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Annual Report 2016-2017
Canadian Cancer Action Network Engagement. Collaboration. Integrated Action.
ABOUT US
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 patient and caregiver perspectives in
cancer control dialogue to help optimize patient outcomes
and improve the experiences of patients and caregivers/
carers across the cancer continuum.
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.
KEY PRIORITIES
Universal, equitable and affordable access to quality
care.
Financial and emotional burden of cancer faced by
Canadians.
Input of cancer patient and caregiver/carer
perspectives to decision-making bodies across the
cancer continuum.
Cultivation of a thriving network of cancer patient and
caregiver/carer spokespeople across Canada.
Strengthened organizational capacity.
TABLE OF CONTENTS
Message from the Chair and CEO
Message from the Canadian Partnership
Against Cancer
Collaboration
Engagement
Integrated Action
Jack Shapiro Lifetime Achievement Award
Membership Directory
Letter from the Auditor and Financial
Highlights
Social Media
Acknowledgements
Canadian Cancer Action Network, 1 University Avenue, Suite 300, Toronto, ON M5J 2Y6
416.619.5784 / 1.866.378.1986
www.ccanceraction.ca
Message from the Chair and CEO
Engagement. Collaboration. Integrated Action.
On behalf of the Canadian Cancer Action Network (CCAN) Board of Directors and Secretariat, we are pleased to
present the 2016-2017 Annual Report.
During the past several years, CCAN has embraced a virtual model to help us communicate more effectively with
our 115 diverse patient-centric member organizations from across Canada. By working in close collaboration with
our healthcare partners and actively engaging CCAN members, our resolve to embed informed patient and
caregiver (also referred to as carer) perspectives to Canada’s cancer strategy remains as strong as ever.
In keeping with the theme of engagement, collaboration and integrated action this past year, we wish to
acknowledge with gratitude the vital role of engaged patients and caregivers in cancer control dialogue. With
continued financial support from the Canadian Partnership Against Cancer, we remain committed to exploring
opportunities to better position the patient and caregiver community as engaged partners in early cancer control,
and broader healthcare discussions and decision-making.
As we reflect on our core activities this past year, we are mindful that meaningful, multi-jurisdictional collaboration is
fundamental to each initiative we lead. Supported by an internal leadership and innovation blueprint, we look
forward to continued organizational growth and long-term sustainability. To support this collective commitment, the
governing Board of Directors and Secretariat are firmly focused on expanding our outreach, strengthening existing
partnerships and identifying new and exciting areas of synergy to advance the interests of patients and caregivers
across the cancer continuum.
Founded in 2001 by more than ten national cancer organizations, CCAN has long believed that in order to support
integrated action, it is imperative that we work in collaboration with patient-centric groups and system leaders to
achieve optimal cancer patient outcomes and improved patient experiences for all Canadians. This core philosophy
dates back to our formative years and helps to frame how we, as stewards of the organization, work toward
reaching shared goals, greater results and sustainable advancements.
In closing, we wish to sincerely thank the CCAN Board of Directors for the gift of their leadership. We also wish to
extend our appreciation to the Canadian Partnership Against Cancer for their financial support, and to recognize our
many committee members, advisors and project partners who contribute greatly to our shared successes.
Lynette Hillier Chair, Board of Directors
Marjorie Morrison Chief Executive Officer
115 member organizations across Canada
Hospice/Palliative End-of-Life Care Members
15%
National Association Members
23%
National Cancer Association Members
21%
Regional/Provincial Members
22%
Support/Survivorship Members
19%
CC
AN
Message from the Canadian Partnership Against Cancer
As the new CEO of the Canadian Partnership Against Cancer I would like to acknowledge the invaluable role
of partners like CCAN, in working together to advance the Canadian Strategy for Cancer Control. I have great
respect for the role of CCAN and its members to improve the healthcare experience and outcomes for those
affected by cancer across the cancer continuum.
This year the Partnership started on a new chapter. Our 2017-2022 strategic plan We See Progress sets out
the priorities for the Partnership in the next five years as we continue to focus on Canada achieving better
outcomes for cancer patients. These priorities reflect the collective wisdom for urgent change collected from
extensive consultation with our many partners including our Patient and Family Advisors – the people to whom
this work matters most. The plan builds on the collaborative approach of our work and outlines themes—
quality, equity, seamless patient experience, maximize data impact and sustainable system—to anchor the
next five years of action on cancer. Bringing this plan to life will mean looking beyond conventional models and
approaches and finding areas of alignment with key partners across all parts of Canada with the diversity of
peoples that reflects. It will involve targeting the areas and opportunities that have the potential for greatest
impact, such as better screening for underserved populations, collecting and using big data to answer key
cancer control questions and providing tools and systems that will support more effective decision-making at
the front line to improve cancer care.
As we begin the next phase of delivering the Canadian Strategy for Cancer Control, with your active
engagement, we will expand the opportunities for patients and families to engage with the Partnership. We will
make transformational efforts with partners across the country to rethink the cancer care system’s design and
delivery from the perspective of patients and their families. As a cancer survivor, I know that our healthcare
system is capable of providing good quality, empathetic care built around the patient, which is key to restoring
both body and mind. It is our shared goal to ensure that all patients receive the full benefit of Canada’s cancer
care system performing at its best both -- consistently and pervasively.
I look forward to working with CCAN and its 115-strong membership base to learn more about your important
advocacy work representing the interests of all Canadians affected by cancer and how the Partnership may be
a good partner to your work; across cancer agencies, patient advocacy, survivorship organizations, national
disease organizations, and palliative end-of-life facilities.
And as always, evidence will drive our efforts and everything we do will focus on delivering meaningful results
for those affected by cancer. Together, we will achieve our 30-year goals.
Cindy Morton Chief Executive Officer
Collaboration: Health Technology Assessment
CORE OBJECTIVE:
Enhance patient group involvement and promote knowledge translation of the
health technology assessment process for oncology drugs in Canada.
Key activities:
The Heath Technology Assessment Patient Navigator Project (2016-2017)
culminated in a poster abstract highlighting the HTA Logic Model and key
project deliverables during the Canadian Partnership Against Cancer
conference, Innovative Approaches to Optimal Cancer Care in Canada.
In collaboration with the Canadian Agency for Drugs and Technologies in
Health (CADTH), and the pan-Canadian Oncology Drug Review program
(pCODR), designed and introduced a new searchable function to the online
Cancer Drug Information Pipeline for Patient Groups found on the CCAN
website.
Established a multi-stakeholder Health Technology Assessment Project
Advisory Committee and Content Expert Team in 2016 to inform the design
and development of key health technology assessment tools and initiatives.
Engaged the Canadian Centre for Applied Research in Cancer Control and
CADTH/pCODR in design dialogue in 2017, leading to the development and
launch of a post-evidence submission survey for patient groups participating
in the health technology assessment process for oncology drugs to help
assess understanding and satisfaction with the process.
Launched in 2015, the Cancer Drug Information Pipeline for Patient Groups is a centralized
online source of information for patient groups in Canada to help identify potential new
oncology drug products or indications that might be submitted to CADTH’s pan-Canadian
Oncology Drug Review program. Hosted on the CCAN website, the publically accessible
Pipeline provides earlier access to information for patient groups who intend to develop a
patient submission to the pCODR program.
96% of patient submissions
to the pCODR program included patient input
Key activities:
Co-hosted a multi-stakeholder panel presentation and patient group
information workshop with CADTH/PCODR entitled, ‘Role of Health
Technology Assessment in Cancer Funding Decisions’ featuring a case
study to explore how to apply a deliberative framework to cancer drug
funding recommendations in Canada.
Developed a comprehensive Health Technology Assessment Evaluation
Framework to further examine the impact of patient group involvement
in the decision-making process for oncology drugs in Canada in
partnership with the Canadian Centre for Applied Research in Cancer
Control (ARCC) and CADTH/pCODR.
Presented the e-poster abstract, ’Improving Patient Outcomes: How
Patient Engagement Systematically Informs a Uniquely Canadian HTA
System’ during the 2016 Union for International Cancer Control (UICC)
Congress held in Paris, France.
Provided continued insight and expertise to the Canadian Agency for
Drugs and Technologies in Health, Patient Liaison Forum.
“The enhanced pipeline addresses the need expressed by
patient groups to have more notification to develop
high-quality submissions. In the rapidly changing
landscape of cancer therapies, the enhanced pipeline’s
myriad pathways, well-organized data, and monthly
updates will greatly aid patient groups with the lead time to
provide patient values in the health technology assessment
process.”
Robin Markowitz, CEO
Lymphoma Canada
"Canadians are often not included in clinical trials for rare
cancer therapies, so the Cancer Drug Information Pipeline
for Patient Groups may, in some instances, serve as the
first source for learning about promising new therapies.
We are extremely excited about this new searchable
database and anticipate it will be a frequently used
resource."
Durhane Wong-Rieger, President and CEO
Canadian Organization for Rare Disorders
Engagement: Cancer Conversations that Matter TM
CORE OBJECTIVES:
Engage patients and caregivers from across Canada.
Improve patient and caregiver engagement in cancer control.
Embed lived experiences and patient-based values to Canada’s cancer strategy.
Key activities:
Hosted the first Cancer Conversation that Matter TM event to explore screening for low-income and
underserved populations, cancer data and Canada’s aging population with 36 participants from across
Canada. In 2017, produced a detailed report providing the Canadian Partnership Against Cancer with
an overview of key barriers as identified by participants, as well as opportunities for further
exploration.
Developed and implemented a CCAN Deliberative Engagement Framework and Process Map to
further strengthen CCAN engagement practices, and help to better position patients and caregivers as
informed partners in cancer control.
Worked with key stakeholders to further identify supportive tools and resources in order to help
promote broader patient and caregiver community participation.
Explored alignment and opportunities for further collaboration in shared areas of interest during a
facilitated 2016 workshop hosted by the Canadian Partnership Against Cancer.
Introduced in 2016, Cancer Conversations that Matter TM is a CCAN initiative to increase public participation and further
enhance cancer patient and caregiver involvement in dialogue in order to address key topics or emerging cancer control
issues impacting Canadians today. The primary goal of Cancer Conversations that Matter TM is to explore opportunities
to involve Canadians by providing an environment where cancer patients, caregivers and system leaders can explore
patient-centric issues, candidly discuss and address key challenges, provide patient or caregiver insight and examine
practical solutions to further improve cancer patient experiences and outcomes.
50% Are between
the ages 45-65
2M+ Canadians can live
safely in their homes thanks to the support
of caregivers
Integrated Action: Advancing Collective Priorities
8.1M Canadians are
caregivers
CORE OBJECTIVES:
Explore legislation, policy and programs that address universal priorities as defined in the
2016 report, Mobilizing Action: Family Caregivers in Canada.
Research and identify existing jurisdictional caregiver/carer programs.
Profile caregiver/carer support services implemented by provincial cancer agencies for
those affected by a cancer diagnosis.
Key activities:
In partnership with the Canadian Home Care Association (CHCA) and Carers
Canada, conducted a pan-Canadian support and program scan in 2016-2017 to
further explore key priorities such as: the health and well being of Canadian
caregivers/carers; financial burden; access to support services and care resources,
flexible workplaces that respect caregiving obligations and research as a foundation
for evidence-informed decision making.
In 2017, produced the report, ‘Advancing Collective Priorities: A Canadian Carer
Strategy’ in order to highlight Canada’s progress in the areas of legislation, policy and
programs.
Highlighted the policies and practices currently supporting Canadians caregivers by:
disseminating key findings to 115 CCAN member organizations; promoting key
messages in a national press release with CHCA and Carers Canada; sharing broadly
via social media channels and working with the Canadian Partnership Against Cancer
to feature the report in their e-publication, In Brief.
Advancing Collective Priorities: A Canadian Carer Strategy is a 2017 pan-Canadian report
produced by the Canadian Cancer Action Network and our partners, Carers Canada and the
Canadian Home Care Association. The report, available in English and French, highlights the
progress and existing gaps in support services and programs across Canada. Building on the multi-
jurisdictional momentum of Mobilizing Action: Family Caregivers in Canada, a collaborative effort in
2014-2016 to develop a national action plan to advance four key priority areas, the report identified
opportunities for broader pan-Canadian collaboration to achieve measurable outcomes and shared
values.
Canadian Cancer Action Network Jack Shapiro Lifetime Achievement Award
2017 Recipient, Jackie Manthorne
The Canadian Cancer Action Network Jack Shapiro Lifetime Achievement Award is
the highest single recognition bestowed by the acting 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, named after Past-Chair of the CCAN Board of Directors, Jack Shapiro,
recognizes the contribution of an individual through the gift of volunteerism. Rather
than a single meaningful contribution, the award acknowledges an individual who
exemplifies the spirit of collaboration, passion and standards of excellence in their
commitment to advance patient issues in Canada.
This year, the Canadian Cancer Action Network Board of Directors is pleased to
announce the 2017 Canadian Cancer Action Network Jack Shapiro Lifetime
Achievement Award recipient, Jackie Manthorne.
Over the past twenty years Ms. Manthorne has demonstrated significant and
meaningful contributions to the advancement of issues affecting cancer patients and
their families across Canada. As the President and CEO of the Canadian Cancer
Survivor Network, Ms. Manthorne guides a national network of patients,
families, survivors, friends, community partners and sponsors who strive to achieve
the very best standard of care, support, follow-up and quality of life. With her
dedication and leadership, the Canadian Cancer Survivor Network continues to
address the needs of cancer patients, survivors and caregivers across Canada.
Jack Shapiro Past-Chair, CCAN
Jackie Manthorne President & CEO
Canadian Cancer Survivor Network
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 Medical Radiation Technologists 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 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 CancerFightClub Cancer Recovery Foundation of Canada Candlelighters Childhood Cancer Support Centres Carcinoid-Neuroendocrine Tumour Society CCAN Manitoba Central Cariboo Hospice Palliative Care Society Childhood Cancer Canada Foundation
Chronic Lymphocytic Leukemia Patient Advocacy Group (CLL PAG) Coalition Priorité de Cancer au Québec Colorectal Cancer Association of Canada Craig’s Cause Pancreatic Cancer Society cure: blood cancer de Souza Institute / Ontario Oncology Nursing Dense Breasts Canada Dr. Bob Kemp Hospice Dr. H. Bliss Murphy Cancer Care Foundation Family Caregivers of British Columbia 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 and Richmond Hill Hospice Northwest Hospice Peterborough 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 Foundation Canada Myeloma Canada - Myélome Canada Melanoma Network of Canada Nanny Angel Network 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 OutCare Foundation Ovarian Cancer Awareness and Treatment in Saskatchewan 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
CCAN Membership Directory
Sarcoma Cancer Foundation of Canada Saskatchewan Breast Cancer Connect Save Your Skin Foundation Serenity House Hospice Shine Through the Rain Foundation 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 Williams Lake Hospice Society Young Adult Cancer Canada
Independent Auditor's Report
Financial Highlights (Year Ended March 31, 2017)
MEMBERS
FUND
GENERAL
FUND
2017 TOTAL 2016 TOTAL
STATEMENT OF OPERATIONS SUMMARY $ $ $ $
Canadian Partnership Against Cancer Corporation Funding 31,500 285,412 316,912 342,390
Interest Income 704 86 790 345
Returned funds to Canadian Partnership Against Cancer
Corporation
- (2,671) (2,671) (43,751)
Total revenues 32,204 282,827 315,031 299,164
Total expenditures 13,013 362,050 375,063 247,983
Excess of revenues over expenditures (expenditures over
revenues) for year
19,191 (79,223) (60,032) 51,181
STATEMENT OF FINANCIAL POSITION
Assets 116,184 17,884 134,068 238,443
Liabilities 11,153 8,865 20,018 64,361
Fund balance 105,031 9,019 114,05 174,082
Total liabilities and fund balances 116,184 17,884 134,068 238,443
THE COMPLETE CANADIAN CANCER
ACTION NETWORK FINANCIAL
STATEMENTS MARCH 31, 2017 ARE
AVAILABLE UPON REQUEST. PLEASE
CONTACT: [email protected]
70,783 Twitter impressions
in 8-months
962 followers on
social media platforms
6,534 total page visits
in 8-months
78% of CCAN Twitter followers reside
in Canada
FOLLOW US ON TWITTER: @canceractionnet
FOLLOW US ON INSTAGRAM: ccancanada
FOLLOW US ON FACEBOOK: Canadian Cancer Action Network
STAY TUNED TO CANCER CONVERSATIONS THAT MATTER TM
EVENTS: #CCTMatter
JOIN THE E-DISTRIBUTION LIST TO STAY INFORMED
SIGN UP FOR CCAN WEEKLY E-BLAST, CONNECTIONS
Social Media
Partnerships and Collaborations
CCAN is pleased to work closely with others to advance and/or contribute to shared
areas of interest. Currently, we are pleased to work with:
AGE-WELL National Research Network. Aging Gracefully across Environments using
Technology to Support Wellness, Engagement and Long Life. University of British
Columbia and Universite de Montreal
BioCan RX. Cancer Stakeholder Alliance Member
Canadian Agency for Drugs and Technologies in Health. Patient Liason Forum; Cancer Drug Information Pipeline
Canadian Centre for Applied Research in Cancer Control. Health Technology
Assessment project
Canadian Home Care Association and Carers Canada. Advancing Collective
Priorities: A Canadian Carer Strategy
Canadian Partnership Against Cancer. Cancer Conversations that Matter TM ;
Health Technology Assessment
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
The College of Family Physicians of Canada and Choosing Wisely Canada. Choosing Wisely “Safe Zones’ survey
Board of Directors (2017-2018)
Rebecca Anas
Nicole Beben, Canadian Partnership Against Cancer (Ex-officio)
Nicole Culos-Reed, Canadian Association of Psychosocial Oncology
Kathryn Downer, Pallium Canada
Martine Elias, Myeloma Canada
Kelly Grover, Ovarian Cancer Society
Lynette Hillier, Dr. H. Bliss Murphy Cancer Care Foundation (Chair)
Ashley MacIsaac Butler
Robin Markowitz, Lymphoma Canada
Kelly Masotti, Canadian Cancer Society
Marjorie Morrison, Canadian Cancer Action Network (Ex-officio)
Outgoing Directors (Term ending September 2017)
Dan Mornar, British Columbia Childhood Cancer Parents Association
Louise Binder, Save Your Skin Foundation
Jacquelin (Jackie) Holzman, Past-Chair
Health Technology Assessment Advisory and
Content Expert Committee
Ken Bond, Alexandra Chambers, Brent Fraser, Helen Mai
Canadian Agency for Drugs and Technologies in Health,
pan-Canadian Oncology Drug Review Program
Lynette Hillier, James (Jim) Gowing, Marjorie Morrison Canadian Cancer Action Network
Kari Kerr, Anila Sunnak
Canadian Partnership Against Cancer
Durhane Wong-Rieger
Canadian Organization of Rare Disorders
Robin Markowitz
Lymphoma Canada
Heather Logan (Observer) Canadian Association of Provincial Cancer Agencies
Cancer Conversations that Matter TM Atlantic Canada Advisory
Committee (2017)
Melissa Combs
Lynette Hillier
Bonnie Lee (observer)
Robin McGee
Marjorie Morrison
Sharon MacNeill
Anila Sunnak
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.