Module 5: Cancer Care Ontario and The Aboriginal Cancer Strategy

1. Module 5: Cancer Care Ontario and The Aboriginal Cancer Strategy

2. Welcome to Cancer Care Ontario and the Aboriginal Health Strategy. This course takes 30 minutes to complete. There is a quiz at the end of each chapter and a link to handouts and resources at the end of the learning module. There is a quiz at the end of each chapter and a link to handouts and resources at the end of the learning module. Select the arrow keys at the bottom of your screen to move forward and move back, or to stop and start the module.

3. Course Learnings By the time you complete this learning module, you will be able to identify: CCO’s vision and Aboriginal Cancer Strategy II (ACS II) ACS II Strategic Priorities Strategic Accomplishments and Future Direction Cancer Care Ontario and the Aboriginal Cancer Strategy

4. Insert Pre-Test Quiz Slide Q: Name two of the Aboriginal Cancer Strategy II’s strategic priorities. A:____________________________________ Move forward to begin Chapter 1

5. Chapter 1: Overview of the Aboriginal Cancer Strategy II

6. Cancer Care Ontario’s Mandate and Vision

7. Cancer Care Ontario (CCO) is an agency of the provincial government of Ontario, responsible for planning, coordinating and improving cancer services across the province. This mandate includes ensuring patients receive better care every step of the way, through planning and coordinating cancer services across the province. CCO’s goal is to prevent cancer in the first place by promoting healthy living, and to catch it early through screening and detection services. CCO partners with many health professionals, organizations and groups involved in cancer prevention and care to make this goal a reality.

8. The 13 Regional Cancer Programs (RCPs) located across the province in the Local Health Integration Network regions are CCO’s most important partners.

9. Each RCP is led by a Cancer Care Ontario Regional Vice President.Pictured: Dr. Mark Hartman, RVP, Regional Cancer Services, Northeast (Sudbury)

10. The Ontario Cancer Plan III • CCO aims to provide people with the knowledge they need to make informed decisions about their care. CCO’s Ontario Cancer Plan III (OCP III) is the guide for Ontario’s cancer system. It is the third cancer plan that has been developed since 2005. The OCP III focuses people and patients in prevention, screening, diagnosis, treatment, follow-up and palliative care. Through this plan, CCO will: • strengthen its patient-centred approach to cancer control, • continue to improve the quality of the system, • provide individuals with the knowledge they need to make informed decisions affecting their care. The OCP III is driven by a commitment to quality and is guided by CCO’s vision of providing Ontarians with the best cancer system in the world. Developing the best cancer system in the world is not just about ensuring that clinical practice is evidence-informed; it also involves ensuring that cancer patients have equitable access to cancer services. A key goal of CCO is to improve the performance of the cancer system with and for, Aboriginal peoples in Ontario.

11. Vision To improve the performance of the cancer system with and for FNIM peoples in Ontario in a way that honours the Aboriginal Path of Well-being.

12. Following The Aboriginal Path of Well-beingCCO’s goal is to improve the performance of the cancer system with and for Aboriginal peoples in Ontario in a way that honours the Aboriginal Path of Well-being. The steps on this path are: 1. Health in balance: giving equal importance to all aspects of health 6. Joint and personal responsibility: health and well-being is the responsibility of the individual, family and community 2. Wellness: both emotional and spiritual 3. Active choice: one’s ownership for health decisions 4. Holistic approach: balance the mind, body, and spirit with community and environment 5. Understand root causes: past and present aspects that impact health

13. The Need for a Specific Aboriginal Cancer Strategy The OCP III identified an urgent need to reduce preventable cancers in FNIM populations. Studies have shown that cancer incidence has risen dramatically in each of the First Nations, Inuit and Métis (FNIM) populations over the past few decades. From being nearly unknown a few generations ago, cancer is now among the top three causes of death among FNIM people. In particular, breast and colorectal cancer in First Nations people and lung cancer in the Inuit population are on the rise.

14. About half of all cancer deaths are related to commercial tobacco use, diet and physical activity. Smoking rates among FNIM people are much higher than in the remaining Canadian population. Lack of consumption of fruits and vegetables, and physical inactivity are also reported to be higher among FNIM people.

15. Cancer survival is worse for FNIM than for other Ontarians. Some of the reasons include: • FNIM people are diagnosed with later stage cancers. • Access to screening and treatment services is difficult for many FNIM people living in rural and remote communities. • Challenges within the health system in Ontario: • A lack of awareness and understanding of important cultural elements can reduce the effectiveness of treatment • A lack of health-care resources in communities and poor co-ordination of care between hospitals and primary care providers can undermine follow up and palliative care • Challenges at the community level: There is a reported lack of awareness about cancer and successes in its prevention and treatment. • The lack of culturally relevant educational materials and expertise also contributes to this knowledge gap. • These factors emphasized the need for a specific cancer control strategy to reverse these trends.

16. A snapshot of FNIM Cancer Profiles

17. First Nations: Cancer Profile Prior to 1991, Ontario First Nations had lower rates of cancer and deaths from cancer than the general Ontario population. Since 1991, incidence rates for colorectal, lung, breast and prostate cancers have been increasing in the Status First Nations. As with the general population, the incidence of cervical cancer has decreased. First Nations people in Ontario have poorer survival for cancers of the breast, colorectal, prostate and lung than Ontarians from the general population. A recent study examining reasons for poorer breast cancer survival in First Nations women compared to non-First Nations Ontarians identified later stage at diagnosis and greater co-morbidity as the two major determinants of survival differences (Sheppard et al. 2010).

18. Ranking of Top Cancers for First Nations They account for >50% of cancer for both genders

19. Métis: Cancer profile Prostate, lung, breast and colorectal cancer are the most common cancers among the Métis. This is the same as for other Ontarians. Ontario Métis have a 20% lower incidence of cancer compared to the general population, except for lung cancer in females, where the rate may be as much as 40% higher Inuit: Cancer profile Historically, Inuit have had higher rates of nasopharyngeal, salivary gland and esophageal cancers, but these rates are decreasing. Rates of lung, breast, colorectal and cervical cancers have increased sharply, however, across all circumpolar regions. Lung cancer rates for Canadian Inuit males and females are the highest in the world and rising in Inuit men and women at 3.2 and 5.3 times the Canadian averages, respectively.

20. The Aboriginal Cancer Strategy II The Aboriginal Cancer Strategy II (ACS II) is a deliverable within OCP III’s Strategic Priority of Risk Reduction: Develop and implement a focused approach to cancer risk reduction to support the need to reduce preventable cancers in FNIM populations. CCO’s Aboriginal Cancer Care Unit leads the ACS II. The ACS II sets out a clear plan for reducing risk and preventing cancer from 2012 to 2015. It recognizes the challenges faced by FNIM people in Ontario (i.e. lack of health care provider understanding of important cultural health elements, lack of health-care resources in communities, poor co-ordination of care). The strategy’s goal is to establish the path, provide both the tools and the control to create change. The ACS II builds on the foundation established by the Aboriginal Cancer Strategy I that was implemented during 2004–2009, including the Aboriginal Tobacco Program, Cancer Screening and Healthy Eating programs.

21. ACS II: One Commitment

22. First Step: Engage to Develop Over an 18 month period, the Aboriginal Cancer Control Unit engaged directly with provincial FNIM groups to develop the strategy. The collaboration had a clear focus: respecting the FNIM governance structures and relevant protocols. The strategy was developed through this direct engagement approach using suggestions and guidance from the FNIM health tables and leadership. This direct engagement approach was key to developing and delivering an impactful strategy. Second Step: Educate and Build Capacity Ontario’s Regional Cancer Programs (RCPs) are the most important partner implementing the ACS II strategy. RCPs throughout the province will engage their Aboriginal clients through Aboriginal Health Care networks to actively implement the objectives and actions outlined in the strategy. Through RCP partners, Ontario’s FNIM peoples will receive cancer services that not only address their distinctive needs, but also set standards in care for rural and remote communities.

23. How this is being accomplished:

24. The goal is to work together (ACCU, RCPs and FNIM communities) to build sustainable capacity to address the burden of cancer on FNIM people across Ontario.

25. Placeholder for: Video / or Message & Photo: Michael Sherar, President & CEO CCO discussing part of the strategy Move forward to begin the quiz for this chapter

26. Insert Quiz slide: Quizzes for Chapter 1 There are two short questions for this chapter. Q: What is CCO’s vision for FNIM people and the cancer system? A: __________________________________

27. Insert Quiz slide: Quizzes for Chapter 1 Q: What are two of the challenges FNIM people face with the current cancer system in Ontario? A: __________________________________

28. Chapter 2: Strategic Priorities

29. The ACS II outlines six strategic priorities that align with the overall objectives outlined in the OCP III. The six strategic priorities are used to shape the direction of all regional FNIM cancer plans across the province. Strategic Priorities to 2015 We will review the six strategic priorities in detail including the challenge(s) they are addressing and how each challenge will be addressed.

30. Strategic Priority #1 Build productive relationships: This priority involves working with FNIM groups to formalize relationships based on trust and mutual respect. This includes formalizing and embedding the FNIM communication and engagement structures necessary to achieve success in support of the OCP III Goal: Improve the performance of Ontario’s cancer system. Challenge Canada’s constitution recognizes three Aboriginal Peoples—First Nations, Métis and Inuit - and their existing aboriginal and treaty rights. Working together to solve health problems requires respectful engagement with FNIM peoples based on the original relationship of nation to nation, built on a foundation of trust and shared decision-making. Unfortunately this has often not been the case – there has been a tangible disconnect between Aboriginal community, and the health care system, provincial and federal governments. CCO has placed ultimate importance on engaging FNIM leadership in the development and implementation of the ACS II. • Objectives • Develop and formalize a relationship protocol between CCO and each FNIM group • Establish 10 Aboriginal cancer control networks across Ontario • Establish First Nations and provincial and federal government collaboration to address First Nations cancer control issues • Action • Directly engage provincial FNIM health/advisory committees and leadership • Hire and train an Aboriginal Cancer Leads (0.2 of aRegional Cancer Program to employ an Aboriginal Patient Navigator in 10 of the 13 Regional Cancer Programs; • Support First Nations policy development with provincial and federal governments to address First Nations cancer control

31. Strategic Priority #2 Research and Surveillance: This priority will involve building and populating databases to provide accurate information for planning, surveillance and research to support the OCP III Goal: Strengthen Ontario’s ability to improve cancer control through research. Challenge “You can’t manage what you don’t measure” is as true for cancer prevention as for anything else. There is very limited recent data on the cancer journey and outcomes of Ontario’s FNIM peoples. The cancer system requires accurate FNIM baseline measures and regular updates to evaluate progress. Data sources must be comprehensive, connected, complete, valid and accessible to both local and provincial health planners. • Objectives • Develop a FNIM database of surveillance, screening and treatment statistics • Establish capacity to measure and analyze the FNIM cancer burden and screening • Complete progress evaluations and findings to inform and improve initiatives developed and launched post-2015 • Action • Engage with FNIM groups on their data and surveillance needs • Establish site locations and data-sharing agreements with FNIM groups and/or communities to ensure local access to information • Evaluate the impact of ACS II initiatives such as prevention programs (tobacco) and the navigator program

32. Strategic Priority #3 Prevention: Smoking cessation efforts will be a key focus, as will looking at other modifiable risk areas. This priority involves developing and implementing a provincial smoking cessation agenda in collaboration with FNIM groups in support of the OCP III Goal: Help Ontarians lessen their risk of developing cancer. Challenge Tobacco use is considerably higher among all FNIM peoples than for the general population. Canada’s Inuit have the highest lung cancer rate in the world. Non-ceremonial use of tobacco is linked directly to rising rates of cancer—particularly lung cancer. Compared to people who have never smoked, current smokers have greatly increased risk of laryngeal cancer (7 times the risk) and lung cancer (9–20 times the risk). Tobacco users who also drink alcohol, or also have infections such as hepatitis B or C, or who have certain genetic factors may have a further increased risk of some cancers. • Objectives • Establish a province-wide smoking cessation agenda that is supported by FNIM groups • Complete the methodology needed to measure and track FNIM smoking cessation rates • Develop a plan in collaboration with communities to build “Smoke Free Communities” as per the Chiefs of Ontario Resolution 06/39 • Action • Appoint Tobacco-Wise Program leads (north and south) to work with FNIM groups to address tobacco cessation, prevention and protection • Develop a database to monitor and measure FNIM smoking cessation activities • Coordinate and align with existing (provincial/regional) FNIM tobacco control strategies/initiatives

33. Strategic Priority #4 Screening: This priority involves developing and implementing a province-wide FNIM integrated cancer screening strategy and blitz to increase participation for cancer screening across the province. It supports the OCP III Goal: Reduce the impact of cancer through effective screening and early detection. Challenge Although FNIM rates for some cancer screening are comparable to the general population, the number of under-screened and/or never-screened FNIM Ontarians is too high. This shortcoming will be addressed through local and regional initiatives to encourage under-screened and/or never-screened people to participate in cancer screening and the implementation of the Integrated Cancer Screening (ICS) program. The information management /information technology system that supports ICS is called InScreen. This system identifies Ontarians eligible for screening and facilitates the sending of initiations, recalls and reminders for screening at appropriate intervals. InScreen also notifies when results are available, and can support targeted interventions for culturally appropriate correspondence. • Objectives • Develop FNIM identifiers and database for InScreen • Implement a province-wide FNIM integrated cancer screening program • Establish screening participation targets for FNIM peoples for Regional Cancer Programs. For example: • Erie St. Clair Regional Cancer Program: 5% increase in breast, colorectal and cervical cancer screening • North East Regional Cancer Program: 5% increase in colorectal cancer screening; 5% increase in areas where breast screening rates are higher than 50%; 10% increase in areas where breast screening rates are lower than 50% • North West Regional Cancer Program: 10% increase in breast cancer screening; administration of 1,000 Pap tests per year (cervical cancer); and distribution of 1,500 colorectal cancer test kits per year • Action • Appoint Tobacco-Wise Program leads (north and south) to work with FNIM groups to address tobacco cessation, prevention and protection • Develop a database to monitor and measure FNIM smoking cessation activities • Coordinate and align with existing (provincial/regional) FNIM tobacco control strategies/initiatives

34. Strategic Priority #5 Palliative and Supportive care: This priority will help address the Palliative and Supportive care needs of FNIM with cancer in support of the OCP III Goal: Improve the patient experience along every step of the cancer journey. • Objectives • Hire and train an Aboriginal Patient Navigator in 10 Regional Cancer Programs • Establish measures to track FNIM patient and program improvements • Develop pain and symptom management tools and pathways to be used by FNIM health providers Challenge Navigating the health system is a challenge for most patients. The cancer system is even more complex and this complexity is magnified for patients who are unfamiliar with the health system, don’t speak English or French and/or must travel far from home for treatment and care. One answer to this problem is the Aboriginal Patient Navigator—a trained person who will guide FNIM patients through the process and help them make the many decisions required along the way. Another part of CCO’s commitment to Aboriginal patient care is the expansion of tele-health services to remote hospitals, and development of better supports for FNIM patients needing end-of-life care. • Action • Hire and train 10 Aboriginal Navigators to build supportive relationships and increase palliative care knowledge and skills • Deploy the Edmonton Symptom Assessment System surveying (ESAS) and Interactive Symptom Assessment and Collection tool (ISAAC) in urban and rural communities; use tele-ISAAC, which allows cancer patients to enter their symptom scores by telephone in northern and remote communities

35. Strategic Priority #6 Education: This priority involves significantly enhancing FNIM peoples’ knowledge and awareness of cancer with a focus on prevention and screening to support the OCP III Goal: Ensure timely access to accurate diagnosis and safe, high-quality care. Challenge Early cancer diagnosis and improved survival are primary goals for CCO and ACS II. Every FNIM leader, health worker and cancer survivor CCO interviewed emphasized the importance of education and cancer awareness, and we will carry this message to FNIM peoples throughout Ontario. Traditional values emphasize the connection of spiritual, physical and mental wellness. It is a small step from that insight to knowledge of how cancer affects the body and how to prevent it. Objectives Increase FNIM knowledge and understanding of cancer, including cancer prevention and screening • Action • Review and compile existing and emerging educational resources/tools into a comprehensive and current inventory • Develop and implement province-wide dissemination strategies to ensure educational resources/tools are reaching the FNIM communities

36. Placeholder for: Video / or Message & Photo: Alethea Kewayosh, Director, Aboriginal Cancer Control discussing one or more of the strategic priorities Move forward to begin the quiz for this chapter

37. Insert Quiz slide: Quizzes for Chapter 2 The quiz for this chapter has two questions. Q: Why is it so important that FNIM leaders, government and the health care system work together in support of Aboriginal health? A: __________________________________

38. Insert Quiz slide: Quiz for Chapter 2 True or False Q: Canada’s Inuit have the highest lung cancer rate in the world. A:  True  False

39. Chapter 3: Accomplishments and Future Direction

40. This chapter provides an overview of what has been accomplished to date on the ACS II, and what is on the horizon.

41. Accomplishments to Date Building regional capacity to engage FNIM people directly The roles of Aboriginal Cancer Lead and Aboriginal Patient Navigator are established in 10 of the 13 Regional Cancer Programs 10 RCPs are developing a regional FNIM Cancer Plan, in collaboration with the ACCU FNIM health networks within each region have been identified Meetings held with 11 core FNIM health tables in Northeast region to obtain guidance and input into the NE RCP Aboriginal Cancer Plan Starting to schedule FNIM core health table meetings in other regions Sustain the FNIM engagement process in each region Completed in 2013

42. Accomplishments to Date Increase CCOs understanding of the cancer burden on First Nations in Ontario Completed in 2013: Worked with the Sandy Lake First Nation community and its health care providers to: The ACCU partnered with the Chiefs of Ontario (COO) and the Institute for Clinical Evaluative Sciences (ICES) to: In 2014: Complete the analysis of the cancer burden on First Nations in Ontario. Generate a Screening Activity Report for the health care providers. Develop a greater understanding of the burden of cancer on First Nations in Ontario through an analysis of the Indian Registry System (IRS). Relationship Protocols to formalize the relationship between CCO and FNIM partners Completed in 2013: 2 Relationship Protocols signed In 2014: Relationship Protocols signed with all the FNIM partners

43. Future Developments Improve cancer screening and surveillance among FNIM communities Identification and assessment of FNIM identifiers and datasets for linkage with CCO data holdings to: Collaborate and support FNIM communities to build “Tobacco-wise Communities” A Lay Health Educator toolkit is being developed for FNIM patients and families to help their loved ones who might require palliative care and support at home The OCP IV and ACS III are in development for 2015-1018 Implement province-wide dissemination strategies Development of culturally appropriate cancer screening resources for FNIM people Move forward to begin the quiz for this chapter

44. Insert Quiz slide: Quiz for Chapter 3 This chapter has one short answer question. Q: What are the two new roles established in the Regional Cancer Programs? A: __________________________

45. Thank you for your participation in this course. Please click this linkto download and save, or print your course handouts. If you have any questions not addressed in this course or comments, please contact accu@cancercare.on.ca , we will respond within three business days.