ONGOING EFFORTS
Although we’ve accomplished a great deal over the years, the fact remains that while colorectal cancer (CRC) is preventable, it continues to be a leading cause of cancer death in Canada. Moreover, we are faced with new challenges, such as rising rates of CRC in young adults and keeping up to date on advancements in research and development.
Our various initiatives allow CCC to continue to advocate for the well-being of CRC patients and those at risk.
Introduction
Treating colorectal cancer (CRC) has evolved over the past few decades. In the past, all patients might have received the standard therapy used for all people with colorectal cancer. Today, people with colorectal cancer may have very different kinds of tumors at the cellular level. The use of biomarkers has helped to create a more personalized approach to cancer care that helps to guide healthcare providers to make more informed decisions on your treatment options.
There are many different types of treatments used to treat colorectal cancer: surgery, chemotherapy, radiation treatment and systemic treatment. One type of systemic treatment that has been noted to produce positive results in a select group of patients is immunotherapy, which essentially involves priming your natural immune defenses to recognize, target, and destroy cancer cells effectively.
The mission of Colorectal Cancer Canada’s Immunotherapy Program is to raise awareness and education on immunotherapy and advocate on behalf of colorectal cancer patients seeking access to it as a promising new cancer treatment. CCC is reaching out to the Canadian colorectal cancer patients to inform them of the benefits of immunotherapy as well as the side effects, clinical trials, and the need for funding to support immunotherapy research.
In order to ensure that the right patients receive the right treatment at the right time, CCC has a particular interest in ensuring that patients are able to receive timely biomarker testing so that appropriate treatment plans can be made in a timely manner.
To learn more about the Immunotherapy Program, read the brief here
Key Activities
- Launch of our first survey of CRC cancer patients regarding their experiences with diagnosis and treatment choice, access to immunotherapy, side effects and impact on quality of life
- Creation of educational materials on the comprehensive array of treatment options including immunotherapy
- Dialogue with national and international partners regarding approved drugs and advise for health policy change and innovation in access
- Profiling of patient life experiences while on immunotherapy to raise awareness and educate the public
- Creation of patient guide for patients on immunotherapy including what to expect in terms of side effects, quality of life and prognosis
- Social media campaign to inform the lay public of personalized medicine and immunotherapy in Canada
- Advocacy efforts to improve access and delivery of immunotherapy in Canada
CANADIAN CANCER CLINICAL TRIALS TRANSFORMATION INITIATIVE MODEL
A mere two to six percent of cancer patients are currently enrolled in cancer clinical trials in Canada. Often, trials cannot be completed due to poor recruitment of patients. The reasons for this are varied and CCC has taken a leadership role to address this problem in Canada through four annual conferences and our work in the adoption of the USA Duke/FDA Clinical Trials Transformation Initiative (CTTI). CCC has developed a Canadian patient group pathway model based on the CTTI model (the Pathway Model).
CANADIAN CANCER CLINICAL TRIALS STAKEHOLDER CHARTER
To address the implementation of the Pathway Model and with a view of increasing patient centricity in clinical trials, increasing knowledge of and participation in clinical trials, CCC has led a working group to develop a charter for stakeholder adoption. The Canadian Cancer Clinical Trials Stakeholder Charter calls for inclusion of patient groups in cancer clinical trials throughout the clinical trial continuum setting out five key tenets as principles to guide clinical trial stakeholders when engaging patient groups in their trials.
AISE INITIATIVE
The AISE Initiative creates and advocates for the Charter Implementation Plan among all stakeholders in the clinical trial continuum. The Initiative aims to create a methodology to facilitate the institution and continuous improvement of The Charter across all clinical trial continuum stakeholders, including Contract Research Organizations; Clinical Research Units; Government Institutions; Medical Researchers; Patients and Patient Groups; Cancer Networks; Pharmaceutical Companies; Regulatory Bodies (internal and external)
Please visit PACT Canada for further information.
Resources
Presentation at the Ontario Institute for Cancer Research (OICR) Translational Research Conference March 2021
Clinical Trials Transformation Initiative one-pager
Current Oncology publication 2021
Current Oncology publication 2018
Clinical Trials Conference 2020 recordings
Canadian Cancer Clinical Trials Stakeholder Charter
Rates of colorectal cancer are rising sharply among young and middle-aged individuals, while rates continue to decline in adults aged 55 and over. Since 2003, across Canada excluding Quebec, the incidence of colorectal cancer has been increasing at 2.84% and 2.26% annually for men and women under 50 years of age respectively.
Dismissal of symptoms and delayed diagnoses is witnessed across colorectal cancer patients of all ages with a slightly higher prevalence in early age onset adults. Although a multitude of factors can be responsible for the rise in early age onset colorectal cancer, leniency in diagnosis and care owing to their age is felt by many patients. Delayed diagnoses could lead to advancing of the cancer that eventually requires complex long-term therapies and yet may have poor prognoses.
Therefore, it is important to ensure patients receive the right care at the right time. Patients’ family practitioners are generally the first point of contact with the health care system to seek treatment for their symptoms. Sensitizing the family practitioners and primary health care providers to the red flag symptoms of colorectal cancer can help prevent dismissal of potential diagnoses. It is also as essential to have patients educated about these signs and symptoms to avoid late diagnoses.
To address the rising incidence of colorectal cancer in young individuals, Colorectal Cancer Canada has launched the “My Symptoms Matter Program” that aims to sensitize family practitioners and primary health care providers on early detection and evaluation of colorectal cancer signs and symptoms. The program is also directed to raise awareness among the public and educate them about self-identification of colorectal cancer symptoms and self- advocacy for care.
Key Activities
- Literature review to evaluate impact of delayed colorectal cancer diagnoses and summarize best practices and clinical guidelines
- Toolkit that aims to sensitize family practitioners and primary healthcare providers on the prevalence of colorectal cancer in early age onset adults as well as the detection of colorectal cancer signs and symptoms
- Toolkit that aims to educate the public/patients to self-identify symptoms of colorectal cancer in a timely manner and discuss them with their family practitioners to ensure correct examination and screening and possibly referral to a specialist
- Development of “Message to my future doctor” videos highlighting patient experiences with delayed cancer diagnoses
- Launch of survey to CRC cancer patients regarding their experiences with primary contact with family practitioner and eventual diagnosis
- Launch of survey for family practitioners regarding their first-hand experiences with detecting CRC cases and associated referrals
- Continuous social media campaign
- Fortify partnerships for best practices and improvements by connecting with other national and international organizations actively working on this program
Resources
My Symptoms Matter Program Colorectal Cancer Mythbuster Colorectal Cancer Symptoms Checklist
Last updated: March 2022
The Patient Group Pathway Model to Accessing Cancer Clinical Trials is a Colorectal Cancer Canada (CCC) initiative which aims to increase recruitment, participation and retention rates of cancer clinical trials within Canada. A consensus meeting and a working group meeting were hosted by CCC in 2017 and recommendations on increasing uptake were published in Current Oncology in 2018. In 2018, a conference regarding The Patient Group Pathway Model and Real World Evidence Conference was hosted to draft a Patient Charter for clinical trial stakeholders. In 2019, a two-day conference was organized to foster patient group partnerships among stakeholders who advocate for cancer clinical trials in Canada and the development of Real World Evidence to help reduce uncertainty in clinical trial results.
READ OURPUBLICATION
A Canadian Framework for Integrating the Patient Voice into the Cancer Clinical Trials Continuum
DownloadCurrent Oncology publication: Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter
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