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: info@canceraction.ca

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

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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.