Survey
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
2015-2016 Annual Report Canadian Cancer Action Network ABOUT US 2012-2017 Strategic Priorities The Canadian Cancer Action Network is a not-for-profit incorporated organization representing the interests of all Canadians affected by cancer. Guided by a shared vision to have the best cancer system in place, and informed by 115 diverse pan-Canadian member organizations, CCAN strives to embed informed patient and caregiver perspectives in cancer control dialogue to help optimize patient outcomes across the cancer continuum. Universal, equitable and affordable access to quality care Financial and emotional burden of cancer faced by Canadians Input of cancer patient and caregiver perspectives to decision-making bodies across the cancer continuum Cultivation of a thriving network of cancer patient and caregiver spokespeople across Canada Strengthened organizational capacity We achieve this by: Leading integrated action in the patient and caregiver community Supporting the acceleration of Canada’s national cancer strategy Connecting the cancer patient and caregiver community to cancer control initiatives Promoting knowledge translation In This Issue Message from the Chair Message from the CEO CCAN Members List Recruitment Committee Report 2016 Membership Survey 2015-2016 Key Initiatives Jack Shapiro Lifetime Achievement Award Letter from the Auditor Financial Highlights COVER: PROVINCE OF ALBERTA, CANADA The 2015-2016 Canadian Cancer Action Network Annual Report cover photo was selected in memory of the late Tanny Jean Nadon, a respected leader and past member of the Canadian Cancer Action Network Board of Directors. A dedicated patient advocate, Tanny devoted countless hours on behalf of cancer patients in Alberta through her work with the Cross Cancer Institute and the Alberta Society of Melanoma, as well as at a national level with the Canadian Cancer Action Network. FAST FACTS 18% of CCAN members are regional or provincial agencies FAST FACTS 22% of CCAN members are national cancer organizations and/or patient advocacy groups Message from the Chair FAST FACTS It is my pleasure on behalf of the Board of Directors of the Canadian Cancer Action Network to invite you to review our 2015-2016 Annual Report. Our goal is to provide you with a comprehensive look at the important work undertaken by the organization over the past 12 months. As a patient-centered/membership driven organization our goal is to always embed a patient/caregiver perspective to the work we are contributing to the National Cancer Control Strategy. Thank you to our members and the many partner organizations who contributed substantially over the course of the past 12 months. The positive results of our work depend on engaging the perspective of those in the cancer community to move forward our shared agendas. My thanks to the Canadian Partnership Against Cancer for their continued support of the Canadian Cancer Action Network. Together, we are committed to the goals of the National Cancer Control Strategy for all Canadians. My thanks to the staff of the Canadian Cancer Action Network Secretariat whose dedication, passion and professionalism helps us to accomplish our mission on a daily basis. Finally, my thanks to Director Pam King who will be retiring from our Board of Directors this year. Pam and her group, CCAN Manitoba, have been instrumental in work on the Financial Impact of a Cancer Diagnosis – and it is their ground-breaking reports that inspired me to become involved with the Canadian Cancer Action Network. Lynette Hillier Chair, CCAN Board of Directors 23% of CCAN members are support and/or survivorship organizations FAST FACTS 22% of CCAN members are national associations FAST FACTS 16% of CCAN members are hospice and/or palliative end-of-life care facilities Message from the CEO As the Canadian Cancer Action Network celebrates our 15th year anniversary, a milestone in our progressive history as a recognized civil society network, it is my privilege to play a key leadership role as Chief Executive Officer. As a membership-driven, incorporated organization founded by a small core group of national cancer organizations, CCAN has a history of leading by example. We remain committed to working in collaboration with others to strategically identify the needs of those affected by a cancer diagnosis in Canada. As we pursue key priority areas that are both relevant and impactful to all Canadians, we strive to connect our members from across Canada to cancer control initiatives in order to significantly enhance dialogue and support integrated action. This is a remarkable undertaking for an organization that prides itself on ensuring each CCAN initiative actively engages our member organizations, partners and the broader cancer patient and caregiver community in the work. At CCAN, and as demonstrated throughout the 2015-2016 Annual Report, we are grounded in the belief that informed, involved Canadians are changing the way patient values and lived experiences are embedded in cancer control and healthcare dialogue. In leading by example, we believe it is critical to not only work together, side-by-side, but to provide opportunities for early input, continued engagement and important insight as our shared work progresses. As a result, CCAN adopted the principles of the International Association for Public Participation (IAP2) ensuring that every element of work is informed, shaped and further defined by those most impacted by the outcomes. In my role as CEO, I often refer to CCAN as an architect. I believe that our greatest strength as an organization is our ability to build relationships, and I know that our greatest asset is the strength, diversity and engagement of those we work with—valued members, partners, key stakeholders and patients and caregivers from across Canada. From our shared success in helping to coordinate multi-jurisdictional and multidisciplinary national dialogue with respect to family caregivers, to the innovative and ongoing initiative with the Canadian Agency for Drugs and Technologies in Health to introduce a Health Technology Assessment (HTA) Patient Engagement Navigator model in Canada to assist and support enhanced cancer patient community engagement in the HTA process, we are achieving meaningful and sustainable results. In closing, thank you to all those who support the Canadian Cancer Action Network and to our funder, the Canadian Partnership Against Cancer. Marjorie Morrison Chief Executive Officer FAST FACTS Since 2013, the CCAN membership increased by more than 320% 2016 Canadian Cancer Action Network (CCAN) Members Ac2orn (Advocacy for Canadian Childhood Oncology Research Network) Alberni Valley Hospice Society/Ty Watson House Alberta Caregivers Association Assembly of First Nations Assembly of Manitoba Chiefs (AMC) BC Hospice Palliative Care Association Bladder Cancer Canada Brain Tumour Foundation of Canada Breast Cancer Action Manitoba (BCAM) Breast Cancer Action Nova Scotia Breast Cancer Supportive Care Foundation British Columbia Childhood Cancer Parent’s Association Canadian Association of Nuclear Medicine Canadian Association of Occupational Therapists Canadian Association of Pathologists - Association canadienne des pathologists Canadian Association of Pharmacy in Oncology Canadian Association of Physicians for the Environment (CAPE) Canadian Association of Psychosocial Oncology (CAPO) Canadian Association of Medical Radiation Technologists Canadian Association of Radiologists Canadian Breast Cancer Network Canadian Breast Cancer Support Fund Canadian Cancer Society Canadian Cancer Society Manitoba Division Canadian Cancer Society New Brunswick Canadian Cancer Society Newfoundland & Labrador Canadian Cancer Society Nova Scotia Canadian Cancer Society Saskatchewan Canadian Cancer Survivor Network Canadian Foundation for Women's Health Canadian Hospice Palliative Care Association Canadian Immunohistochemistry Quality Control Canadian Liver Foundation Canadian Lung Association Canadian Organization for Rare Disorders Canadian Patient Safety Institute Canadian Partnership Against Cancer Canadian Skin Cancer Foundation Canadian Skin Patient Alliance Canadian Society of Palliative Care Physicians Canadian Urological Association Canadian Virtual Hospice Cancer Advocacy Coalition of Canada CancerBridges CancerChatCanada CancerFightClub Cancer Recovery Foundation of Canada Candlelighters Carcinoid-Neuroendocrine Tumour Society Caregivers Nova Scotia Association CCAN Manitoba Central Cariboo Hospice Palliative Care Society Childhood Cancer Foundation Candlelighters Canada Chronic Lymphocytic Leukemia Patient Advocacy Group (CLL PAG) Coalition Priorité de Cancer au Québec Colon Cancer Canada Colorectal Cancer Association of Canada cure: blood cancer de Souza Institute / Ontario Oncology Nursing Dr. Bob Kemp Hospice Dr. H. Bliss Murphy Cancer Care Foundation Fertile Future Georgian Bay Cancer Support Centre Gilda's Club Greater Toronto Helping Hands for Manitobans with Breast Cancer Inc Heart House Hospice HopeSpring Cancer Support Centre Hospice Calgary Hospice Dufferin Hospice King-Aurora Hospice Northwest Hospice Peterborough Hospice Richmond Hill Hospice Society of Greater Halifax Inuit Tapiriit Kanatami Kidney Cancer Canada Kids Cancer Care Foundation of Alberta Kids with Cancer Society Leukemia & Lymphoma Society of Canada Lung Cancer Canada Lymphoma Canada Myeloma Canada Melanoma Network of Canada Northern Cancer Foundation Nunavik Regional Board of Health and Social Services Ontario Institute for Cancer Research-HICT Program Ontario Parents Advocating for Children with Cancer Ontario Public Health Association Ottawa Regional Cancer Foundation's Maplesoft Centre for Cancer Survivorship Ovarian Cancer Awareness and Treatment in Saskatchewan OCATS Ovarian Cancer Canada Pacific Rim Hospice Society Pallium Canada Pancreatic Cancer Canada Patients' Association of Canada Pauktuutit Inuit Women of Canada Pilgrims Hospice Society Pink Pearl Foundation Prostate Cancer Centre Prostate Cancer Canada Rethink Breast Cancer Sarcoma Cancer Foundation of Canada Saskatchewan Breast Cancer Connect Save Your Skin Foundation Serenity House Hospice South Central Cancer Resource St. Joseph's Care Group The Canadian Centre for Applied Research in Cancer Control The Caregiver Network The Council on Aging of Ottawa Thyroid Cancer Canada VHA Home Healthcare Wellspring Calgary Willow Breast & Hereditary Cancer Support Young Adult Cancer Canada Recruitment Committee Report On April 25, 2016, the Canadian Cancer Action Network initiated the nomination and recruitment process to elect new members to the governing Board of Directors. Each year, the leadership team looks forward to welcoming new voices to the board table in order to help CCAN identify synergies, explore collaborative interests and define sustainable solutions to achieve measurable advancements in key priority areas. To fill three Director vacancies (each for a term of three years in office) and one existing vacancy (for a one year term) CCAN members were invited to nominate an individual from their organization through an online process. In keeping with our established governance practices, the process to select new Directors was guided internally by the 2016 Recruitment Committee comprised of: Robin Markowitz; Lynette Hillier and myself as Past-Chair of the CCAN Board of Directors. Following a comprehensive review and interview process, the 2016 Recruitment Committee proceeded to recommend three individuals to serve the three year terms to the current Board of Directors for consideration. With the support of the Board, and in compliance with the CCAN Bylaws, members were then asked to vote electronically to approve the slate as presented in order to officially close off the 2016 process. “Each year, the leadership team looks forward to welcoming new voices to the board table in order At this time, and on behalf of the 2016 Recruitment Committee as well as the Board of Directors and Secretariat, it is my pleasure as Committee Chair to welcome the following individuals to the CCAN governance team: Nicole Beben (Vice-President, Strategy, Canadian Partnership Against Cancer); Kathryn Downer (National Director, Pallium Canada); Martine Elias (Director, Access, Advocacy and Community Relations, Myeloma Canada) and Gabriel Miller (Director, Policy & Public Issues, Canadian Cancer Society, National Office.) to help CCAN identify synergies, explore collaborative interests and define sustainable solutions to achieve measurable advancements in key priority areas.” In closing, I would like to thank the CCAN membership as well as the nominators for your support and participation in the nomination and recruitment process this year. Jacquelin (Jackie) Holzman Chair, 2016 CCAN Recruitment Committee 2016-2017 BOARD OF DIRECTORS Robin Markowitz Lymphoma Canada (2 year term) Rebecca Anas Cancer Quality Council of Ontario Secretariat (2 year term) Louise Binder Canadian Cancer Survivor Network (1 year term) Gabriel Miller Canadian Cancer Society (3 year term) Dan Mornar (Vice-Chair) British Columbia Childhood Cancer Parents’ Association (1 year term) Kathryn Downer Pallium Canada (3 year term) EX-OFFICIO MEMBERS: Martine Elias Myeloma Canada (3 year term) Nicole Beben Canadian Partnership Against Cancer (1 year term) Lynette Hillier (Chair) Dr. H. Bliss Murphy Cancer Care Foundation (1 year term) Jacquelin (Jackie) Holzman Past-Chair, Board of Directors (1 year term) Ashley MacIsaac-Butler (Secretary-Treasurer) Rethink Breast Cancer (2 year term) Marjorie Morrison Chief Executive Officer Message from the Canadian Partnership Against Cancer Personal experiences and perspectives can shape the conversation and influence the cancer system in very fundamental ways. Several years ago, the Partnership undertook the challenge of embedding the patient perspective in all aspects of our work and today, we see progress. Our collective efforts are making a noticeable impact. As we shift our attention to the next phase of the Canadian Strategy for Cancer Control, we will continue to expand the breadth and depth of opportunities for patients and families to engage with the Partnership. We will continue to partner with the Canadian Cancer Action Network to guide and ensure strong engagement with patients and caregivers in the Strategy. And, we will make transformational efforts to design the system from the perspective of patients and their families under our strategic theme of ‘seamless patient experience’. Meeting the challenge of creating a cancer system that respects and responds to the needs and priorities of the people to whom this work matters most – patients and families – is central to driving change. Together, we will reach our goal and reduce the burden of cancer on Canadians. Shelly Jamieson Chief Executive Officer Canadian Partnership Against Cancer ABOUT THE PARTNERSHIP: The Canadian Partnership Against Cancer works with Canada’s cancer community to reduce the burden of cancer on Canadians. Grounded in and informed by the experiences of those affected by cancer, the organization works with partners to support multi-jurisdictional uptake of evidence that will help to optimize cancer control planning and drive improvements in quality of practice across Canada. Through sustained effort and a focus on the cancer continuum, the organization supports the work of the collective cancer community in achieving long-term population outcomes: reduced incidence of cancer, less likelihood of Canadians dying from cancer, and an enhanced quality of life for those affected by cancer. Enhanced collaboration leading to shared understanding: 2016 CCAN Members Survey In May of 2016, CCAN conducted an online survey of 115 CCAN member organizations from across Canada to seek patient and caregiver community insight in key priority areas of cancer control, as well as broader healthcare issues. The survey, led by CCAN and funded by the Canadian Partnership Against Cancer, presented a series of comprehensive questions reflecting general, pressing and emerging issues. The questions were developed in collaboration with our partners, the Canadian Agency for Drugs and Technologies in Health, pan-Canadian Oncology Drug Review; Canadian Association of Provincial Cancer Agencies; Canadian Medical Association; Canadian Partnership Against Cancer; Cancer Care Ontario and Carers Canada. The respondent rate for the national 2016 survey was 60%, an increase of 15% from a similar 2014 online questionnaire conducted by BRISC Management Group Inc. on behalf of CCAN. Of the 2016 survey respondents, more than 75% reported that they currently occupy a leadership, governance and/or policy position within their respective organizations. While the largest sector represented by respondents (43.5%) reflected a national cancer organization or patient advocacy group perspective, more than 30% reported their membership consisted of less than 100 members or constituents, indicating that grassroots and/or community-based organizations were well represented. 2016 SURVEY PARTNERS Project Lead: Canadian Cancer Action Network Canadian Agency for Drugs and Technologies in Health, pan-Canadian Oncology Drug Review Program Canadian Association of Provincial Cancer Agencies Canadian Medical Association Canadian Partnership Against Cancer Cancer Care Ontario Carers Canada 2016 SURVEY RESULTS Key findings Advocacy practices, equity of access to care and family caregiving are the key anticipated areas of focus for the majority of survey respondents in 2016 and 2017. Overall access to medication, treatment, care and support services is viewed as the most recognized health equity challenge, followed by the financial implications associated with a cancer diagnosis. The promotion of patient values and lived experiences, knowledge translation and integrated action to address issues impacting family caregivers in Canada, are the three most highly valued products and/or services associated with a CCAN membership. The majority of respondents believe gaps that impact the provision of effective respite care in Canada exist, influenced by such factors as limited resources, availability and accessibility. Smoking cessation is considered the highest cancer prevention factor by respondents, followed by environmental and occupational exposures to carcinogens. Patient care in a home setting is considered to be the most important priority for Canada’s aging population and seniors’ healthcare. 60% Survey respondent rate 2016 SURVEY RESULTS 43.5% Of respondents represented a cancer organization or patient advocacy group perspective 2016 SURVEY RESULTS 76.8% Of respondents reflected a leadership, policy or governance lens TO LEARN MORE: www.canceraction.ca 2016 SURVEY REULTS 56% “Developed in consultation with our national and provincial partners, the survey is one of a number of CCAN-driven engagement opportunities to help CCAN and our partners gain a shared understanding of patient and caregiver community perspectives on general, pressing and emerging issues in cancer control and healthcare in Canada.” MARJORIE MORRISON, CEO Of respondent organizations were located in Ontario Mobilizing Action: Family Caregivers in Canada ‘Mobilizing Action: Family Caregivers in Canada’ was a collaborative initiative funded by the Canadian Cancer Action Network in partnership with Carers Canada (also serving as the Project Secretariat for the duration of the two year project) and the Canadian Home Care Association. The collaborative project (April 2014 to March 2016) focused primarily on the development of an integrated action plan supported by the implementation of a shared model of engagement. In 2015-2016, four Mobilizing Action Teams comprised of stakeholders from across Canada were established to focus on four key areas: awareness, access, financial and supportive workplaces. FAST FACTS 2015-2016 KEY ACTIVITIES At the close of the two year collaborative project, ‘Mobilizing Action: Family Caregivers in Canada’ successfully engaged more than 60 diverse stakeholders from across Canada to inform the development of the ‘Mobilizing Action Integrated Action Plan,’ a blueprint for continued coordinated action. In 2015-2016, the project scope was further enhanced by the introduction of multijurisdictional / multi-disciplinary teams to advance key areas: (1) access (exploring technology enabled carers, Chaired by the Canadian Cancer Action Network CEO, Marjorie Morrison) (2) awareness (targeted advocacy) (3) financial (respite options for Canadians) and (4) workplace (engaging employers in dialogue.) 60+ Stakeholders from across Canada helped to inform the Mobilizing Action Integrated Action Plan NATIONAL STEERING COMMITTEE 3M Canadian Cancer Action Network CAREGIVER ADVISORY GROUP Canadian Home Care Association O. Beaudoin Canadian Human Rights Commission H. Hardy Canadian Partnership Against Cancer P. King Carers Canada (formerly Canadian Caregiver Coalition) B. Morgan Janssen Inc. L. Scott Mental Health Commission of Canada L. Taraba Saint Elizabeth SEIU Healthcare 2016 SURVEY RESULTS 41.7% Consider funding for patient care in a home setting as the most important area in terms of healthcare for Canada’s aging population Mobilizing Action Teams AWARENESS TEAM ACCESS TEAM FINANCIAL TEAM WORKPLACE TEAM Carers Canada 3M Alberta Caregiver Association Carers Canada Canadian Home Care Association Canadian Cancer Action Network Alberta Health Services Canadian Human Rights Commission Canadian Hospice Palliative Care Association CBI Health Group Canadian Home Care Association CBI Health Group CBI Health Group Mental Health Commission of Canada Canadian Home Care Association Canadian Nurses Association CareLink Advantage Care at Home Health Charities Coalition of Canada GE Healthcare Closing the Gap Janssen Inc. MS Society of Canada Parkinson Society Canada SEIU Healthcare H. Hardy Memorial University of Newfoundland—Centre for Nursing Studies Nursing and Homemakers Inc. Ontario Caregiver Coalition Philips Lifeline Canada PEI Health V. Cammack McMaster/CIHR Saint Elizabeth Vanier Institute University of Guelph (Dr. D. Lero) V. Cammack SEIU Healthcare L. Scott Carers Canada facilitated the collaboration and operational coordination of the Mobilizing Action Teams through the maintenance of the Mobilizing Action Secretariat. MOBILIZING ACTION: FAMILY CAREGIVERS IN CANADA PROGRESS REPORT MOSAIICC EXPERT PANEL AND WORKING GROUP Chair: Marjorie Morrison, Canadian Cancer Action Network Wendy Bell Laura Burnett, Canadian Cancer Society Chris Collins, Speaker of the New Brunswick Legislative Assembly Shannon Kroon, Cancer Recovery Foundation Suzanne McNeil, British Columbia Childhood Cancer Parents Association Ron Mitchell, Coast to Coast Against Cancer Foundation Dan Mornar, British Columbia Childhood Cancer Parents Association Andrew Nelson, Work for a Cure Antonia Palmer, Neuroblastoma Canada Phillipa Pictou, Department of Health, Pictou Landing First Nation Nancy Reynolds, Advisory Council, Mental Health Commission of Canada Michael Smith, Ontario Parents Advocating for Children with Cancer Susan (Sue) Turner, Turner & Associates James Thomson, Ontario Parents Advocating for Children with Cancer MOSAIICC Mobilizing Opportunities to Systematically Address 2015-2016 KEY ACTIVITIES In 2015, the MOSAIICC Advisory Committee transitioned into the MOSAIICC Working Group and Expert Panel, expanding the initial MOSAIICC team by more than 90%. Stemming from a series of five MOSAIICC Regional Think Tanks held across Canada in 2015, the MOSAIICC Working Group and Expert Panel focused on the conceptual and architectural design of a MOSAIICC Information Portal for future consideration. To support the longer term sustainability of the MOSAIICC initiative, the MOSAIICC Working Group and Expert Panel worked in collaboration to construct a conceptual framework for project governance, management and sustainability for future discussion. Issues Impacting Caregivers of Children (MOSAIICC) is a multi-jurisdictional, pan-Canadian initiative to identify, define and advance a series of recommendations specific to the needs and priority areas of family caregivers of children in Canada, namely: improved access to information, resources and financial support for families. Guided by the International Association for Public Participation (IAP2) Spectrum for Public Participation, and building on the outputs of a CCAN-driven 2013 consultative session to provide a greater shared understanding of the issues impacting families with children diagnosed with cancer, MOSAIICC is governed by a Working Group and Expert Panel comprised of family caregivers and parents, scientific experts and diverse civil society organizations. FAST FACTS 7% 2016 SURVEY RESULTS Of CCAN members focus exclusively on mandates associated with childhood cancer Consider the promotion of patient values and lived experiences to be the single most important value of the CCAN membership program 75.6% Canadian Cancer Action Network Stakeholder Recognition Award 2016 Recipient, Antonia Palmer The Canadian Cancer Action Network Stakeholder Recognition Award is presented each year to an individual who has demonstrated an outstanding commitment and unwavering dedication to collaboratively advance a particular CCAN-driven project, initiative or effort . The Board of Directors and CCAN Secretariat are pleased to announce the 2016 recipient of the Stakeholder Recognition Award, Antonia Palmer. The founder of Neuroblastoma Canada, and co-founder of the Advocacy for Canadian Childhood Oncology Research Network, Antonia experienced the impact of a childhood cancer diagnosis firsthand in 2009 when her two-year old son was diagnosed with stage IV Neuroblastoma. In 2015, Antonia joined the Canadian Cancer Action Network MOSAIICC team (Mobilizing Opportunities to Systematically Address Issues Impacting Caregivers of Children) and was instrumental in the conceptual design and architectural development of a proposed MOSAIICC information portal to support families caring for children with cancer. PREVIOUS STAKEHOLDER RECOGNITION AWARD RECIPIENTS 2015 Charles Bergeron, Canadian Medical Association Mona Sabharwal, pan-Canadian Oncology Drug Review, a program of the Canadian Agency for Drugs and Technologies in Health Helen Mai, pan-Canadian Oncology Drug Review, a program of the Canadian Agency for Drugs and Technologies in Health Health Technology Assessment 2015-2016 KEY ACTIVITIES LOOKING AHEAD: The Patient Engagement Collaboration Project is an ongoing collaboration between CCAN and the pan-Canadian Oncology Drug Review (pCODR), a program of the Canadian Agency for Drugs and Technologies in Health (CADTH). As a result of the collaborative efforts of the partners: Two new resources were produced to help strengthen patient advocacy group submission: ‘Strengthening your pCODR Submission: An Overview’ narrated by Marjorie Morrison and ‘Strengthening your pCODR Submission: Collecting and Presenting Information’ narrated by Mona Sabharwal. The Cancer Drug Information Pipeline for Patient Advocacy Groups, a central source of information on the anticipated cancer drug products/indications that could enter the Canadian market, that now lists approximately 380 drugs, was introduced as a publicly accessible tool to further support patient groups with longer lead times. A full-time Health Technology Assessment Patient Engagement Navigator position was introduced to further explore innovative ways to support and engage the cancer patient community in the health technology assessment process, and to assist the cancer patient community in navigating and understanding health technology assessment in Canada. October 2016: In collaboration with our project partner, an interactive workshop for patient groups will be hosted by CCAN highlighting the role of health technology assessment in cancer drug funding decisions in Canada. November 2016: CCAN will speak to the goals and short-term objectives of the Health Technology Assessment Patient Engagement Navigator project during the Canadian Expert Patients in Health Technology Conference hosted by CCAN member, the Canadian Organization for Rare Disorders. HEALTH TECHNOLOGY ASSESSMENT PATIENT ENGAGEMENT NAVIGATOR PROJECT ADVISORY TEAM and CONTENT EXPERTS Project Leads: Helen Mai, Marjorie Morrison Ken Bond, Alexandra (Alex) Chambers, Brent Fraser, Helen Mai Canadian Agency for Drugs and Technologies in Health, pan-Canadian Oncology Drug Review program Heather Logan (Content Expert) Canadian Association of Provincial Cancer Agencies Lynette Hillier, Marjorie Morrison, Adam Waiser Dr. James (Jim) Gowing (Content Expert) Canadian Cancer Action Network Kari Kerr Canadian Partnership Against Cancer Durhane Wong (Content Expert) Canadian Organization of Rare Disorders Robin Markowitz (Content Expert) Lymphoma Canada FAST FACTS 380 Cancer drugs are currently listed in the Cancer Drug Information Pipeline FAST FACTS FAST FACTS 78% FAST FACTS Of CCAN members are currently registered with the pan-Canadian Oncology Drug Review program Of registered patient advocacy groups are CCAN members Of the registered patient advocacy groups have been contacted by the Health Technology Assessment Patient Engagement Navigator in the past three months 23% 68% FAST FACTS 465+ Civil society organizations are registered members of the Organization of American States. In 2015, CCAN officially received civil society status from the Permanent Council of the Secretariat for Access to Rights and Equity. Global Engagement: Promoting our Work LOOKING AHEAD: 2015-2016 KEY ACTIVITIES CCAN highlighted our collaborative work in the area of caregivers of children with cancer by presenting the e-abstract, ‘Mobilizing Opportunities to Systematically Address Issues Impacting Caregivers of Children: A Multi-Sectoral Approach to Influence System Change in Canada’ during the 47th Congress of the International Society of Paediatric Oncology in Cape Town, South Africa. CCAN underwent a six-month application and review process, receiving approval in 2015 from the Permanent Council of the Organization of American States (OAS), Secretariat for Access to Rights and Equity (OAS Resolution CP/RES.759). CCAN was granted membership in OAS, achieving status as a Civil Society organization. CCAN provided a Canadian perspective to inform the report published in 2016 by Breast Cancer Now and Prostate Cancer UK, 'International Comparisons of Health Technology Assessment,' highlighting a review of drug systems and availability of treatments in England, Scotland and Wales in comparison to five similar countries, Germany, France, Australia, Canada and Sweden. November 2016: In consultation with the Canadian Agency for Drugs and Technologies in Health, panCanadian Oncology Drug Review program, and as an active member of the Union for International Cancer Control, CCAN will present an e-abstract, ‘Patient Engagement in Health Technology Assessment,’ during the 2016 UICC World Cancer Congress in Paris, France. National Engagement: Working with Others CCAN is pleased to work closely with others to help advance, support and contribute to initiatives and areas of shared interest to the cancer patient and caregiver community, including such stakeholders as: AGE-WELL National Research Network Aging Gracefully across Environments using Technology to Support Wellness, Engagement and Long Life University of British Columbia and Université de Montréal Canadian Agency for Drugs and Technologies in Health CADTH-Patient Liaison Forum Canadian Cancer Research Alliance Survey on Palliative and End-of-Life Care Research Canadian Hospice Palliative Care Association Advance Care Planning in Canada Goals of Care (toolkit) Canadian Partnership Against Cancer Pan-Canadian Quality Assurance Recommendations for Interpretive Pathology YourCancerStory Quality & Sustainability in Cancer Control: A System Performance Spotlight Report (press release) McGill University Priorities for caregiver research in cancer care: National and international perspectives using the Delphi procedure School of Nursing/Research Associate Centre, St. Mary’s Hospital Center McMaster Health Forum Merit Reviewer, Citizen Briefs: Making Fair and Sustainable Decisions about Funding for Cancer Drugs in Canada and Improving Pain and Symptom Management in Cancer Care in Ontario University of Ottawa International Psychosocial Oncology Society Fear of Cancer Recurrence Colloquium LOOKING AHEAD: November 2016: CCAN will host a conversational World Café In Toronto, ON with Canadian cancer patients, caregivers and interested citizens to discuss and explore issues pertaining to Canada’s aging population, screening for underserved populations and the application and sharing of cancer-related data. Jack Shapiro Lifetime Achievement Award 2016 Recipient, Deborah (Deb) Maskens Introduced in 2015, the Canadian Cancer Action Network Jack Shapiro Lifetime Achievement Award is the highest single recognition bestowed by the Board of Directors to an individual whose achievements and contributions to the cancer patient advocacy community demonstrate a unique, valuable and lasting impact on the Canadian cancer control landscape. The award, which recognizes the contribution of an individual through the gift of volunteerism rather than a single meaningful contribution, acknowledges an individual who exemplifies the spirit of collaboration, passion and standards of excellence in their commitment to advance patient issues in Canada. The Canadian Cancer Action Network and Mr. Jack Shapiro are extremely pleased to jointly announce the 2016 Canadian Cancer Action Network Jack Shapiro Lifetime Achievement Award recipient, Deborah (Deb) Maskens. As co-founder of Kidney Cancer Canada, Deborah Maskens has worked tirelessly as a patient advocate to ensure equal access to high quality care for kidney cancer patients across Canada on behalf of Kidney Cancer Canada, a national organization she co-founded, as well as the CanCertainty campaign, a united voice of more than 30 Canadian patient groups, cancer health charities, and caregiver organizations, working together to significantly improve the affordability and accessibility of oral take-home cancer medications in Ontario and Atlantic Canada. Recognized and respected by her colleagues both nationally and internationally, Deborah is instrumental in continuing to advance issues impacting cancer patients through her leadership and past involvement with a number of organizations including the Canadian Cancer Advocacy Coalition, the International Kidney Cancer Coalition (based in Amsterdam, The Netherlands) and to the Canadian Cancer Action Network as the inaugural Past-Chair of the Drug Review Working Group. In September 2015, Deborah was decorated by the Governor-General of Canada, awarded the highly prestigious Meritorious Service Medal. Part of the Canadian Honours System, this award recognizes individuals who have performed “an exceptional deed or activity over a limited period of time, which brought honour to their community or to Canada.” SPECIAL THANKS TO GUEST CONTRIBUTOR, DR. ROBIN MCGEE FOR PERMISSION TO USE PORTIONS OF THE CANCER KNOWLEDGE NETWORK BLOG, ’INTRODUCING REMARKABLE CANCER PATIENT ADVOCATE, DEB MASKENS, MSM.’ AUGUST 2016. https://cancerkn.com/introducing-remarkable-cancer-patient-advocate-deb-maskens-msm/ “Deborah Maskens is the ultimate patient "In my role as Chair and Past-Chair of CCAN, I advocate. The co-founder of Kidney have seen up close how effectively Deb Cancer Canada and CanCertainty, she is Maskens has worked on behalf of the kidney Canada’s leading patient voice for cancer community -- indeed, on behalf of the equitable drug funding. Her advocacy cancer community generally. She is widely story began with her own personal respected and her continuing efforts to health crisis. She was an active wife, significantly enhance meaningful patient mother, and businesswoman when she empowerment in Canada has earned her the was diagnosed at 36 with a rare stage IV lasting respect of her peers. I am pleased to renal cell carcinoma. Despite the agony present her with the 2016 Canadian Cancer of repeated recurrences of her own Action Network Jack Shapiro Lifetime disease, Deb Maskens teaches us that Achievement Award in recognition of her many even those in active treatment can still contributions, her strong leadership and an approach cancer advocacy with vision, unwavering commitment to see system change with verve, and with dignity.” occur for the benefit of all Canadians. Congratulations, Deb on this well-deserved recognition.” JACK SHAPIRO Past-Chair Canadian Cancer Action Network DR. ROBIN MCGEE Patient Advocacy Editor Cancer Knowledge Network Independent Auditor’s Report and Financial Highlights Financial highlights (year ended March 31, 2016) STATEMENT OF MEMBERS FUND GENERAL FUND 2016 TOTAL 2015 TOTAL $ $ $ $ - 342,390 342,390 453,118 345 - 345 69 - (43,571) (43,571) - 345 298,819 299,164 453,187 8,817 239,166 247,983 419,375 (8,472) 59,653 51,181 33,812 44,112 194,331 238,443 136,326 8,272 56,089 64,361 13,425 35,840 138,242 174,082 122,901 OPERATIONS SUMMARY Revenues (General Fund) Revenues (Members Fund) Returned funds Total revenues Total expenditures Excess of revenues over expenditures (expenditures over revenues) for year STATEMENT OF FINANCIAL POSITION Assets Liabilities Fund balance THE CANADIAN CANCER ACTION NETWORK FINANCIAL STATEMENTS MARCH 31, 2016 ARE AVAILABLE UPON REQUEST. CANADIAN CANCER ACTION NETWORK | 1 University Avenue, Suite 300, Toronto, ON | 416.619.5784 | www.ccanceraction.ca The production of this publication was made possible through a financial contribution from Health Canada, through the Canadian Partnership Against Cancer. The views expressed herein represent the views of the Canadian Cancer Action Network and do not necessarily represent the views of Health Canada.