Monday, February 28, 2022
Meet Filomena Servidio-Italiano, President and CEO of Colorectal Cancer Resource and Action Network (CCRAN). With her extensive experience in patient advocacy, especially in the colorectal cancer space, Filomena has been making a difference in the lives of cancer patients in Canada.
To highlight Colorectal Cancer Awareness Month, Pfizer Canada started a conversation about the needs of people living with the disease and the important work patient advocacy groups like CCRAN do for patients and caregivers. Here, we continue the discussion with Filomena to learn more about the organization and her leadership at CCRAN.
How did you first get involved with patient advocacy work?
My dad was diagnosed with widespread metastatic disease back in May of 2006 to which he succumbed very quickly, in less than three months. While he was going through the journey, I worked tirelessly to help him improve his outcomes. He passed before I could realize that goal for him. Upon his passing, I vowed to help others just like him in their quest to improve patient outcomes, and to evidence-based information that could empower them throughout their journey. It was one month after my father’s death that the Colorectal Cancer Resource & Action Network (CCRAN) was founded to help address the unmet needs of metastatic patients.
What are some ways CCRAN advocates for patients and caregivers?
CCRAN is a patient-focused organization. Our goal is to ensure patients are fully supported at all stages of their disease.
If invited, CCRAN will participate in patient-clinician consults to help ensure the patient can actively participate in the shared decision-making process in an informed manner.
Expert presentations and clinical research updates are brought to the attention of our metastatic population in the hopes that a thoughtful dialogue will ensue between the patient and treating oncologist.
We prepare thoughtful and compelling patient input submissions to inform the deliberations of the Health Technology Assessment expert committees in Canada who oversee funding recommendations when oncology drugs are under review.
CCRAN will host conferences and symposia to solicit public policy change through expert consensus statements/publications, such as the change in screening age we are currently attempting to lower in Canada.
We also collaborate with other organizations, universities, institutions to ensure the patient voice is heard and that patients’ values, preferences and priorities are incorporated into grants, studies, and trials.
What advice do you typically give to patients/caregivers to empower them in becoming effective self-advocates?
Self-advocacy is very important because as much as we hate to admit this, CCRAN cannot be everywhere at all times for everyone. Self-advocacy is part of what we like to refer to as ‘participatory medicine’ where patients are actively working alongside their clinicians to choose the appropriate therapy to treat their cancer. If I were to select the top three pieces of advice I typically lend to patients when first meeting them, I would have to say they would be:
Become well acquainted with your cancer and its treatments. Learn more about your colorectal cancer by visiting reliable websites that provide education, programs and services, as well as support for people with colorectal cancer and their caregivers. There are so many different treatment options available, so it’s important to have the knowledge to find the appropriate treatment. If the research is too arduous of a task, you may wish to rely on the services of a patient advocacy group such as CCRAN who supplies these research updates for you.
Have a support system in place. A colorectal cancer diagnosis can be overwhelming and difficult to navigate but far more bearable if you do it with others by your side who are willing to help. Consider bringing someone to your appointments to take notes while you are actively listening to the oncologist for example. And in anticipation of those doctors’ appointments, please be sure to write down the questions you wish to ask of your oncologist. As part of a broader support system, I would suggest joining a support group that focuses on your specific type of cancer: colorectal cancer. It often means the difference between tolerating and thriving.
Keep detailed medical records. Establishing an online file of medical records or a hard copy binder of results can help you keep track of your files. You aren’t always going to be with your care team. As a result, you can help yourself keep track of any concerns or thoughts you have between appointments by creating your own files.
For colorectal cancer resources and support, visit www.ccran.org . And learn more about biomarker testing here.