwise required by law). Pre-employment testing: The CMA opposes routine pre-employment drug testing for the following reasons: Routine pre-employment drug screening may not objectively identify those people who constitute a risk to society. The mass, low-cost screening tests may not be reliable or valid. The circumstances may not justify possible human rights violations. Random testing: The CMA believes that random drug testing among employees has a limited role, if any, in the workplace. Such testing should be restricted to employees in safety-sensitive positions and undertaken only when measures of performance and effective peer or supervisory observation are unavailable. Role of occupational health services: Occupational health physicians must not be involved in a policing or disciplinary role with respect to employee testing. CMA recommends that employers provide a safe environment for all workers. With the help of experts such as those from national and provincial agencies dedicated to dealing with substance abuse occupational health departments should develop lists of drugs known to cause short-term or long-term impairment, including alcohol. These lists should be posted prominently in the workplace, and workers should be advised that in the event of obvious impairment those involved in safety-sensitive occupations will be asked to undergo medical assessment. If testing for drugs is indicated refusal to submit to testing may result in a presumption of noncompliance with the health requirements of the job. Alcohol impairment should not be tolerated, and legislation should be considered that would set a legal blood alcohol level for safety-sensitive occupations. Breathalyzers or other detection methods could be used if alcohol impairment is suspected in a person holding safety-sensitive occupation. As stated previously, refusal to submit to testing may result in a presumption of noncompliance with the health requirements of the job. These measures should be discussed with labour and management. Labour should be expected to recognize drug-related impairment as a serious health and safety issue, and management should demonstrate its concern by ensuring access to treatment, prevention and educational programs such as employee assistance programs.
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Firearms control (Update 2001)

https://policybase.cma.ca/en/permalink/policy183
Last Reviewed
2018-03-03
Date
2001-05-28
Topics
Population health/ health equity/ public health
  1 document  
Policy Type
Policy document
Last Reviewed
2018-03-03
Date
2001-05-28
Replaces
Firearms control (1993)
Topics
Population health/ health equity/ public health
Text
FIREARMS CONTROL (UPDATE 2001) Summary Firearms are a major cause of death and injury in Canada and account for nearly 1,400 deaths annually. The CMA has made several recommendations to governments and other bodies undertaking legislative review and public policy change. These recommendations relate to the regulation of firearms, education for the safe handling of firearms, broad-based violence prevention programs, and research and information provision. In addition, the CMA has produced guidelines to assist physicians in identifying and counselling patients at risk of violent behaviour and in reporting patients at risk. Firearms are a major cause of death and injury in Canada.. The cost to society of firearm-related injury, particularly spinal cord and head injuries, is considerable. Over the short term, policy should focus on firearms and the user. Applying stringent controls on firearms, however, may have little effect on the rates of death and injury if the underlying problems of violence in society are not addressed. In an effort to accommodate both short-term and long-term solutions the CMA recommends the following to governments and bodies undertaking legislative review and public policy change. Regulation The object of regulation should be to deter people at risk for violent or self-destructive behaviour from having easy access to firearms. A regulatory policy should address (a) the acquisition of firearms (e.g., licensing of firearms and/or users, processes to screen would-be purchasers who are at risk), b) secure firearm and ammunition storage methods and modifications to firearms that would render them less accessible to children or those acting on violent impulses and (c) severe penalties for offenses such as the use of a firearm in the commission of a crime or an act of violence, including family violence. Education Training in safe handling of firearms is strongly recommended, particularly for all first-time firearm users. Broader-based education programs aimed at the prevention of violence (e.g., in schools) may also be efficacious and should be evaluated for their impact in reducing violence. Research and information provision CMA encourages research in a number of areas, including the following. Firearm surveillance: the types of firearms or classes of ammunition disproportionately involved in intentional deaths and injuries, the circumstances surrounding a firearm incident (e.g., argument between friends, alcohol involvement) and data on injuries and deaths. Determination of behavioural or environmental risk factors for violent behaviour: the relative risk or benefit of keeping a firearm at home for protection i.e.. the scientific assessment of the deterrence effect): The effects of factors such as alcohol, drug use and family history of violence on the risk of violent death; and how accurately experts can identify people at risk. Case-control and cohort studies on gun control, crime and the antecedents of violent behaviour. Evaluation of education programs that discourage firearm-related violence or promote safe handling of firearms. Role of physicians The CMA recommends that physicians consider the following guidelines. Management of patients at risk It is not always possible to identify people at risk of violent or self-destructive behaviour; however, the CMA recommends that physicians be alert to warning signs that a patient may be at risk and manage that patient accordingly. For example, always ask depressed patients about suicidal and homicidal thoughts and plans (asking will not plant ideas); admit suicidal patients to hospital, even against their will, particularly if they do not have supportive families who can monitor them at home; have the family remove all firearms from the home of a patient at risk; and monitor the patient frequently, writing small prescriptions if medication is required. Good clinical judgement and close follow-up are perhaps the most effective ways of managing a self-destructive or violent patient. Reporting of patients at risk No specific guidelines exist for the reporting of patients at risk of violent behaviour. The physician should consider whether the risk of harm to society (or a third party) posed by a patient outweighs that patient's right to confidentiality. Counselling and public advocacy A physician may be asked for a reference for an applicant of a firearms acquisition certificate. Before providing the reference the physician should consider the applicant carefully for risk factors, recommend appropriate firearms training and caution against the concomitant use of firearms, alcohol and other drugs. A physician should become an advocate for nonviolent conflict resolution. As research accumulates about the most effective interventions for nonviolent conflict resolution the health sector may be able to draw on this research to work to reduce violence in society. Like motor vehicle and bicycle safety, firearm safety is a public health issue. The CMA holds that physicians, as advocates for the health of Canadians, can help reduce firearm-related damage and address the concomitant underlying problem of violence in society.
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Guidelines for CMA's activities and relationships with other parties

https://policybase.cma.ca/en/permalink/policy234
Last Reviewed
2018-03-03
Date
2001-05-28
Topics
Ethics and medical professionalism
  1 document  
Policy Type
Policy document
Last Reviewed
2018-03-03
Date
2001-05-28
Topics
Ethics and medical professionalism
Text
Guidelines for CMA’s Activities and Relationships with Other Parties As the national voice of medicine in Canada, the CMA provides leadership for physicians, promotes the highest standards of health and health care for Canadians and acts as advocate for all Canadian physicians. In the furtherance of its purpose, the CMA conducts a variety of activities and has a variety of relationships with other parties. The CMA’s activities range from policy development to the delivery of products and services to physicians and the public. Its relationships with other parties range from the purchase of goods and services that support operations to partnerships that further or are consistent with its advocacy strategies. The CMA actively seeks out relationships with others in recognition of the benefits these bring in the attainment of the CMA’s purposes. Such benefits may include: - unifying the profession through relations with physician groups, including the divisions and affiliates - enabling a stronger advocacy voice in association with others - enhancing the CMA’s credibility with other parties - providing financial and human resources to support CMA activities - providing skills and capabilities that CMA may not possess - providing additional membership services. Activities or relationships with other parties and products and services produced through the activity or relationship (“activities or relationships”) that undermine the CMA’s reputation of professionalism, independence and quality are to be avoided, not only for their own sake but also because a diminishment of the CMA’s reputation impedes its ability to achieve its purposes. The following principles have been developed to help guide decisions about the kinds of activities CMA undertakes and about its relations with other parties, with the objective of ensuring the integrity and good reputation of the CMA. A process or processes will be developed to implement the principles, which will include the preparation of subdocuments on applying the principles to specific areas; for example, sponsorship, endorsement and coalitions. Principles The CMA should rigorously and actively pursue its laudable ends and seek out relationships with others to attain them with the caveat that activities or relationships that would tarnish the integrity or reputation of CMA or the medical profession or that would diminish the trust placed in them should be avoided. Conformity with CMA’s purpose The activity or relationship should further or support the CMA’s purposes as elaborated in its objects, vision and mission. The CMA’s purposes have been explicitly and widely agreed upon. The CMA holds itself to be, and encourages reliance that it is, an organization that pursues its specified purposes. Activities and relationships that do not further or support the CMA’s purposes have the potential to thwart these purposes in a number of ways, including inadequate accountability, inappropriate use of resources, unconstrained exercise of merely private judgement or inappropriate self-interest. 2. Medical professionalism and ethics The activity or relationship should be consistent with medical professionalism and with CMA’s Code of Ethics. The CMA is an association of physicians. When the CMA acts, it represents the medical profession. The CMA’s actions reflect upon the medical profession. The CMA’s stature and reputation are inextricably linked to the medical profession’s work, the professional stature of its member physicians and the trust Canadians place in their physicians. Engaging in activities or relationships that are inconsistent with medical professionalism and CMA’s Code of Ethics would erode trust in the CMA. Independence The activity or relationship should not undermine the CMA’s independence. To be a credible voice and influence and to be worthy of the trust and confidence of physicians and of the public, the CMA should be, and be seen to be, free of undue influence and in control of the decisions it makes. Undue influence occurs when one is induced to do or not do something that is contrary to what one would otherwise do if left to act freely. Undue influence deprives one of free agency and destroys free will such that it is rendered more the will of another than of one’s own. Activities and relationships that may undermine independence include: activities or relationships that provide revenue or benefit to the CMA such that ongoing dependency on the revenue or benefit impedes independence activities and relationships that create a product or service that is seen to be associated with the CMA but over which the CMA does not have final control or veto or the capacity to extricate itself Consistency with policy The activity or relationship should be consistent with CMA policy. The CMA develops policy in pursuance of its purposes; these should be referred to when making decisions in connection with activities or relationships. Conflicting goals and activities Relationships with parties whose goals or activities directly conflict with the CMA’s objects, mission or vision should be avoided. This does not preclude discussion with others or participation in events for the purposes of obtaining information, monitoring or lobbying. Transparency The terms and conditions of the activity or relationship should be transparent. Transparency promotes an openness to scrutiny and serves to enhance accountability and to discourage relationships or activities that could be considered problematic. The principle is generally applicable except in connection to matters related to competitive advantage, trade secret or a reasonable agreement of confidentiality. Compliance and accountability Processes must be in place to ensure that proposed and ongoing activities or relationships are appropriately reviewed for compliance with and clear accountability for these principles. These include the activities of the secretariat and the corporate subsidiaries.
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Guiding principles for the optimal use of data analytics by physicians at the point of care

https://policybase.cma.ca/en/permalink/policy11812
Last Reviewed
2020-02-29
Date
2016-02-27
Topics
Health information and e-health
  1 document  
Policy Type
Policy document
Last Reviewed
2020-02-29
Date
2016-02-27
Topics
Health information and e-health
Text
Electronic tools are now being used more widely in medicine than ever before. A majority of physicians in Canada have adopted electronic medical records (EMRs)-75% of physicians use EMRs to enter or retrieve clinical patient notes, and 80% use electronic tools to access laboratory/diagnostic test results. The increased use of point-of-care tools and information repositories has resulted in the mass digitization and storage of clinical information, which provides opportunities for the use of big data analytics. Big data analytics may come to be understood as the process of examining clinical data in EMRs cross-referenced with other administrative, demographic and behavioural data sources to reveal determinants of patient health and patterns in clinical practice. Its increased use may provide opportunities to develop and enhance clinical practice tools and to improve health outcomes at both point-of-care and population levels. However, given the nature of EMR use in Canada, these opportunities may be restricted to primary care practice at this time. Physicians play a central role in finding the right balance between leveraging the advantages of big data analytics and protecting patient privacy. Guiding Principles for the Optimal Use of Data Analytics by Physicians at the Point of Care outlines basic considerations for the use of big data analytics services and highlights key considerations when responding to requests for access to EMR data, including the following: * Why will data analytics be used? Will the safety and effectiveness of patient care be enhanced? Will the results be used to inform public health measures? * What are the responsibilities of physicians to respect and protect patient and physician information, provide appropriate information during consent conversations, and review data sharing agreements and consult with EMR vendors to understand how data will be used? As physicians will encounter big data analytics in a number of ways, this document also outlines the characteristics one should be looking for when assessing the safety and effectiveness of big data analytics services: * protection of privacy * clear and detailed data sharing agreement * physician-owned and -led data collaboratives * endorsement by a professional or recognized association, medical society or health care organization * scope of services and functionality/appropriateness of data While this guidance is not a standalone document-it should be used as a supplemental reference to provincial privacy legislation-it is hoped that it can aid physicians to identify suitable big data analytics services and derive benefits from them. Introduction This document outlines basic considerations for the use of big data analytics services at the point of care or for research approved by a research ethics board. This includes considerations when responding to requests for access to data in electronic medical records (EMRs). These guiding principles build on the policies of the Canadian Medical Association (CMA) on Data Sharing Agreements: Principles for Electronic Medical Records/Electronic Health Records,1 Principles Concerning Physician Information2 and Principles for the Protection of Patients' Personal Health Information,3 the 2011 clinical vignettes Disclosing Personal Health Information to Third Parties4 and Need to Know and Circle of Care,5 and the Canadian Medical Protective Association's The Impact of Big Data on Healthcare and Medical Practice.6 These guiding principles are for information and reference only and should not be construed as legal or financial advice, nor is this document a substitute for legal or other professional advice. Physicians must always comply with all legislation that applies to big data analytics, including privacy legislation. Big data analytics in the clinical context involves the collection, use and potential disclosure of patient and physician information, both of which could be considered sensitive personal information under privacy legislation. Big data analytics has the potential to improve health outcomes, both at the point of care and at a population level. Doctors have a key role to play in finding the right balance between leveraging the advantages of big data (enhanced care, service delivery and resource management) and protecting patient privacy.7 Background A majority of physicians in Canada have adopted EMRs in their practice. The percentage of physicians using EMRs to enter or retrieve clinical patient notes increased from 26% in 2007 to 75% in 2014. Eighty percent of physicians used electronic tools to access laboratory/diagnostic test results in 2014, up from 38% in 2010.8 The increasingly broad collection of information by physicians at the point of care, combined with the growth of information repositories developed by various governmental and intergovernmental bodies, has resulted in the mass digitization and storage of clinical information. Big data is the term for data sets so large and complex that it is difficult to process them using traditional relational database management systems, desktop statistics and visualization software. What is considered "big" depends on the infrastructure and capabilities of the organization managing the data.9 Analytics is the discovery and communication of meaningful patterns in data. Analytics relies on the simultaneous application of statistics, computer programming and operations research. Analytics often favours data visualization to communicate insight, and insights from data are used to guide decision-making.10 For physicians, big data analytics may come to be understood as the process of examining the clinical data in EMRs cross-referenced with other administrative, demographic and behavioural data sources to reveal determinants of patient health and patterns in clinical practice. This information can be used to assist clinical decision-making or for research approved by a research ethics board. There are four types of big data analytics physicians may encounter in the provision of patient care. They are generally performed in the following sequence, in a continuous cycle11,12,13,14: 1. Population health analytics: Health trends are identified in the aggregate within a community, a region or a national population. The data can be derived from biomedical and/or administrative data. 2. Risk-based cost analysis: Populations are segmented into groups according to the level of risk to the patient's health and/or cost to the health system. 3. Care management: Clinicians are enabled to manage patient care according to defined care pathways and clinical protocols informed by population health analytics and risk-based cost analysis. Care management includes the following: o Clinical decision support: Outcomes are predicted and/or alternative treatments are recommended to clinicians and patients at the point of care. o Personalized/precision care: Personalized data sets, such as genomic DNA sequences for at-risk patients, are leveraged to highlight best practice treatments for patients and practitioners. These solutions may offer early detection and diagnosis before a patient develops disease symptoms. o Clinical operations: Workflow management is performed, such as wait-times management, mining historical and unstructured data for patterns to predict events that may affect care. o Continuing education and professional development: Longitudinal performance data are combined across institutions, classes, cohorts or programs with correlating patient outcomes to assess models of education and/or develop new programs. 4. Performance analytics: Metrics for quality and efficiency of patient care are cross-referenced with clinical decision-making and performance data to assess clinical performance. This cycle is also sometimes understood as a component of "meaningful" or "enhanced" use of EMRs. How might physicians encounter big data analytics? Many EMRs run analytics both visibly (e.g., as a function that can be activated at appropriate junctures in the care pathway) and invisibly (e.g., as tools that run seamlessly in the background of an EMR). Physicians may or may not be aware when data are being collected, analyzed, tailored or presented by big data analytics services. However, many jurisdictions are strengthening their laws and standards, and best practices are gradually emerging.15 Physicians may have entered into a data sharing agreement with their EMR vendor when they procured an EMR for their practice. Such agreements may include provisions to share de-identified (i.e., anonymized) and/or aggregate data with the EMR vendor for specified or unspecified purposes. Physicians may also receive requests from third parties to share their EMR data. These requests may come from various sources: * provincial governments * intergovernmental agencies * national and provincial associations, including medical associations * non-profit organizations * independent researchers * EMR vendors, service providers and other private corporations National Physician Survey results indicate that in 2014, 10% of physicians had shared data from their EMRs for the purposes of research, 10% for chronic disease surveillance and 8% for care improvement. Family physicians were more likely than other specialists to share with public health agencies (22% v. 11%) and electronic record vendors (13% v. 2%). Specialists were more likely than family physicians to share with researchers (59% v. 37%), hospital departments (47% v. 20%) and university departments (28% v. 15%). There is significant variability across the provinces with regard to what proportion of physicians are sharing information from their EMRs, which is affected by the presence of research initiatives, research objectives defined by the approval of a research ethics board, the adoption rates of EMRs among physicians in the province and the functionality of those EMRs.16 For example, there are family practitioners across Canada who provide data to the Canadian Primary Care Sentinel Surveillance Network (CPCSSN). The CPCSSN is a multi-disease EMR surveillance and research system that allows family physicians, epidemiologists and researchers to understand and manage chronic care conditions for patients. Health information is collected from EMRs in the offices of participating family physicians, specifically information about Canadians suffering from chronic and mental health conditions and three neurologic conditions, including Alzheimer's and related dementias.17 In another example, the Canadian Partnership Against Cancer's Surgical Synoptic Reporting Initiative captures standardized information about surgery at the point of care and transmits the surgical report to other health care personnel. Surgeons can use the captured information, which gives them the ability to assess adherence to the clinical evidence and safety procedures embedded in the reporting templates, to track their own practices and those of their community.18 The concept of synoptic reporting-whereby a physician provides anonymized data about their practice in return for an aggregate report summarizing the practice of others -can be expanded to any area in which an appropriate number of physicians are willing to participate. Guiding principles for the use of big data analytics These guiding principles are designed to give physicians a starting point as they consider the use of big data analytics in their practices: * The objective of using big data analytics must be to enhance the safety and/or effectiveness of patient care or for the purpose of health promotion. * Should a physician use big data analytics, it is the responsibility of the physician to do so in a way that adheres to their legislative, regulatory and/or professional obligations. * Physicians are responsible for the privacy of their individual patients. Physicians may wish to refer to the CMA's policy on Principles for the Protection of Patients' Personal Health Information.19 * Physicians are responsible for respecting and protecting the privacy of other physicians' information. Physicians may wish to refer to the CMA's policy on Principles Concerning Physician Information.20 * When physicians enter into and document a broad consent discussion with their patient, which can include the electronic management of health information, this agreement should convey information to cover the elements common to big data analytics services. * Physicians may also wish to consider the potential for big data analytics to inform public health measures and enhance health system efficiency and take this into account when responding to requests for access to data in an EMR. * Many EMR vendors provide cloud-based storage to their clients, so information entered into an EMR may be available to the EMR vendor in a de-identified and/or aggregate state. Physicians should carefully read their data sharing agreement with their EMR vendor to understand how and why the data that is entered into an EMR is used, and/or they should refer to the CMA's policy on the matter, Data Sharing Agreements: Principles for Electronic Medical Records/Electronic Health Records.21 * Given the dynamic nature of this emerging tool, physicians are encouraged to share information about their experiences with big data analytics and its applications with colleagues. Characteristics of safe and effective big data analytics services 1. Protection of privacy Privacy and security concerns present a challenge in linking big data in EMRs. As data are linked, it becomes increasingly difficult to de-identify individual patients.22 As care is increasingly provided in interconnected, digital environments, physicians are having to take on the role of data stewardship. To that end, physicians may wish to employ conservative risk assessment practices-"should we" as opposed to "can we" when linking data sources-and obtain express patient consent, employing a "permission-based" approach to the collection and stewardship of data. 2. A clear and detailed data sharing agreement Physicians entering into a contract with an EMR vendor or other third party for provision of services should understand how and when they are contributing to the collection of data for the purposes of big data analytics services. There are template data sharing agreements available, which include the basic components of safe and effective data sharing, such as the model provided by the Information and Privacy Commissioner of Ontario.23 Data sharing agreements may include general use and project-specific use, both of which physicians should assess before entering into the agreement. When EMR access is being provided to a ministry of health and/or regional health authority, the data sharing agreement should distinguish between access to administrative data and access to clinical data. Physicians may wish to refer to the CMA's policy on Data Sharing Agreements: Principles for Electronic Medical Records/Electronic Health Records.24 3. Physician-owned and -led data collaboratives In some provinces there may exist opportunities to share clinical data in physician-owned and -led networks to reflect on and improve patient care. One example is the Physicians Data Collaborative in British Columbia, a not-for-profit organization open to divisions of family practice.25 Collaboratives such as this one are governed by physicians and driven by a desire to protect the privacy and safety of patients while producing meaningful results for physicians in daily practice. Participation in physician-owned data collaboratives may ensure that patient data continue to be managed by physicians, which may lead to an appropriate prioritization of physicians' obligations to balance patient-centred care and patient privacy. 4. Endorsement by a professional or other recognized association or medical society or health care organization When considering use of big data analytics services, it is best to select services created or endorsed by a professional or other recognized association or medical society. Some health care organizations, such as hospitals, may also develop or endorse services for use in their clinical environments. Without such endorsement, physicians are advised to proceed with additional caution. 5. Scope of services and functionality/appropriateness of data Physicians may wish to seek out information from EMR vendors and service providers about how big data analytics services complement the process of diagnosis and about the range of data sources from which these services draw. While big data analytics promises insight into population health and practice trends, if it is not drawing from an appropriate level of cross-referenced sources it may present a skewed picture of both.26 Ultimately, the physician must decide if the sources are appropriately diverse. Physicians should expect EMR vendors and service providers to make clear how and why they draw the information they do in the provision of analytics services. Ideally, analytics services should integrate population health analytics, risk-based cost analysis, care management services (such as point-of-care decision support tools) and performance analytics. Physicians should expect EMR vendors to allocate sufficient health informatics resources to information management, technical infrastructure, data protection and response to breaches in privacy, and data extraction and analysis.27,28 Physicians may also wish to consider the appropriateness of data analytics services in the context of their practices. Not all data will be useful for some medical specialties, such as those treating conditions that are relatively rare in the overall population. The potential for new or enhanced clinical practice tools informed by big data analytics may be restricted to primary care practice at this time.29 Finally, predictive analytics often make treatment recommendations that are designed to improve the health outcomes in a population, and these recommendations may conflict with physicians' ethical obligations to act in the best interests of individual patients and respect patients' autonomous decision-making).30 References 1 Canadian Medical Association. Data sharing agreements: principles for electronic medical records/electronic health records [CMA policy]. Ottawa: The Association; 2009. Available: http://policybase.cma.ca/dbtw-wpd/Policypdf/PD09-01.pdf 2 Canadian Medical Association. Principles concerning physician information [CMA policy]. CMAJ 2002 167(4):393-4. Available: http://policybase.cma.ca/dbtw-wpd/PolicyPDF/PD02-09.pdf 3 Canadian Medical Association. Principles for the protection of patients' personal health information [CMA policy]. Ottawa: The Association; 2010. Available: http://policybase.cma.ca/dbtw-wpd/Policypdf/PD11-03.pdf 4 Canadian Medical Association. Disclosing personal health information to third parties. Ottawa: The Association; 2011. Available: www.cma.ca/Assets/assets-library/document/en/advocacy/CMA_Disclosure_third_parties-e.pdf 5 Canadian Medical Association. Need to know and circle of care. Ottawa: The Association; 2011. Available: www.cma.ca/Assets/assets-library/document/en/advocacy/CMA_Need_to_know_circle_care-e.pdf 6 Canadian Medical Protective Association. The impact of big data on healthcare and medical practice. Ottawa: The Association; no date. Available: https://oplfrpd5.cmpa-acpm.ca/documents/10179/301372750/com_14_big_data_design-e.pdf 7 Kayyali B, Knott D, Van Kuiken S. The 'big data' revolution in US health care: accelerating value and innovation. New York: McKinsey & Company; 2013. p. 1. 8 College of Family Physicians of Canada, Canadian Medical Association, Royal College of Physicians and Surgeons of Canada. National physician survey, 2014. National results by FP/GP or other specialist, sex, age and all physicians. Q7. Ottawa: The Colleges and Association; 2014. Available: http://nationalphysiciansurvey.ca/wp-content/uploads/2014/08/2014-National-EN-Q7.pdf 9 Anonymous. Data, data everywhere. The Economist 2010 Feb 27. Available: www.economist.com/node/15557443 10 Anonymous. Data, data everywhere. The Economist 2010 Feb 27. Available: www.economist.com/node/15557443 11 Canada Health Infoway. Big data analytics in health. Toronto: Canada Health Infoway; 2013. Available: www.infoway-inforoute.ca/index.php/resources/technical-documents/emerging-technology/doc_download/1419-big-data-analytics-in-health-white-paper-full-report (accessed 2014 May 16). 12 Ellaway RH, Pusic MV, Galbraith RM, Cameron T. 2014 Developing the role of big data and analytics in health professional education. Med Teach 2014;36(3):216-222. 13 Marino DJ. Using business intelligence to reduce the cost of care. Healthc Financ Manage 2014;68(3):42-44, 46. 14 Porter ME, Lee TH. The strategy that will fix health care. Harv Bus Rev 2013;91(10):50-70. 15 Baggaley C. Data protection in a world of big data: Canadian Medical Protective Association information session [presentation]. 2014 Aug 20. Available: https://oplfrpd5.cmpa-acpm.ca/documents/10179/301372750/com_2014_carmen_baggaley-e.pdf 16 College of Family Physicians of Canada, Canadian Medical Association, Royal College of Physicians and Surgeons of Canada. National physician survey, 2014. National results by FP/GP or other specialist, sex, age and all physicians. Q10. Ottawa: The Colleges and Association; 2014. Available: http://nationalphysiciansurvey.ca/wp-content/uploads/2014/08/2014-National-EN-Q10.pdf 17 Canadian Primary Care Sentinel Surveillance Network. Available: http://cpcssn.ca/ (accessed 2014 Nov 15). 18 Canadian Partnership Against Cancer. Sustaining action toward a shared vision: 2012-2017 strategic plan. Toronto: The Partnership; no date. Available: www.partnershipagainstcancer.ca/wp-content/uploads/sites/5/2015/03/Sustaining-Action-Toward-a-Shared-Vision_accessible.pdf 19 Canadian Medical Association. Principles for the protection of patients' personal health information [CMA policy]. Ottawa: The Association; 2011. Available: http://policybase.cma.ca/dbtw-wpd/Policypdf/PD11-03.pdf 20 Canadian Medical Association. Principles for the protection of patients' personal health information [CMA policy]. Ottawa: The Association; 2011. Available: http://policybase.cma.ca/dbtw-wpd/Policypdf/PD11-03.pdf 21 Canadian Medical Association. Data sharing agreements: principles for electronic medical records/electronic health records [CMA policy]. Ottawa: The Association; 2009. Available: http://policybase.cma.ca/dbtw-wpd/Policypdf/PD09-01.pdf 22 Weber G, Mandl KD, Kohane IS. Finding the missing link for big biomedical data . JAMA 2014;311(24):2479-2480. doi:10.1001/jama.2014.4228. 23 Information and Privacy Commissioner of Ontario. Model data sharing agreement. Toronto: The Commissioner; 1995. Available: www.ipc.on.ca/images/Resources/model-data-ag.pdf 24 Canadian Medical Association. Data sharing agreements: principles for electronic medical records/electronic health records [CMA policy]. Ottawa: The Association; 2009. Available: http://policybase.cma.ca/dbtw-wpd/Policypdf/PD09-01.pdf 25 Physicians Data Collaborative. Overview. Available: www.divisionsbc.ca/datacollaborative/home 26 Cohen IG, Amarasingham R, Shah A, Xie B, Lo B. The legal and ethical concerns that arise from using complex predictive analytics in health care. Health Aff 2014;33(7):1139-1147. 27 Rhoads J, Ferrara L. Transforming healthcare through better use of data. Electron Healthc 2012;11(1):e27. 28 Canadian Medical Protective Association. The impact of big data and healthcare and medical practice. Ottawa: The Association; no date. Available: https://oplfrpd5.cmpa-acpm.ca/documents/10179/301372750/com_14_big_data_design-e.pdf 29 Genta RM, Sonnenberg A. Big data in gastroenterology research. Nat Rev Gastroenterol Hepatol 2014;11(6):386-390. 30 Cohen IG, Amarasingham R, Shah A, Xie B, Lo B. The legal and ethical concerns that arise from using complex predictive analytics in health care. Health Aff 2014;33(7):1139-1147.
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Joint Canadian Medical Association & Canadian Psychiatric Association Policy - Access to mental health care

https://policybase.cma.ca/en/permalink/policy11890
Date
2016-05-20
Topics
Health care and patient safety
Population health/ health equity/ public health
  1 document  
Policy Type
Policy document
Date
2016-05-20
Topics
Health care and patient safety
Population health/ health equity/ public health
Text
One in five Canadians suffer from a mental health problem or illness in any given year. Mental illness costs Canada over $50 billion annually in health care costs, lost productivity and reductions in health-related quality of life. The social costs of poor mental health are high; a person with serious mental illness is at high risk of experiencing poverty, homelessness and unemployment. Despite the widespread prevalence of mental health disorders, it is estimated that fewer than one-third of people affected by them will seek treatment. This is due in large part to the stigma society attaches to mental illness, which can lead to discriminatory treatment in the workplace or the health care system. In recent years, awareness of mental health issues has risen considerably in Canada. However, much still needs to be done to ensure that Canadians who require mental health care have timely access to the treatment and support they need. The Canadian Medical Association (CMA) and Canadian Psychiatric Association (CPA) recommend that all stakeholders, and governments at all levels, work together toward developing a mental health care system that incorporates the following elements:
Comprehensive, patient-centred care and evidence-based treatment for mental health disorders. This includes enhancing collaboration and teamwork among health professionals, patients and their families; providing education and resources for health professionals; and supporting ongoing research to identify and disseminate best clinical practices.
Timely access to mental health services. The health care system should ensure an appropriate supply, distribution and mix of accredited mental health professionals, ensure equitable coverage of essential mental health care and treatment, and provide appropriate services for populations with unique needs, such as children and older Canadians.
Adequate supports in the community, for example in schools and workplaces, to promote mental health, identify mental health issues in a timely manner and support people with mental illness as they seek to function optimally.
Reduction of stigma and discrimination faced by Canadians with mental health disorders, in the health care system and in society. Summary of recommendations Comprehensive, patient-centred care and evidence-based treatment Governments and health care systems 1. Develop and support a continuum of evidence-based, patient-centred services for the promotion of mental health and treatment of mental illness, in the community and in hospitals, with smooth transitions and linkages between each level. 2. Develop and implement models of collaborative mental health care in the community, with input from key stakeholders including the public, patients and their families, evaluate their effectiveness and encourage the adoption of those that demonstrate success. 3. Develop and implement a national caregiver strategy and expand the financial and emotional support programs currently offered to informal caregivers. 4. Continue to develop, implement and monitor mental health indicators that reflect both health system performance and population health, regularly report the results to the public and use them to improve the delivery of mental health services in Canada. 5. Increase funding for mental health research so that it is proportionate to the burden of mental illness on Canada’s health care system. Medical faculties, professional associations and the health care systems 6. Continue to develop evidence-based guidelines and professional development programs on mental health treatment and management, for all health care providers. 7. Continue to conduct research into best practices in mental health care and treatment and communicate the results of this research promptly to health care providers and the public. Appropriate provision and funding of mental health services Governments and health care systems Address current gaps in access to mental health services in the following ways: 8. Ensure that mental health services are appropriately funded to effectively meet the needs of Canadians. 9. Make mental health a priority with all levels of government and ensure stable and appropriate funding. 10. Establish standards for access to mental health services, including appropriate maximum wait times, and measure and report them on an ongoing basis. 11. Fund and support primary health care delivery models that include mental health promotion and mental illness treatment among the services they provide and identify and address the barriers to their implementation. 12. Increase funding for access to evidence-based psychotherapies and counselling services for mental disorders. 13. Establish a program of comprehensive prescription drug coverage to ensure that all Canadians have access to medically necessary drug therapies. 14. Continue to develop linkages between remote communities and larger health centres, including telehealth and e-health services, to ensure adequate access to mental health services by people in smaller communities. Health professional associations 15. Work with governments and other stakeholders to develop a mental health human resources plan that optimizes the scope of practice of every health professional, is culturally appropriate and takes into account Canada’s diverse geography. 16. Undertake a national study of ways to optimize the supply, mix and distribution of psychiatrists in Canada and present its findings/recommendations to governments. Adequate community supports outside the health sector Governments 17. Ensure the availability of school-based mental health promotion and mental illness prevention programs, and programs that address school-related problems, such as bullying, that are associated with mental distress. 18. Work with employers and other stakeholders to support mental health programs for workplaces. 19. Provide programs and services to improve the interface between people with mental illnesses and the criminal justice system. 20. Expand programs that provide housing for people with mental illness. Reduction of stigma and discrimination Governments and the health care system 21. Incorporate identification and elimination of stigma as a quality of care indicator in the ongoing monitoring of health system performance at all levels. 22. Implement and evaluate national public awareness and education strategies to counteract the stigma associated with mental illness. 23. Enforce legislation and regulations to guard against discrimination against people with mental illness. Professional education 24. Incorporate effective anti-stigma education into the entire medical education continuum (medical school, residency and continuing professional development) for all physicians and other health professionals. 25. Incorporate effective anti-stigma education into professional development programs at hospitals and other health care facilities. Introduction Mental health disorders impose a heavy burden on Canadians and their health care system. In any given year, one in five Canadians will suffer from a mental health problem or illness. It is estimated that 10% to 20% of Canadian youth are affected by a mental health disorder. By age 40, 50% of Canadians will have had a mental illness. Mental illness can shorten life expectancy; for example, people with schizophrenia die as much as 20 years earlier than the population average. This is due both to higher rates of suicide and substance abuse and to a poorer prognosis for conditions such as heart disease, diabetes and cancer. Suicide is the second leading cause of death (after injuries) for Canadians aged 15 to 34. For people with mental health disorders, the effect on their lives goes beyond their interaction with the health care system; a person with serious mental illness is at high risk of experiencing poverty, homelessness and unemployment. Mental health disorders are costly to Canada’s health care system and to its economy. A third of hospital stays in Canada and 25% of emergency department visits are due to mental health disorders. It is estimated that mental illness costs Canada over $50 billion per year, including health care costs, lost productivity and reductions in health-related quality of life. Despite the widespread prevalence of mental health disorders, it is estimated that only one- quarter to one-third of people affected by them will seek treatment. This could be due in part to the stigma society attaches to mental illness, which deters many people from seeking needed treatment because they fear ostracism by their friends or discriminatory treatment in the workplace or the health care system. Those who do seek treatment may have a difficult time finding it. According to Statistics Canada, in 2012 almost a third of Canadians who sought mental health care reported that their needs were not met or only partially met. Lack of access to family physicians, psychiatrists and other health care providers contributes to this deficit. Though mental illnesses constitute more than 15% of the disease burden in Canada, the country spends only about seven cents of every public health care dollar on mental illness (7%), below the 10% to 11% of spending devoted to mental illness in countries such as New Zealand and the United Kingdom.4 Since 2000, however, Canadians’ awareness of mental health issues has risen considerably. The seminal 2006 report entitled Out of the Shadows at Last by the Standing Senate Committee on Social Affairs, Science and Technology, chaired by Senator Michael Kirby, made a number of recommendations aimed at increasing awareness, improving access to mental health services and reducing the stigma of mental illness. As a result of this report, in 2007 the federal government established the Mental Health Commission of Canada (MHCC) to be a catalyst for improving the mental health system and changing the attitudes and behaviours of Canadians around mental health issues. In 2012, the MHCC released Canada’s first mental health strategy, “Changing Directions, Changing Lives.” As part of her mandate from the prime minister following the 2015 federal election, Canada’s health minister has been asked to “engage provinces and territories in the development of a new multi-year Health Accord [that will] make high quality mental health services more available to Canadians who need them.” Nearly all provincial governments have also developed mental health strategies for their own jurisdictions. Much still needs to be done to translate heightened awareness into improvements in service provision to give Canadians who require mental health care timely access to the evidence-based, patient-centred treatment and support they need. The Canadian Medical Association (CMA) and Canadian Psychiatric Association (CPA) agree it is time to make mental health a high priority in Canada. The CMA and CPA recommend that all stakeholders, and governments at all levels, work together toward developing a mental health care system that is driven by needs-based plans with clear performance measures and that receives an appropriate share of health care funding. This position statement discusses and makes recommendations on issues relating to access to mental health care, with a focus on:
comprehensive, patient-centred care and evidence-based treatment for mental health disorders;
appropriately funded primary, specialty and community mental health treatment and support services;
adequate community supports for people with mental health disorders; and
reduction of the stigma and discrimination faced by Canadians with mental health disorders. Comprehensive, patient-centred care and evidence-based treatment The goal of mental health care in Canada should be to allow patients’ needs to be met in the most appropriate, timely and cost-effective manner possible. Current best practice suggests that care for patients with mental health disorders should be provided using models that incorporate the following principles. Patient-centred care One of the fundamental principles of health care is that it be patient centred. CMA defines patient-centred care as “seamless access to the continuum of care in a timely manner … that takes into consideration the individual needs and preferences of the patient and his/her family and treats the patient with respect and dignity.” For treatment of mental health disorders, it is essential that patients be core members of the health care team, working with health care providers to address their individual needs, preferences and aspirations and to seek their personal paths to well-being. Physicians and other health professionals can help patients make choices about their treatment and can provide information and support to patients and their families as they seek to cope with the effects of their illnesses and live functional lives. A continuum of mental health services Mental health disorders can be complex and can vary in severity. A patient may have short-term coping difficulties that can be resolved with counselling or a severe psychotic illness that requires frequent hospital care and intensive, lifelong support. This range of needs requires that the health care system provide different levels of care, including:
community-based programs to promote and maintain mental health and to facilitate early identification of problems requiring intervention;
community-based primary health care, including collaborative care teams, which focus on providing mental health maintenance programs and on treating high-prevalence conditions such as anxiety disorders, mood disorders and addictions;
specialized services in the community for patients with greater needs, which can be delivered through a variety of means, including community-based psychiatrists, interdisciplinary family health teams that incorporate psychiatric services and specialized interdisciplinary teams such as assertive community treatment (ACT) teams ;
acute-care mental health services including community crisis teams and beds, psychiatric emergency services and inpatient beds in community hospitals, and specialized psychiatric hospitals;
a continuum of residential care services including long-term care facilities;
seamless, integrated transitions from one level of care to another, and across age groups (e.g., from youth to adult to senior mental health services);
appropriate services for special populations, including children and adolescents, and adults with dementia;
specialized psychiatric services for patients with complex mental illnesses such as eating disorders, post-traumatic stress disorder and personality disorders; and
community-based programs that provide housing, vocational support and other services to optimize community integration of people with mental illness. Mental health care should ideally be provided in the context of caring for the patient’s overall health, taking into account any physical conditions for which the patient is receiving or may receive treatment. Collaborative and team-based mental health care Within this continuum, a variety of health care professionals with different skills and education provide mental health services in Canada. They include:
primary care physicians (family physicians and general practitioners);
psychiatrists (hospital and community based);
other specialist physicians (including emergency physicians, paediatricians, geriatricians);
other health professionals (psychologists, nurses, pharmacists, occupational therapists, social workers); and
case managers, peer support workers and system navigators. Collaborative models enable a variety of mental health care providers to work with patients and their families to provide effective, coordinated care according to a mutually agreed plan. Collaborative partnerships in mental health care have demonstrated benefits including symptom and functional improvement, reduced disability days and improved adherence to medication. Elements of a successful collaborative partnership include:
effective linkages among psychiatrists, primary care providers and other mental health professionals, including a seamless process for consultation and referral;
effective communication and information flow;
use of technology, such as electronic health records and telemedicine, to facilitate collaboration among providers in all health care settings;
coordination of care plans and clinical activities to ensure the most effective care and efficient use of resources; and
integration of mental health and primary care providers within a single service or team (in some cases, providers may work in the same practice setting).13 Education and resources for health professionals Since mental health disorders are pervasive and are often associated with other chronic conditions such as heart disease, health care providers of all disciplines and specialties often encounter them while caring for their patients. The Mental Health Core Competencies for Physicians report, prepared collaboratively by the Royal College of Physicians and Surgeons of Canada, the MHCC, the College of Family Physicians of Canada, CMA and CPA, proposes goals, principles and core mental health competencies to provide guidance to physicians of all specialties. The intent is to improve access to mental health services; improve the experience of care, including reducing stigma; recognize and address the interaction between physical and mental health; and provide practice support for physicians. To support physicians and other health care providers in treating mental health disorders, clinical and practice resources should be available to them, including:
early education in medical school and residency on mental health promotion, diagnosis and treatment of mental health conditions, and liaison with other community resources, for all specialties;
clinical practice tools including practice guidelines, clinical pathways and online decision support including prescribing guidelines for the appropriate use of psychiatric drugs;
online continuing professional development (CPD) programs ;
enhanced interprofessional education for all providers (psychiatrists, family physicians, nurses, social workers, occupational therapists, peer support workers, patients, their family members and others as relevant) ; and
evidence-based, user-friendly education and support tools for patients, which physicians can recommend to help them manage their conditions. Support for informal caregivers Often the burden of caring for a person with mental illness falls heavily on family or friends, and the role of the informal caregiver can be demanding financially, physically and/or emotionally. Though governments have instituted tax credits and other forms of support for caregivers, more help is required. A national caregiver strategy, developed by governments and other key stakeholders, could define a national standard of support for informal caregivers and expand the financial and emotional support programs that are currently offered. Research and evaluation Thanks to ongoing research, our knowledge of how to treat and manage mental health disorders is constantly growing and developing. However, there are still gaps in this knowledge, and research needs in the area remain substantial. CMA and CPA encourage a continued commitment to research into best practices in early identification, care and treatment of mental health disorders and to funding this research so that it is proportionate to the burden of mental illness on Canada’s health care system. Results of this research should be communicated to health professionals and the public as quickly and widely as possible, so that it can be rapidly incorporated into clinical practice. Mental health care interventions should also be routinely evaluated for their effectiveness in improving patient care, enhancing the sustainability of the health care system and increasing the overall health and well-being of Canadians. The MHCC has developed a set of 63 mental health indicators that focus on 13 specific areas, including access and treatment, the economy and workplace, and special populations such as seniors, children and youth. Other projects are underway to develop indicators to monitor and report more specifically on mental health system performance, such as use of emergency departments for mental health care, and physician follow-up after hospital treatment. Such indicators should be used on an ongoing basis to monitor the performance of the mental health care system and provide mental health professionals, planners and governments with reliable information that they can use to better meet the needs of Canadians. Recommendations Governments and health care systems 1. Develop and support a continuum of evidence-based, patient-centred services for the promotion of mental health and treatment of mental illness, in the community and in hospitals, with smooth transitions and linkages between each level. 2. Develop and implement models of collaborative mental health care in the community, with input from key stakeholders including the public, patients and their families, evaluate their effectiveness and encourage the adoption of those that demonstrate success. 3. Develop and implement a national caregiver strategy and expand the financial and emotional support programs currently offered to informal caregivers. 4. Continue to develop, implement and monitor mental health indicators that reflect both health system performance and population health, regularly report the results to the public and use them to improve the delivery of mental health services in Canada. 5. Increase funding for mental health research so that it is proportionate to the burden of mental illness on Canada’s health care system. Medical faculties, professional associations and health care systems 6. Continue to develop evidence-based guidelines and professional development programs on mental health treatment and management, for all health care providers. 7. Continue to conduct research into best practices in mental health care and treatment and communicate the results of this research promptly to health care providers and the public. Appropriate provision and funding of mental health services Appropriate provision of mental health services requires that people be able to access the right care in the right place at the right time, in both hospital and community settings. Unfortunately, because of the underfunding of the mental health care system, limited resources are available to accommodate all of those who need such services. The exact extent of lack of access to hospital and community mental health services is not well documented; for instance, provinces do not report wait times for psychiatric services. According to the 2015 Wait Time Alliance Report Card, no jurisdiction is measuring what proportion of patients is being seen within the benchmark time periods. In December 2015 the CPA expressed disappointment that “no visible progress has been made in measuring how well the health system meets the psychiatric needs of Canadians.” In the absence of community-based services, patients may have their discharge from hospital delayed. Once they are back in the community, they may be unable to find appropriate assistance, or assistance may be available but beyond their financial means. They may abandon treatment or rely on emergency departments for episodic crisis care.4 Canada should work to remedy the current deficiencies in access to mental health services so that people with mental health disorders have timely access to seamless, comprehensive care in the most appropriate setting. This includes ensuring an appropriate supply, distribution and mix of accredited mental health professionals, ensuring equitable coverage of essential health services and making appropriate services and supports available to populations with unique needs. Access to physician services Primary care For the majority of patients who seek treatment for a mental health problem, the first (often the only) point of contact is their primary care physician. As part of the comprehensive care they provide to patients, family physicians and general practitioners can provide mental health promotion and wellness counselling, detect and treat mental health disorders in their early stages and monitor the patient’s progress in the context of his or her overall health and well-being, referring to psychiatrists and other mental health professionals as needed.13 CMA has long recommended that every Canadian have an established professional relationship with a family physician who is familiar with his or her condition, needs and preferences. However, some Canadians may have difficulty finding primary medical care, since the proportion of family physicians and general practitioners to the population is not consistent across Canada. All stakeholders should continue working to ensure that every Canadian has access to comprehensive first-point-of-contact medical care. Psychiatric services Psychiatrists are physicians who complete five to seven years of specialty and subspecialty training to diagnose, treat and provide ongoing care for mental illnesses, particularly to people with complex illnesses that cannot be managed within a primary care setting alone. In addition to providing specialty treatment, psychiatrists are also active in the areas of education, research and advocacy about the importance of mental health promotion and mental illness prevention. They provide care across the lifespan, in both hospital and community settings. Patient access to psychiatrists is often limited by long wait times. It has been suggested that this is due to a shortage of psychiatrists, which is more severe in some parts of Canada than others. Recent surveys report that a number of specialists, including psychiatrists, are in the latter half of their careers, and there are concerns that the number of psychiatrists per Canadian population is declining. Though the Royal College notes that the number of psychiatric residency positions has increased in recent years, it is unclear if this is sufficient to meet current and future population needs. The CPA recommends the development of strategies to attract, train and retain practitioners in clinical psychiatry. Access to services not funded by provincial and territorial health systems Though Canada’s public health care system covers many mental health services and treatments, including physician consultations and hospital care, it does not cover all aspects of optimal treatment and care, and access to some therapies may be limited by the patient’s ability to pay. Psychiatric drugs, especially those that must be taken over many years, can pose a heavy financial burden for patients who do not have drug coverage through employer-provided benefit programs or provincial or territorial drug plans. Psychotherapies delivered by non-physician health care practitioners are generally not covered by government health plans and must, therefore, in most cases be paid for out of pocket or through private insurance plans, to which many Canadians do not have access. Federal, provincial and territorial governments should work to increase access to accredited psychological and counselling services that are evidence based and to provide comprehensive coverage of medically necessary prescription drugs for all Canadians. Some primary health care practices, such as family health teams in Ontario, have funding envelopes that they can use to contract with skilled mental health professionals to provide psychotherapy, stress management programs and other services that are not ordinarily funded through provincial health budgets. Models such as these help to make publicly funded mental health care available to patients who might otherwise have been unable to afford it. Access to mental health services for special populations For some populations, access to mental health services may be particularly problematic. For example, stakeholders should consider the needs of the following populations:
Children and youth: As up to 70% of mental health conditions first appear in adolescence or young adulthood, it is important that young people have access to mental health promotion and to appropriate assessment and treatment of mental health disorders. At present only one out of four children who need mental health services receives them.1,3 CMA and CPA particularly recommend increased supports for children in high-risk situations, such as those in foster care. The transition from the youth to the adult mental health service sectors should be smooth and well organized.
Remote areas: People in the North and other remote parts of Canada may have to travel many miles to access mental health and other health care services. This gap should be remedied by using technologies such as telehealth and e-mental health services and by strengthening communication and coordination between small communities and the larger health centres to which their residents travel for care.
Immigrants and refugees: New arrivals to Canada may have problems understanding our language and culture and may also face mental health problems as a result of traumatic experiences in their countries of origin or the stress of relocation.
Indigenous Peoples. Rates of mental health disorders, addictions and suicide are high among Canada’s First Nations, Inuit and Métis. Much of this is linked to past experience of forcible separation from their traditional languages and culture. Health service providers should work with Indigenous communities to address their distinct mental health needs appropriately.
Seniors: An estimated 10% to 15% of seniors report depression, and the rate is higher among those with concomitant physical illness and those living in long-term care facilities. Depression among older people may be under-recognized and under-treated or dismissed as a normal consequence of aging. Poor mental health is often associated with social isolation, a common problem among seniors. The majority of older adults in long-term care settings have dementia or another mental health condition. Recommendations Governments and health care systems Address current gaps in access to mental health services in the following ways: 8. Ensure that mental health services are appropriately funded to effectively meet the needs of Canadians. 9. Make mental health a priority with all levels of government and ensure stable and appropriate funding. 10. Establish standards for access to mental health services, including appropriate maximum wait times, and measure and report them on an ongoing basis. 11. Fund and support primary health care delivery models that include mental health promotion and mental illness treatment among the services they provide and identify and address the barriers to their implementation. 12. Increase funding for access to evidence-based psychotherapies and counselling services for mental disorders. 13. Establish a program of comprehensive prescription drug coverage to ensure that all Canadians have access to medically necessary drug therapies. 14. Continue to develop linkages between remote communities and larger health centres, including telehealth and e-health services, to ensure adequate access to mental health services by people in smaller communities. Health professional associations 15. Work with governments and other stakeholders to develop a mental health human resources plan that optimizes the scope of practice of every health professional, is culturally appropriate and takes into account Canada’s diverse geography. 16. Undertake a national study of ways to optimize the supply, mix and distribution of psychiatrists in Canada and present its findings/recommendations to governments. Adequate community supports outside the health sector People with mental health disorders often require not only treatment and care from the health sector but also support from the community at large to function optimally. Ideally, the community should provide an environment that supports patients as they work toward recovery and well-being. In addition, schools, workplaces and other community agencies can play an important role in promoting mental health and identifying problems that require attention. Schools Education and information should be made available to parents, teachers and health professionals to help them identify signs of mental illness or distress in children and adolescents, so they can intervene early and appropriately. School health education programs should include the promotion of mental health and incorporate self-management techniques such as mindfulness training to help young people develop resilience. Schools should also ensure that they minimize possible threats to children’s mental health, such as bullying, that may occur on their premises. Workplaces Unlike many other chronic conditions, mental illness frequently affects younger people and those in their most productive years, so the burden it imposes on Canada’s economy is high. Mental health disorders account for 30% of short-term workplace disability claims,1 and the Conference Board of Canada has estimated that six common mental health disorders cost the country’s economy more than $21 billion a year and predicts that this cost will increase to $30 billion by 2030. However, often employees do not disclose mental health problems to their employers for fear of losing their jobs, being ostracized by colleagues, or other negative consequences. Workplaces can support the mental health of their employees by:
offering mental health promotion assistance through stress management seminars, employee assistance and other programs;
training managers to identify potential mental health issues in their staff and to intervene early and appropriately;
eliminating stigma and discrimination and providing an environment in which employees feel safe disclosing their mental health issues; and
offering adequate benefits, including supplementary health insurance and supportive leave-of-absence programs. The MHCC’s Standard for Psychological Health and Safety in the Workplace, released in 2013, provides guidance to employers on how to promote the mental health of their staff and intervene in cases of mental distress. Correctional services People with mental illnesses are overrepresented in the criminal justice system. Estimates suggest that rates of serious mental illness among federal offenders upon admission have increased by 60% to 70% cent since 1997.4 This places a heavy burden on corrections and law enforcement staff, who are often inadequately trained to deal with mental illness. Programs and services are needed to ensure that people with mental health disorders who run afoul of the law are identified early, given appropriate treatment throughout their incarceration and followed up on release. These could include:
training for police and other frontline criminal justice and corrections workers in how to interact with people with mental illnesses;
diversion programs, such as mental health courts, to redirect people with mental illnesses who are about to enter the criminal justice system;
comprehensive psychiatric screening, assessment and treatment for incarcerated patients with mental illnesses and common co-occurring conditions such as addiction; and
Careful handover of clinical care at the point of release from custody with engagement by mental health services in the community. Housing Mental illness increases a patient’s risk for poverty and homelessness. It is estimated that two- thirds of Canada’s homeless population have a serious mental illness. Homelessness and poverty can exacerbate existing mental health and addiction problems, hinder access to treatment and reduce life expectancy. Programs such as the MHCC’s Housing First research demonstration project can improve the social and economic circumstances of people with mental illness. The MHCC project provided no-strings-attached supportive housing for people with chronic mental health problems, giving them a secure base from which they could pursue their treatment and recovery goals. Evaluation showed that this approach reduced the rate of homelessness, improved access to treatment and support services and led to cost savings, particularly for the program participants who had the highest service-use costs. Recommendations Governments 17. Ensure the availability of school-based mental health promotion and mental illness prevention programs, and programs that address school-related problems, such as bullying, that are associated with mental distress. 18. Work with employers and other stakeholders to support mental health programs for workplaces. 19. Provide programs and services to improve the interface between people with mental illnesses and the criminal justice system. 20. Expand programs that provide housing for people with mental illness. Reduction of stigma and discrimination Many believe that the primary reason for the underfunding of the mental health care system and for the reluctance of people with mental health disorders to seek treatment is the stigma attached to their conditions. Mental illness is the most stigmatized disease state in Canada, and discriminatory behaviour toward people with mental health disorders is widespread. This can include ostracism and lack of support from peers, discrimination in the workplace and distorted public perceptions, such as the tendency to equate mental illness with violent behaviour. Discriminatory behaviour can also occur in the health care system. Experts acknowledge that stigma affects health care providers’ attitude toward patients with mental health problems.29 Though many health care providers are unaware that their language or actions can be harmful, their attitude may have negative effects on the treatment their patients receive. For example, if a patient who has been treated for a psychiatric condition reports physical symptoms, these symptoms might be attributed to the mental illness rather than to a physical condition, and as a result the patient may not receive necessary treatment. This is known as diagnostic overshadowing. , CMA and CPA recommend comprehensive efforts to change the culture of stigmatization of mental illness, in the health care system and in society. A number of interventions are underway to help reduce stigma and discrimination related to mental illness. These include public awareness programs such as the Bell Let’s Talk campaign, Mental Illness Awareness Week, sponsored by the Canadian Alliance on Mental Illness and Mental Health, and the Opening Minds program of the MHCC, which focuses on specific populations including youth and health care providers. The current consensus among experts is that the most effective interventions are those that:
are aimed at changing behaviour rather than modifying attitudes;
are ongoing rather than time limited;
are targeted to specific groups rather than to the general population; and
involve direct contact with people with mental illness. Within the health care system, professional education is a potentially important means of addressing stigma and discrimination. It has been recommended that anti-stigma education be incorporated into the medical education continuum at all levels (including residency and CPD) and for all specialties and that this education incorporate direct contact with people with mental illness, to share their stories of recovery.27 All health professionals and their associations should be encouraged to address the elimination of stigma in their educational programs. CMA and CPA have worked with partners to provide education to physicians, through workshops, online materials and other means. Recommendations Governments and the health care system 21. Incorporate identification and elimination of stigma as a quality of care indicator in the ongoing monitoring of health system performance at all levels. 22. Implement and evaluate national public awareness and education strategies to counteract the stigma associated with mental illness. 23. Enforce legislation and regulations to guard against discrimination against people with mental illness. Professional education 24. Incorporate effective anti-stigma education into the entire medical education continuum (medical school, residency and CPD) for all physicians and other health professionals. 25. Incorporate effective anti-stigma education into professional development programs at hospitals and other health care facilities. Conclusion Despite increased public awareness about mental illness, ensuring access to effective mental health services and supports remains a challenge in Canada, and the stigma and discrimination associated with mental illness remain high. CMA and CPA believe that change is possible. In an ideal future, all Canadians would feel safe acknowledging their mental health problems and seeking help for them, a range of effective, evidence-based treatments would be available for every Canadian who needs them, and communities would support Canadians as they work to promote and maintain their mental health or to recover from mental illness. It is our hope that health care providers, governments, communities, patients and their families will work together toward realizing this future. References Mental Health Commission of Canada. The Facts. Calgary (AB): The Commission; 2012. Available: http://strategy.mentalhealthcommission.ca/the-facts/ (accessed 2015 May 05). Mental Health Commission of Canada. Making the case for investing in mental health in Canada. Calgary (AB): The Commission; 2013. Chesney E, Goodwin GM, Fazel S. Risks of all-cause and suicide mortality in mental disorders: a meta-review. World Psychiatry 2014; 13 (2):53–60. Mental Health Commission of Canada. 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Ottawa (ON): The Board; 2012 Jul. Mental Health Commission of Canada, Canadian Standards Association. CAN/CSA-Z1003-13/BNQ 9700-803/2013 - Psychological health and safety in the workplace — prevention, promotion, and guidance to staged implementation. Toronto (ON): CSA Group; 2013. Available: http://shop.csa.ca/en/canada/occupational-health-and-safety-management/cancsa-z1003-13bnq-9700-8032013/invt/z10032013 (accessed 2014 Oct 10). Mental Health Commission of Canada. Turning the key: Assessing housing and related supports for persons living with mental health problems and illnesses. Ottawa (ON): The Commission; 2012. Available: www.mentalhealthcommission.ca/English/media/3055 (accessed 2014 Oct 10). Mental Health Commission of Canada. National final report: Cross-Site At Home/Chez Soi Project. Ottawa (ON): The Commission; 2014. Available: www.mentalhealthcommission.ca/English/document/24376/national-homechez-soi-final-report (accessed 2015 May 15). Hawthorne D; Major S; Jaworski M; et al. Combatting stigma for physicians and other health professionals. Ottawa (ON): MDcme.ca; 2011. Available https://www.mdcme.ca/courseinfo.asp?id=143 (accessed 2015 May 15). Abbey SE, Charbonneau M, Tranulis C, et al. Stigma and discrimination. Can J Psychiatry 2011; 56(10): 1-9. Available: http://publications.cpa-apc.org/media.php?mid=1221 (accessed 2015 Aug 4). Pietrus M. Opening Minds interim report. Calgary (AB): Mental Health Commission of Canada; 2013. Available: www.mentalhealthcommission.ca/English/document/17491/opening-minds-interim-report (accessed 2015 Aug 4). Mental Health Commission of Canada. Together against stigma: changing how we see mental illness: a report on the 5th International Stigma Conference, Ottawa (ON), 2012 Jun 4–6. Ottawa (ON): The Commission; 2013. Available: www.mentalhealthcommission.ca/English/media/3347 (accessed 2014 Oct 14).
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