Download Annual Report - Canadian Cancer Action Network

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.