Colorectal cancer is the third most commonly diagnosed cancer in Canada and nearly 50% of diagnoses are in late stages. The 5-year survival rate for those at Stage IV is less than 15%. While recent advances in molecular profiling have started to improve the way in which optimal treatments are matched to metastatic cancer patients of various disease sites, access to testing varies by provinces.
To address the unmet needs of metastatic colorectal cancer (mCRC) and other metastatic cancer patients across Canada, Colorectal Cancer Canada (CCC) is proposing the Get Personal Campaign to educate patients and inform health policy about molecular profiling for use with companion diagnostics to increase access to personalized healthcare and precision medicine based on a patient's specific genetic profile.
The mission of Colorectal Cancer Canada's Get Personal Campaign is to raise awareness and advocate for timely reflex biomarker testing to ensure the most appropriate personalized treatment plan is developed according to the genomic makeup of a patient's tumour and personal set of disease characteristics.
Colorectal Cancer Canada envisions a future in which metastatic cancer patients are aware of their molecular profiles and have access to personalized treatment plans which prolong or improve their quality of life.
- Survey Canadian cancer treatment centres to determine biomarker testing practices and available treatment options
- Publication of results coming soon
- Personalized medicines conference and working group to inform biomarker testing recommendations and cancer clinical trials
- Educational materials on the comprehensive array of health services and treatment options for cancer patients in Canada
- Survey of mCRC patients regarding their experience with diagnosis and access to biomarker testing, and identify patients’ knowledge and awareness of biomarker testing
- Social media campaign to raise awareness on the importance of biomarker testing that emphasizes the patient perspective
- Dialogue with national and international partners regarding available testing and treatment options
- Advocacy efforts to improve biomarker testing access across Canada
Global Colon Cancer Association Congress 2021 presentation
Precision Oncology News article
Video: Biomarker Testing – What Patients Need To Know
Infographic: Patient & Caregivers' Perspective on Molecular Profiling across Canada
Pamphlet: Hereditary Colorectal Cancer Syndromes, Biomarker Testing, Screening And Prevention
Poster: Environmental Scan of Molecular Profiling in Canada
Poster: Patients' and Caregivers' Perspective on Biomarker Testing Across Canada
Webinar: Lessons from the Field - Colorectal Cancer Canada's Get Personal Program
Discuss DPYD Testing With Your Doctor
Precision Medicine QA Colorectal Cancer Canada May 2022
Understanding Biomarker Testing with Dr. Sheffield
What is the difference between genetic and biomarker testing?
Rates of colorectal cancer are rising sharply among young and middle-aged individuals, while rates continue to decline in adults aged 55 and over. Young people are often diagnosed at a later stage because they aren’t getting screened and doctors don’t necessarily suspect cancer to develop at a young age.
The mission of Colorectal Cancer Canada’s (CCC) Never Too Young Program (N2Y) is to raise awareness and enhance patient support around early age onset colorectal cancer (EAO CRC) in Canada in order to decrease the number of young people diagnosed with advanced stage disease. N2Y is committed to spreading the message that young adults need to be screened earlier than age 50 if they have a family history of the disease or an associated hereditary syndrome.
N2Y envisions a future where no young person in Canada dies of colorectal cancer due to a lack of awareness, misinformation, testing delays or stigma. Young Canadians and healthcare providers will have the appropriate information to continue the fight against colorectal cancer with confidence and resilience.
The N2Y Program is dedicated to:
- Increasing Canadians' awareness and understanding of EAO CRC
- Health promotion and cancer prevention
- Patient-centricity and empowerment in education, support, and advocacy efforts
- Multidisciplinary approaches to address unique needs of young patients
- Utilizing evidence-based research and best practices
- Advocating for appropriate and effective screening practices to increase early detection of CRC at any age
- National and international partnerships for innovation and sustainability.
- Raising awareness among the general public through social media and blog posts
- Sensitizing the healthcare community regarding the increase in EAO CRC cases in Canada
- Development of an Early Age Onset Patient & Caregiver Experiences Survey & Report
- Development of a Patient Toolkit for newly diagnosed EAO CRC patients and caregivers
- Development of an Early Age Onset Centre of Excellence best practices model (fall 2021)
Every person who has been touched by cancer may have a different understanding of the word "survivorship". The Cope Thrive Survive (CTS) program refers to survivors as those living with, through and beyond cancer. The tools and resources from the program will not only address those with no evidence of disease (NED), but any patient or caregiver with the goal of getting back on their feet after a life-changing diagnosis of colorectal cancer.
The mission of the Cope Thrive Survive (CTS) program is to promote health by supporting colorectal cancer patients & caregivers while getting their lives back on track. The program aims to provide resources, information and advocate for patients & caregivers of all ages as they transition from active treatment into everyday life.
Colorectal Cancer Canada envisions Canada as a country where all colorectal cancer patients and their families are supported during and post-treatment, resulting in better quality of life from the time of diagnosis until the end of life.
The CTS Program aims to:
- Provide patient-centred and inclusive resources and information
- Increase access to patient support
- Advocate for healthy public policy around cancer survivorship care
- Serve as a trusted thought-leader in the survivorship sphere
- Creation of a “buddy system” peer support initiative
- Development of a Return To Work toolkit for employees and employers (summer 2021)
- Development of a national Colorectal Cancer Survivorship Care Plan
- Raising awareness regarding CCC’s Patient Support programs & initiatives through social media
- Addressing survivorship issues through blog posts
Strategic Plan Visual
Return To Work Toolkit For Caregivers
Return To Work Toolkit For Employers
Return To Work Toolkit For Employees
Sexual Health, Fertility And Dating During And After Cancer
Ready for the Next Round
Cancer screening and preventions through health lifestyles is integral to cancer control and prevention; however, due to the COVID-19 pandemic there have been interruptions in the provincial colorectal cancer screening programs resulting in significant reductions in cancer screening, testing and diagnosis, coupled with a reluctance of individuals to seek help when experiencing symptoms of colorectal cancer. It is predicted that this will lead to increased advanced adenomas which are harder to treat and ultimately increased mortality.
Follow up cancer care and clinical trials were also interrupted during the pandemic and a recent study by Canadian and UK researchers suggests that for every month that cancer treatment is delayed, mortality can increase by 10 per cent¹.
The mission of Colorectal Cancer Canada’s ‘Ready For The Next Round’ campaign is to raise awareness on the importance of uninterrupted colorectal cancer screening and treatment and to find strategies for strengthening health system resilience to respond to future system shocks in the delivery of cancer prevention and care.
Building resilience is not about bouncing back to the pre-Canadian system but about evolving into something better and stronger with much more preparedness.
Colorectal Cancer Canada envisions a future with a more resilient health care system that can undertake positive action taking into account the benefits and risks of both the general population and cancer patients and finding innovative solutions to ensure uninterrupted cancer prevention, screening and uninterrupted healthcare. Hanna TP, King WD, Thibodeau S, Jalink M, Paulin GA, Harvey-Jones E, et al. Mortality due to cancer treatment delay: systematic review and meta-analysis. BMJ. 2020;371:m4087.
- The creation of a consensus panel with the goal of reducing the backlog in screening, follow-up colonoscopies and diagnostic colonoscopies for colorectal cancer patients and providing recommendations and solutions to increase access
- The creation of a dashboard with live data on screening uptake and delays, wait times for colonoscopy, wait times for treatment. Surgery and chemotherapy etc.
- Database to determine unmet needs and positive actions occurring in Canadian provinces
- Structural/Institutional changes that would make a more resilient healthcare system
- Develop videos and other materials on the impact of COVID-19 on cancer
- Produce educational materials on the importance of colorectal cancer screening during the pandemic
- Launch a social media campaign involving conversations with clinicians to highlight the backlog and addressing potential solutions
- Dialogue with national and international organizations discussing current best practices and positive actions in healthcare systems
- Continue to pursue advocacy efforts to create a more resilient healthcare system in Canada
A series of four thought-leadership roundtables, each representing the views of four different stakeholder groups (patients, physicians, healthcare system leaders, and researchers), was hosted on September 20-23, 2021. The goal was to hear firsthand experiences, pinpoint current challenges, identify new opportunities and propose solutions across the cancer care continuum. The roundtable recordings are available on our Youtube channel for your viewing.
Ready For The Next Round - Thought Leadership Roundtable: Patient SessionWATCH HERE
Ready For The Next Round - Thought Leadership Roundtable: PhysiciansWATCH HERE
Ready For The Next Round - Thought Leadership Roundtable: ResearchWATCH HERE
Ready For The Next Round - Thought Leadership Roundtable: Healthcare SystemWATCH HERE
The Foods That Fight Cancer (FTFC) program
The Foods That Fight Cancer (FTFC) program educates Canadians about incorporating healthy, nutritional and fun choices into their daily diets, providing them with recipes that will assist them in making the right food choices in helping them to prevent colorectal cancer and other cancers as well. The anti-cancer properties contained in the recipes have the additional benefit of increasing the chances of surviving cancer in the long run.FOODS THAT FIGHT
Patient Values Project (PVP)
The Patient Values Project (PVP) aims to define patient values, and measure and assign a weight to patient values in cancer drug treatment to ensure Canadian patients are heard in the evaluation of cancer care and the reimbursement of cancer drugs by public agencies. These weights will be adopted by Canadian and international cancer patient groups to empower them to provide objective input regarding patient values and preferences to inform the Health Technology Assessment (HTA) deliberative process. The PVP will increase timely access to effective treatments, and allow for a more reasoned and balanced rationale in the assessment of new cancer drugs by the expert committees.
- Develop a definition of patient values and determine the appropriate metrics to measure these values
- Assign an appropriate weight to the measured values to form an expert HTA committee decision in drug evaluation
- Provide objective and quantifiable input concerning patient values based on validated research techniques
- Empower patient groups in their effort to provide research-based input to HTA authorities
- Increase timely access to effective treatments
- Allow for a more reasoned and balanced rationale in the assessment of new cancer drugs by the expert committees
Webinar: Do Patient Preferences Influence HTA Decisions?
Last updated: February 2023
Spotlight on Clinical Trials
Clinical trials are an essential step to advancing cancer research, providing the means for collecting evidence on novel ways of detecting, preventing, diagnosing and treating cancer. However, only a small percentage of patients participate in clinical trials due to barriers that make their participation difficult and sometimes impossible. An important barrier to participation in clinical trials is the lack of patient knowledge and awareness at the appropriate time in the cancer trajectory.
- Educate and inform patients about cancer clinical trials (starting the conversation about clinical trials, how to access them, what does participation look like, what are the benefits/downsides)
- Increase awareness and access to colorectal cancer clinical trials by providing a basic patient navigation service and facilitating partnerships with provincial navigation services, whenever possible.
- Creation of a Tush Talks mini-series (3 episodes) dedicated to providing an overview of clinical trials (structure, design, outcomes) and patient testimonials of clinical trial experiences
- Social media campaign to break down myths and raise awareness of the facts about clinical trials
- Bi-monthly blogposts to promote awareness of active and recruiting clinical trials relevant to cancer patients in Canada
- Provide a basic clinical trial navigation service with the objective of assisting patients throughout their research and helping to determine the most appropriate trials to share with their treatment team. When available, these searches will be carried out in collaboration with navigation services external to CCC.