Diabetes Charter for Canada Companion Document

Transcription

1 Diabetes Background Charter Document: for Canada: Diabetes Companion Charter Document for Canada April 2014

2 Diabetes Charter for Canada Companion Document Table of contents Definitions i The Diabetes Charter for Canada 1 Why Canada Needs a Diabetes Charter 2 Why Measuring Change is Important 3 Rights and Responsibilities of Canadians Living with Diabetes 4 How To Measure Progress 10 Responsibilities of Governments 11 How To Measure Progress 14 Rights and Responsibilities of Health Care Providers 15 How To Measure Progress 16 Responsibilities of the Canadian Diabetes Association 17 Where to Get More Information 18 About the Canadian Diabetes Association 19 2 Diabetes Charter for Canada: Companion Document

3 DEFINITIONS Caregiver: Someone responsible for the care of a person living with an illness who is not that person s health care provider. Parents, children, friends, volunteers and spouses can act as caregivers to people living with diabetes. Care Plan: Actions agreed on as a result of discussions between a patient and their health care providers. Certified Diabetes Educator: A health care provider with knowledge of diabetes care and management, educational processes and communication skills, who has passed the certification exam. Charter: A document that defines the rights, privileges and responsibilities of a population. Chiropodist: A health care provider who specializes in the health of the feet. Dentist: a duly qualified person licensed to practice dentistry and dental services in a province or territory of Canada. Diabetes: A chronic non-communicable disease where the body either cannot produce insulin or cannot properly use the insulin it produces. Diabetes can lead to high levels of glucose in the blood and can damage organs, blood vessels and nerves. Type 1 diabetes develops when the insulin-producing cells (beta cells) in the pancreas have been destroyed, and the body is unable to produce any insulin. Type 1 affects approximately 10 per cent of Canadians with diabetes. Type 2 diabetes develops when the body does not produce enough insulin, or when the body does not effectively use the insulin that is produced. Type 2 diabetes affects approximately 90 per cent of Canadians living with diabetes and usually develops in adulthood, although increasing numbers of children in highrisk populations are being diagnosed. Gestational diabetes is first diagnosed or develops during pregnancy. It affects 2 to 4 per cent of all pregnancies (in the non-aboriginal population) and is rising in prevalence. Blood glucose usually returns to normal following delivery, but both mother and child are at higher risk of developing type 2 diabetes later in life. Prediabetes is diagnosed when a person s blood glucose levels are high but not high enough for a diagnosis of diabetes. People with prediabetes are at higher risk of developing type 2 diabetes than those people without the condition. Diabetes Community: A community consisting of people who are living with, affected by, or interested in diabetes. This could include people living with diabetes, caregivers, family, researchers, health care providers, friends and colleagues. Diabetes Education Program: A program provided by a team of dietitians, nurses and other service providers that helps teach people with diabetes about the disease and how to manage it. These programs can be found in hospitals, community health centres and other types of health care settings. i

4 Endocrinologist: A doctor who specializes in diabetes and other health issues related to hormones (endocrinology). Glucose: Sugar in the blood. When food or drink is consumed, the body converts that food into glucose and absorbs it into the blood to use for energy. Health Care Provider: Any professional who has been trained to provide care or education impacting health. Doctors, nurses, dentists, certified diabetes educators, mental health workers, dietitians, pharmacists, chiropodists/podiatrists and occupational therapists are examples of health care providers. Health Care System: The organization of people, institutions and resources that promote, restore and maintain the health of a population. Hyperglycemia: High blood glucose. Hypoglycemia: Low blood glucose. Indicator: Statistics used to measure an occurrence or trend of interest. Insulin: A hormone produced by beta cells that allows muscle, liver and some other tissues to absorb glucose from the blood. Ophthalmologist: A medical doctor who specializes in the health of the eyes. Optometrist: A health care provider who specializes in the health of the eyes. Self-Management: People or family/friends managing and monitoring an illness daily without the direct supervision of a health care provider. For diabetes, this includes taking medicines, measuring blood glucose, balancing diet, exercising, etc. Podiatrist: A health care provider who specializes in the health of the feet. Responsibility: An obligation for which there is accountability. It should be noted that the term responsibility within the Diabetes Charter for Canada (the Charter) is not a legal concept. Accordingly, while the responsibilities outlined within the Charter are viewed as duties that should be fulfilled, stakeholders cannot be forced under the Charter to do so. Right: An expectation for which there is accountability. It should be noted that the term right within the Charter is not a legal concept. Accordingly, while rights outlined within the Charter are viewed as expectations that should be fulfilled, stakeholders who are accountable cannot be forced under the Charter to do so. ii Diabetes Charter for Canada: Companion Document

5 THE DIABETES CHARTER FOR CANADA The vision of the Canadian Diabetes Association for the Diabetes Charter for Canada is a country where people with diabetes live to their full potential. The guiding principles of the Canadian Diabetes Association in developing this Charter are to: ensure that people who live with diabetes are treated with dignity and respect. advocate for equitable access to high quality diabetes care and supports. enhance the health and quality of life for people who live with diabetes and their caregivers. The Association has developed the Charter through extensive research and consultations over more than a year. The Charter was informed by: a literature review of health and patient charters developed in Canada and internationally; a panel of subject matter experts including Canadians with diabetes and health professionals to identify key issues affecting people with diabetes; four consultative workshops attended by over 80 Canadians within the diabetes community; and a survey verifying the rights and responsibilities proposed in the workshops. An advisory committee of health care professionals and diabetes advocates was consulted regularly throughout the project process. Overall, more than 200 people across Canada have been involved in building the Diabetes Charter for Canada. This companion document aims to: explain why a Diabetes Charter for Canada is needed and why measuring changes in diabetes care and support is important; describe the rights and responsibilities within the Charter; suggest indicators to monitor change; and provide links to more information on how to live well with diabetes and how you can help Canadians living with diabetes. 1

6 WHY CANADA NEEDS A DIABETES CHARTER The number of Canadians living with diabetes is growing at an alarming rate. Today more than nine million or nearly 1 in 4 Canadians are living with diabetes or prediabetes. By 2020, it is expected that almost 11 per cent of Canadians will be diagnosed with diabetes, costing the health system approximately $16 billion every year. If nothing is done, by that time, diabetes and prediabetes will affect 1 in 3 Canadians. People living with diabetes in Canada should be given the opportunity to achieve their full health potential through adequate access to needed care and support. The Association has been actively advocating the need for better access to high quality care and support for all Canadians living with diabetes. The report entitled An Economic Tsunami: the Cost of Diabetes in Canada confirmed the rising costs of diabetes to the health system and the broader economy, in addition to the challenges faced by Canadians living with diabetes. Indeed, Canadians living with diabetes have reason for concern: diabetes-related hospitalizations occur more frequently in Canada than the average rate in other OECD (Organization for Economic Co-operation and Development) countries. Canada also has the third-highest diabetes-related mortality rate among its peer countries. The rate of lower extremity amputations is mid-level, ranking 8 out of 18 OECD countries (figure 1). Furthermore, access to care, education, medications, devices, supplies and healthy foods vary widely across jurisdictions in Canada, income levels, ethnic and cultural backgrounds. People with diabetes experience stigma and discrimination in schools, at workplaces and in other public places, which creates additional barriers to full participation in society. Many also feel left out of the decision-making regarding their own care plans. Their caregivers, isolated from a supportive network, can feel overwhelmed by the responsibility of caring for people with diabetes. For people to optimally manage their diabetes, all of these issues need to be addressed. The Diabetes Charter for Canada gives a voice to those included in the diabetes community. It presents a common vision through a set of principles that confirm the roles of key individuals within the community. It is hoped that the Charter will serve as a catalyst for positive change over time and help all Canadians living with diabetes reach their health potential. Information and education are essential Participants at the Calgary regional workshop help build the Diabetes Charter. June 2013 Challenging stigma and discrimination: Participants at the Calgary regional workshop help build the Diabetes Charter Figure 1: Avoidable hospitalizations : Canada s rate of 23.3 per 100,000 is above the OECD average of 21 per 100,000 New Zealand Netherlands Italy Switzerland Germany Korea Spain Sweden Denmark Norway Austria Belgium Canada Poland Finland U.K. U.S.A Sources: OECD, IDF 2009 Lower-extremity amputations : Canada was below the average of about 15 amputations per 100,000 population across OECD countries Austria Korea U.K. Italy Poland Norway Finland Canada Netherlands New Zealand Sweden France Switzerland Denmark Belgium Portugal Spain U.S.A Diabetes-related mortality: Canada has the third-highest mortality rate among peer countries, with 18 deaths per 100,000 population Japan Finland U.K. Norway Switzerland France Ireland Sweden Australia Netherlands Germany Denmark Italy Canada U.S.A Austria Diabetes Charter for Canada: Companion Document

7 WHY MEASURING CHANGE IS IMPORTANT What gets measured is what gets done Dr. Margaret Chan, World Health Organization More than two decades ago, European countries and health organizations became aware of the importance of diabetes care targets within their health care systems. Together they created the Saint Vincent Declaration in 1989, which stated the importance of measuring national progress towards clearlydefined diabetes care targets. The Declaration and the following Istanbul Commitment of 1999 helped trigger a lasting continent-wide improvement in diabetes care. Canadian governments are also becoming increasingly aware of the importance of setting targets and using them to track and report on health system performance. Yet, in the area of diabetes, there are no consistently reported measures across the spectrum of diabetes care within Canada using a common set of well-defined indicators. Each jurisdiction selects their own indicators to measure the quality of diabetes care; sometimes the data vary across health authorities within a jurisdiction, and not all data are publicly available. Moreover, other needed supports for better diabetes management, such as access to medications, diabetes education, healthy foods, accommodation at workplaces and in schools, are not being measured and reported. Therefore, it is difficult to know the complete picture of diabetes care and supports in Canada and whether diabetes care and supports are improving over time. Given the overwhelming burden of diabetes on Canadians and health care systems across the country, it is more important than ever to select appropriate indicators for diabetes care, followed by regular monitoring and reporting on progress. In this document, the explanations of rights and responsibilities are followed by proposed indicators which can measure changes in diabetes care and supports in Canada. Partnership in Action: Participants at the Ottawa regional workshop help build the Diabetes Charter 3

8 RIGHTS AND RESPONSIBILITIES OF CANADIANS LIVING WITH DIABETES * Canadians Living with Diabetes Be treated with respect, dignity, and be free from stigma and discrimination. Many Canadians experience discrimination and stigma because of their diabetes. Stigma is a form of prejudice that spreads misinformation, labels individuals and perpetuates negative stereotypes. Some children are excluded from school activities such as field trips because of their diabetes, or left alone when they are experiencing dangerous health conditions such as hypoglycemia. Some people with diabetes have been denied jobs without having an opportunity to discuss their individual circumstances with their potential employer. Discrimination about diabetes in any form can have a negative impact on the mental well-being of people with diabetes and the self-management of their disease. As a result of stigma or fear of stigma, 37% of people with type 2 diabetes surveyed by the Association reported that they do not feel comfortable disclosing their diabetes. 1 People with diabetes should be free from all forms of discrimination and allowed to do what is necessary to manage their diabetes in public places, including treating or preventing hypoglycemia or hyperglycemia. Canadians Living with Diabetes Affordable and timely access to prescribed medications, devices, supplies and high quality care, as well as affordable and adequate access to healthy foods and recreation, regardless of their income or where they live. All Canadians living with diabetes should be given the opportunity to reach their health potential. However, many are unable to afford the supports they need to optimize their health these supports include prescribed medications for their diabetes, devices such as insulin pumps, supplies such as blood glucose test strips, and comprehensive care from a well-coordinated health team. The Association s research shows that people living in certain parts of Canada need to pay thousands more on diabetes medications, devices and supplies, have more difficulty receiving recommended care and seeing diabetes educators. 2,3 As a result, 57% of Canadians with diabetes report they cannot adhere to the prescribed treatment plans due to the cost of needed medications, devices and supplies. 4 Along with needed medications, healthy food choices are also essential to good diabetes management and to help prevent type 2 diabetes. All Canadians should have access to affordable, sufficient, safe and nutritious food. People living in remote or northern communities or those with below-average income often have more difficulty in affording healthy food choices than other Canadians. This phenomenon, often described * and their informal caregivers where relevant 1 Canadian Diabetes Association. Diabetes: Canada at the Tipping Point - The Public Perspective. A National Survey. Prepared for The Canadian Diabetes Association by Environics Research Group; documents/publications-and-newsletters/advocacy-reports/environics-opinion-poll-report-english.pdf 2 Ibid. 3 Canadian Diabetes Association. The Burden of Out-of-pocket Costs for Canadians with Diabetes. Toronto: Canadian Diabetes Association; burden-of-out-of-pocket-costs-for-canadians-with-diabetes.pdf 4 Ibid. 4 Diabetes Charter for Canada: Companion Document

9 as food insecurity, results in compromises in food selection and consumption and stress or anxiety related to obtaining sufficient quality food. Food insecurity ranges from occasional hunger to severe food deprivation. Across this continuum, food insecurity also has psychological and social manifestations. Similarly, families with low income have less access to recreational activities (i.e. less park space and fewer sidewalks in low income communities as well as difficultly affording recreational activities that are paid by the individual). Lack of comparable access to essential supports for diabetes management compromises the health of people with the disease. These inequities must be addressed to ensure that people with diabetes can lead healthy lives. Many Canadians are living with diabetes yet do not know it. According to the Public Health Agency of Canada, undiagnosed diabetes represents more than 20 per cent of all cases of diabetes. 5 This represents a missed opportunity for our health care system to take timely action to prevent or delay the development of serious diabetes complications, including heart attack, stroke, kidney disease, blindness, lower-limb amputation and depression. Offering regular screenings for diabetes at public venues and workplaces can help identify people with diabetes or with prediabetes early on, who can then start working with their health care providers to prevent or manage their diabetes. It is also normal to have many questions after a diabetes diagnosis. A consultation with a member of the professional team soon after diagnosis can teach people with diabetes how to self-manage their condition. This consultation includes an explanation of what diabetes is, developing a diet plan, learning how to use insulin and other medications if required, measuring blood glucose, and recognizing the early signs of hypoglycemia and hyperglycemia. The educators also support people with diabetes in dealing with stress and anxiety that can happen with the diagnosis. Recent research shows that only one in five adults newly diagnosed with diabetes in Ontario attended a self-management education program within 6 months of their diagnosis. 6 Canadians Living with Diabetes Timely diagnosis followed by education and advice from an interprofessional team which could include the primary care provider, diabetes educator, nurse, pharmacist, dietitian and other specialists. 5 Public Health Agency of Canada. Diabetes in Canada: Facts and Figures from a Public Health Perspective. Ottawa; Cauch-Dudek, K, Victor JC, Sigmond M, Shah BR. Disparities in attendance at diabetes self-management education programs after diagnosis in Ontario, Canada: a cohort study. BMC Public Health 2013; 13:85 5

10 RIGHTS AND RESPONSIBILITIES OF CANADIANS LIVING WITH DIABETES Canadians Living with Diabetes Emotional and mental health support, as well as support for their caregivers if needed. Canadians Living with Diabetes Be an active partner in decision making with their health care providers. Canadians Living with Diabetes Have access to their medical records and other health information when requested, and have it easily understood. People with diabetes and those who care for them often experience a great deal of stress and anxiety because of the diabetes diagnosis and the ongoing demands to manage diabetes. Approximately 30 per cent of people with diabetes suffer from depression. 7 These psychological issues can have a negative impact on diabetes management and blood glucose control. Emotional and mental health support, either as part of the diabetes care plans or within the broader society, should be provided to people with diabetes as well as their caregivers to support selfmanagement of the disease. Canadians with diabetes should be actively involved in making decisions about their own care in collaboration with their health care providers, such as developing their care plans. A trusting, collaborative relationship between people with diabetes and their health care providers is also important for improving selfcare. 8 Relationships between people with diabetes and their health care providers should be founded on mutual respect, understanding, and freedom from judgement. The primary function of health care records is to record important clinical information, which may need to be accessed by the health care professionals involved in patient care. Access to a person s personal health information, such as blood test results, is an important part of self-management and can help engage patients in their own care. All people with diabetes have a right to view this information directly and have their health care providers explain it to them in a way that they can understand. 7 Canadian Diabetes Association 2013 Clinical Practice Guidelines for the Prevention and Management of Diabetes in Canada. Can J Diabetes 2013;37(suppl 1): S87. 8 Ibid. S27. 6 Diabetes Charter for Canada: Companion Document

11 Access to accurate information and education about diabetes allows people with diabetes to better self-manage their condition. However, many Canadians experience challenges trying to obtain information or education in a language and level that they understand and can use, or to receive advice on how to embed diabetes management into their own cultural or religious practices such as fasting or cooking certain foods. Being able to receive information as well as care that consider all these important aspects of a person s background is essential in better management of diabetes. The saying an ounce of prevention is worth a pound of cure is especially true for people with diabetes. People with diabetes are at risk of developing potentially life-threatening complications. To prevent or delay these serious complications, people with diabetes need to receive regular monitoring and care as recommended by clinical practice guidelines including eye exams, foot exams, screening for kidney disease and mental health issues, regular monitoring of blood glucose control and cardiovascular risk factors. Studies show that less than one-third of Canadians with diabetes receive all four clinically recommended tests, namely A1C tests, urine tests, eye exams and foot exams, from their health providers. 9 People with diabetes often face discrimination when seeking insurance, simply on the basis of their diagnosis. Some people are immediately denied insurance; others are compelled to pay extraordinarily high premiums. Lack of affordable insurance coverage, such as travel or car insurance, can leave people with diabetes vulnerable. This is unfair as many people with diabetes are well managed and should not be considered to be high risk for insurance purposes. People with diabetes should be able to access adequate insurance coverage at a reasonable cost assessed on an individual basis. Canadians Living with Diabetes Diabetes information, education and care that take into account a person s age, culture, religion, personal wishes, language and schooling. Canadians Living with Diabetes Have their eyes, feet, kidneys, blood glucose control, cardiovascular risk factors and mental health checked as often as recommended by current clinical practice guidelines. Canadians Living with Diabetes Affordable access to insurance coverage. 9 Canadian Institute for Health Information. Diabetes Care Gaps and Disparities in Canada. (2009) 7

12 RIGHTS AND RESPONSIBILITIES OF CANADIANS LIVING WITH DIABETES Canadians Living with Diabetes Appropriate and seamless transitional care that recognizes the progression of the disease. Children with Diabetes Fully participate in daycare, preschool, school and extracurricular activities, receiving reasonable accommodation and assistance if needed. Transition to adult care is identified as a gap experienced by many young adults. Between 25 and 65 per cent of young adults are reported to have no medical follow-up during the transition from pediatric to adult diabetes care services. 10 Organized and well-prepared transition to adult care needs to include appropriate support and education to ensure the transition is smooth and seamless. Children with diabetes at school rely heavily on a care network made up of their parents, guardians, school staff and health care providers. It is important that these people communicate and coordinate with each other to support students with diabetes and their caregivers. However, children are sometimes stigmatized, left out of the full school experience or placed in vulnerable circumstances. Challenges within the schools faced by students with diabetes and their families include: lack of understanding about diabetes and its management among school staff; lack of flexibility in school rules to support basic diabetes management needs (e.g. no juice or blood glucose testing allowed in classrooms); lack of assistance with blood glucose testing and insulin administration during school hours for students not yet able to self-manage; and lack of support for students with diabetes during extracurricular activities, leading to some children being excluded from sporting events, field trips, etc. Daycares, Preschools, and Schools have the responsibility to: Ensure staff and the child s peers have accurate information about diabetes, provide a safe environment for diabetes selfmanagement and protect children with diabetes from discrimination. All children with diabetes have the right to fully participate in their school or extracurricular activities. They should not be excluded from events due to unwarranted fears or misinformation. They must also not be placed at risk and be allowed to test their blood glucose, inject insulin, and have a snack as needed in a safe environment. Preschools, schools and daycares have a responsibility to ensure their staff and other students have accurate information about diabetes. School administration should work with each student living with diabetes, their parents/caregivers and health care professionals to develop and communicate to school personnel an Individual Care Plan that complies with the student s prescribed diabetes management regimen. School personnel should be trained to recognize emergency situations and to respond appropriately according to the student s individual care plan. 10 Canadian Diabetes Association 2013 Clinical Practice Guidelines for Prevention and Management of Diabetes in Canada. Can J Diabetes 2013;37(suppl 1): S Diabetes Charter for Canada: Companion Document

13 Stronger Together: Participants at the Halifax regional workshop help build the Diabetes Charter. June 2013 Advances in diabetes care now make it possible for most Canadians living with diabetes to fully participate in the workforce. Most people with diabetes can perform their job duties with minimal accommodation by the employer, such as nutrition breaks, time for glucose level monitoring, agreed upon area for glucose monitoring, and/or injection of insulin. Flexible scheduling also helps people attend appointments with health providers, or care for people with diabetes who are unable to self-manage. Today in Canada, people with diabetes may face discrimination in the workplace simply because they have diabetes. Employers have terminated, demoted or denied positions to employees with diabetes without having adequate knowledge of the disease and without reasonable investigation into individual circumstances. Canadians living with diabetes should not fear they will lose their jobs or be denied promotions if they tell their employers that they have diabetes. A person with diabetes should be eligible for employment in any job for which he or she is individually qualified. In being considered for employment in safety-sensitive positions, a person with diabetes has the right to be assessed for specific job duties on his or her own merits based on reasonable standards that are applied consistently. Canadians living with diabetes need to play an important role in managing their diabetes every day. Self-management allows a person to take an active role in managing their own care through problem solving and goal setting. 11 Self-management of diabetes can include exercising, meal planning, adhering to care plans, taking medications, measuring blood glucose, and keeping track of one s mental health and emotions. It is a responsibility of people living with diabetes to self-manage to the best of their abilities. In addition, the more people learn about diabetes, the more effectively they can manage their condition. While health care providers suggest treatment, provide information and education, the person with diabetes should also seek out information and support that would enable them to manage better. To help their health care providers to design the most appropriate care plan, people with diabetes should also give accurate information about their own health. Employees Living with Diabetes Supportive workplaces that do not discriminate and make reasonable accommodation as needed. Workplaces have the responsibility to: Create an environment where people can reach their full potential by providing accommodation and eliminating discrimination against people with diabetes. Canadians Living with Diabetes have the responsibility to: Self-manage to the best of their abilities and personal circumstances, including a healthy diet, exercise, following care plans and attending appointments. Be honest and open with health providers about their current state of health so that the most suitable care plans can be created. Actively seek out education, information and support to live well with diabetes. Respect the rights of other people with diabetes and health care providers. 11 Canadian Diabetes Association 2013 Clinical Practice Guidelines for Prevention and Management of Diabetes in Canada. Can J Diabetes 2013;37(suppl 1): S23. 9

14 Diagnosis HOW TO MEASURE PROGRESS > > The proportion of Canadians living with diabetes who are undiagnosed > > Time from diabetes diagnosis to first visit with a certified diabetes educator Information and Self-Management > > The proportion of Canadians living with diabetes: Able to name and act appropriately on the signs and symptoms of hyperglycemia and hypoglycemia Practicing self-monitoring of blood glucose Having a written care plan > > The proportion of Canadians living with diabetes receiving required tests and meeting treatment targets: Blood glucose control (hba1c) Cholesterol Blood Pressure Waist Circumference/Weight/BMI Hours of weekly exercise Access > > The proportion of Canadians with diabetes who have a primary care provider > > The proportion of Canadians with diabetes who are able to access appropriate medications, devices and supplies as recommended by their health care professionals, as measured by out-of-pocket expenses > > Median referral time from primary care to: Professional mental health and emotional support Endocrinologist Chiropodist/Podiatrist Dietitian Cardiologist Ophthalmologist Respect and Dignity > > Human rights complaints related to diabetes discrimination > > Affordable insurance policies accessible to Canadians living with diabetes > > Survey of public attitudes concerning diabetes Children in School > > School Board policies that: Affirm the right of children to self-manage Educate staff and all students about diabetes Address bullying children with diabetes Employment > > Acknowledgement of diabetes discrimination in employment legislation and measures to address it > > Workplace legislation and policies that accommodate self-management of diabetes 10 Diabetes Charter for Canada: Companion Document

15 RESPONSIBILITIES OF GOVERNMENTS Addressing diabetes effectively requires comprehensive strategies and plans, ongoing investment, ambitious goals and sustained efforts with a focus on preventing diabetes and its complications while supporting people living with diabetes. The complexity of diabetes requires that a systematic plan is put in place to develop and implement prevention programs at the local level that regularly screen people for diabetes or prediabetes. It also requires primary and specialty care, diabetes programs, hospitals and other health settings to focus on the prevention of complications. Federal, provincial, territorial governments and public health units at the municipal level all have a role in the development and actualization of diabetes plans. These strategies and plans should be centrally managed with seamless funding allocations between government departments to ensure the optimum benefits to those living with diabetes, and the best use of government funds given limited resources. Systematic and ongoing diabetes surveillance is needed to help governments and other stakeholder groups to plan, implement and evaluate their diabetes plans and programs. The Canadian Chronic Disease Surveillance System (CCDSS) is the mechanism developed to provide improved data about diabetes. Health care data related to diabetes from the provinces, territories and federal government agencies are collated by the Public Health Agency of Canada for synthesis and national analysis and reporting. While the Auditor General of Canada found that this system is currently the most advanced of its systems for tracking chronic diseases, 12 there is room for improvement to consistently collect and report on data on the diabetes burden, such as costs and complications. Also, gaps remain in surveillance information on the prevalence of undiagnosed diabetes, blood glucose control and in targeted surveillance of high-risk populations such as Aboriginal peoples, children and youth. Governments have the responsibility to: Form comprehensive policies and plans for the prevention, diagnosis, and treatment of diabetes and its complications. Governments have the responsibility to: Collect data on diabetes burden, such as costs and complications, and to regularly evaluate whether progress is being made. While jurisdictions and programs gather, analyze and report on diabetes, there is a real need to develop and implement common indicators across jurisdictions and programs to facilitate the analysis, interpretation and reporting on diabetes risk factors, care practices and accessibility, morbidity and mortality. Data need to be collected regularly and consistently through surveys, administrative data, registries and special studies. These data can then be used to describe the magnitude and burden of diabetes, monitor changes over time, guide programs, share best practices, and inform decisions and policies. 12 Report of the Auditor General of Canada. Chapter 5: Promoting Diabetes Prevention and Control. Spring

16 RESPONSIBILITIES OF GOVERNMENTS Governments have the responsibility to: Guarantee fair access to diabetes care, education, prescribed medications, devices, and supplies to all Canadians, regardless of their income or where they live. Canadians living with diabetes should be given the opportunity to achieve their full health potential. Yet, affordability and access to healthy foods, prescribed medications, supplies, care and education are significant barriers for many and vary widely across income levels, ethnic and cultural backgrounds and geographical locations across Canada. Currently, the price of medications for diabetes and related complications varies across Canada, making certain medications unattainable to many. Governments have a responsibility to ensure that regulatory and reimbursement processes across jurisdictions support all Canadians living with diabetes in accessing the medications they need at affordable costs. Access to diabetes education offered by certified diabetes educators is also not consistently available across the country, although it has been demonstrated to be an invaluable resource in diabetes self-management. Access to family physicians and specialist physicians is also essential for ongoing management of diabetes and prevention of complications. Governments must help to ensure comparable access to diabetes care and education for all Canadians living with diabetes. Governments have the responsibility to: Address the unique needs and disparities in care and outcomes of vulnerable populations who experience higher rates of diabetes and complications and significant barriers to diabetes care and support. Special attention must be paid to high-risk populations who are particularly vulnerable to diabetes and its complications. Aboriginal, First Nations and Métis peoples, both on and off reserves, experience extremely high rates of diabetes and its complications diabetes prevalence is 3 to 5 times higher in First Nations than in the general population. Aboriginal women in Canada also experience gestational diabetes rates 2 to 3 times higher than others. Many more children and youth in these communities are diagnosed with type 2 diabetes compared with the general population. Aboriginal peoples also face higher rates of chronic kidney disease, lower limb amputation and more severe eye disease. 13 Despite the disproportionately heavier burden of the disease, Aboriginal people face significant barriers to needed care and support, including poor access to medications, family physicians and other providers on the care team, physician specialists, diabetes educators, and community support groups. While these issues pose challenges to many Canadians, the magnitude of the access inequity facing the Aboriginal population is severe and exacerbated by living in remote areas, difficulties with navigating the insurance systems and lack of infrastructure to support healthy living. Individuals from specific ethno-cultural populations, both newcomers and those who are Canadian-born (e.g., African, South Asian, South-east Asian, Hispanic) also face a higher risk of the disease. Newcomers to Canada often find it challenging to obtain culturally and linguistically appropriate education and care. Additionally, people who live in poverty, are homeless, or live with certain chronic mental health conditions bear a heavier burden of diabetes. 12 Diabetes Charter for Canada: Companion Document 13 Canadian Diabetes Association 2013 Clinical Practice Guidelines for Prevention and Management of Diabetes in Canada. Can J Diabetes 2013;37(suppl 1): S191-S192.

17 What Change Do We Want to See? Ottawa Regional Workshop Governments have a responsibility to work with people affected by diabetes in these vulnerable communities to support policies and programs to address these disparities. People with diabetes may face discrimination at schools or in workplaces simply because they have diabetes. It is important to note that most people with diabetes can perform their duties with minimal accommodation by the school or employer (e.g. nutrition breaks) to monitor their blood glucose, administer insulin and treat hypoglycemia and hyperglycemia conveniently and safely wherever and whenever required. Governments have the responsibility to: Implement policies and regulations to support schools and workplaces in providing reasonable accommodation to people with diabetes in their self-management. However, some students may be unable to perform daily diabetes management tasks and may require someone to assist with administering insulin, monitoring blood glucose, or supervising food intake and activity. As a result, many parents or guardians regularly visit their children at school or school-related activities to assist with daily diabetes management tasks. Given the seriousness of the condition, students with diabetes, their parents, caregivers and school personnel must be clear and confident in their roles and responsibilities for the care of children living with diabetes. Provincial and territorial governments should work with school boards to develop and implement school policies that meet the needs of children living with diabetes, with input from members of the diabetes community. Precedents exist to accommodate the needs of children with life-threatening conditions, such as Sabrina s Law in Ontario, which ensures all school boards have policies or procedures in place to address anaphylaxis in schools, including instructions to staff and guidance on the administration of medication. 14 In the workplace, individual assessment tools tailored specifically for the job circumstances and developed jointly by the employer, employee, and health care practitioners can minimize actions such as demotion, denied promotion or termination as a result of discrimination or a lack of understanding about diabetes. Governments across Canada should lead the way by acting as model employers, developing policies and guidelines in their respective jurisdictions about supporting employees with diabetes and offering reasonable accommodation. 14 See The Elementary Teachers Federation of Ontario. Epi-pen Fact Sheet and Sabrina s Law. 13

18 Accountability HOW TO MEASURE PROGRESS > > Existence of a publicly-funded diabetes strategy in every province and territory > > Hospitalization rates among people with diabetes > > Annual rates of complications for people living with diabetes including: Kidney failure Stroke Cardiovascular disease Foot ulcerations Lower extremity amputation (minor/major) Blindness (retinopathy) Mental health issues (e.g. depression, anxiety) Poverty, Food, Living Environment and Prevention > > The proportion of Canadians screened for diabetes as indicated by clinical practice guidelines > > The proportion of Canadians living with diabetes who receive the following examinations as recommended by clinical practices guidelines: LDL cholesterol test HbA1C test Foot/neuropathy test Depression screening with PHQ-2 tool All preventative screening tests done as recommended > > The proportion of Canadians who are: Physically inactive Overweight/obese Experiencing food insecurity > > Full public health insurance coverage of preventative screening in all provinces and territories: Eye examinations, by optometrists or ophthalmologists Foot examinations, by physician, qualified nurse, podiatrist or chiropodist Dietary advice, from a registered dietitian Cardiovascular risk factor assessments Mental health assessments > > Aboriginal, First Nations and Métis people and other high-risk populations enrolled in culturally appropriate diabetes education programs Data > > Diabetes prevalence, by type, province, age, sex, and income level > > Establishment of pan-canadian diabetes metrics and a unified database > > Public reporting of these pan-canadian metrics annually 14 Diabetes Charter for Canada: Companion Document

19 Rights and Responsibilities: Access to Quality Care Halifax Regional Workshop RIGHTS AND RESPONSIBILITIES OF HEALTH CARE PROVIDERS New evidence and information on diabetes is constantly being produced. Health care providers need to stay up-to-date in order to help the people for whom they care. However, many health care providers report that they do not have the time, funding or support from their employers to fulfill this responsibility. To address this challenge, they should receive ongoing training and have access to knowledge translation tools that support the provision of high quality diabetes care. Funding needs to be available to facilitate continuing education for all health professionals. A diabetes health care team involves several health professionals from different disciplines, working together to deliver comprehensive patient care. This can include family physicians, specialist physicians, nurses, dietitians, pharmacists, psychologists, social workers, podiatrists, health educators dentist and others. Evidence shows diabetes team-based care improves patient outcomes. This includes an expansion of professional roles, in cooperation with the collaborating physician, for monitoring or medication adjustment and disease management, as well as patient education, coaching and care coordination. 15 These teams also offer other benefits such as patient satisfaction, more efficient use of resources and potentially, enhanced job satisfaction for team members. Patient-centred care is defined as providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions. 16 Close collaboration between patients and their health care providers is essential to the successful management of a chronic condition like diabetes. Health care providers are well placed to help people living with diabetes and their caregivers navigate the often challenging health care systems. Both patients and health care providers must work together to ensure that the treatment plans are based on the best evidence and consistent with the patient s own preferences. Health Care Providers Ongoing training, funding and tools needed to provide high quality diabetes care. Health Care Providers Work in well-coordinated teams, either at the same location or virtually, where support from specialists who provide diabetes care can be obtained within a reasonable time. Health Care Providers have the responsibility to: Treat people with diabetes as full partners in their own care. Help people with diabetes and their caregivers navigate the health care system. 15 Canadian Diabetes Association 2013 Clinical Practice Guidelines for Prevention and Management of Diabetes in Canada. Can J Diabetes 2013;37(suppl 1): S Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century

20 Health Care Providers have the responsibility to: Learn and apply up-to-date evidenced-based clinical practice guidelines when caring for people with diabetes. Diagnose people living with diabetes as early as possible. Early diagnosis of diabetes or prediabetes allows people to actively manage their health and work with their health care providers to prevent the onset of diabetes complications. Health care providers must also ensure that their patients living with diabetes are screened for the early signs of complications. This includes regularly checking their eyes, feet, kidneys, blood glucose, cardiovascular risk factors and mental health in accordance with the most recent clinical practice guidelines. Diagnosis of complications through preventative screening is extremely important since early screening can help delay or prevent serious and potentially life-threatening complications. Working Together HOW TO MEASURE PROGRESS > > Patient satisfaction surveys > > Avoidable emergency department visits by people living with diabetes > > The proportion of Canadians living with diabetes who are able to regularly communicate with their primary care provider in-person, through or phone > > Diabetes Education Programs targeting specific communities, including: Canadians from specific ethno-cultural populations (e.g., African, South Asian, South-east Asian, Hispanic) who face a higher risk of the disease, including both newcomers and those who are native-born First Nations, Métis, Aboriginal, Inuit peoples, both on- and off-reserve Canadians living in poverty Homeless Canadians Canadians with mental illness Keeping Up-To-Date > > Dissemination of the Canadian Diabetes Association s Clinical Practice Guidelines > > Attendance at accredited diabetes education programs, e.g. Continuing Medical Education (CME), Nursing Continuing Education (CE) Resources > > Defined care pathways for people with diabetes > > The proportions of physicians submitting a diabetes management billing code > > Use of telemedicine in diabetes care 16 Diabetes Charter for Canada: Companion Document Collaboration is Key: Participants at the Vancouver regional workshop help build the Diabetes Charter. June 2013

21 Emotional Support and Mental Health Vancouver Regional Workshop Summing Up: Ottawa Regional Workshop RESPONSIBILITIES OF THE CANADIAN DIABETES ASSOCIATION The Canadian Diabetes Association has the responsibility to: Strongly advocate for the rights of people living with diabetes on behalf of Canada s diabetes community. Raise public awareness about diabetes. Work to ensure the accuracy of information about diabetes in the public domain. Partner with researchers to improve the planning, provision and quality of diabetes care by promoting and applying research. Advocate for equitable access to diabetes care, education, medications, devices and supplies. The mission of the Canadian Diabetes Association is to help people with diabetes lead healthy lives while we work to find a cure. To this end, we provide innovative programs and services to help people manage their diabetes, and support their health care providers by facilitating research and professional education. The Canadian Diabetes Association is and must continue to be a strong voice for improving the lives of people living with diabetes by advocating for diabetes self-management, research and professional education. As part of this effort, it is our responsibility to demand equitable access to diabetes care, education, programs and services, and healthy food across the country. It is our responsibility to help improve diabetes care funding for innovative research in order to make care more effective, help people self-manage, and help governments make better decisions. It is our responsibility to raise public awareness about diabetes and work with others to promote positive, accurate messages. Last but not least, it is our responsibility to empower people with diabetes and their caregivers, and to support the advocacy efforts of people living with diabetes. Working together with the diabetes community, we will continue to meet our responsibilities. 17

22 WHERE TO GET MORE INFORMATION Canadian Diabetes Association Regional Offices: The regional offices of the Canadian Diabetes Association play an important role in communities all across Canada. Each office provides diabetes programs and services, hosts events, and offers a variety of fundraising and volunteer opportunities for the people in their community living with diabetes or prediabetes. There are a number of ways you can connect with your local office. To find more information about the Canadian Diabetes Association in your area, please visit contact/regional-offices and click on your province. Clinical Practice Guidelines Published every five years, the Canadian Diabetes Association s Clinical Practice Guidelines for the Prevention and Management of Diabetes in Canada represent the best and most current evidence-based clinical practice data for health care professionals. On a global stage, the Guidelines support the Canadian Diabetes Association s status as a leader in diabetes prevention and management, and help physicians guide their patients in the screening, prevention, diagnosis, care, management and education for Canadians living with type 1, type 2 and gestational diabetes. The guidelines are available at 18 Diabetes Charter for Canada: Companion Document

23 ABOUT THE CANADIAN DIABETES ASSOCIATION Across the country, the Canadian Diabetes Association is leading the fight against diabetes by helping people with diabetes live healthy lives while we work to find a cure. Our community-based network of supporters help us provide education and services to people living with diabetes, advocate for our cause, break ground towards a cure and translate research into practical applications. For more information, please visit diabetes.ca, join us on facebook.com/canadiandiabetesassociation, follow us on or call BANTING ( ). 19

24 Background Document: Diabetes Charter for Canada