The Power of Advocacy: Showcasing Lived and Living Experience on the Global Stage
People with lived and living experience (PWLLE) are at the heart of cancer research, keeping all of us motivated. From experiencing a cancer diagnosis to navigating the complex cancer care system to caring for a loved one with cancer and everything in between, being touched by cancer is a life-changing experience. As cancer continues to be among the leading causes of death worldwide, meaningful participation of PWLLE is critical to shaping and delivering transformative and impactful research. These voices make significant contributions to advancing research, including offering unique perspectives, advocating in policy and research spaces, propelling innovation and collaboration, providing ethical oversight, promoting knowledge mobilization activities and more.
Recognizing the increasing significance of involving individuals with lived and living experience in research, the Institute of Cancer Research (ICR) strives to deepen its engagement within research and the broader cancer research community. To support this goal, ICR co-sponsors Patient Advocates from Canada to participate in the American Association for Cancer Research (AACR) Scientist↔Survivor Program (SSP) and Annual AACR Meeting, the world's largest international cancer research conference. The AACR-SSP enables Patient Advocates to build connections with researchers, health professionals, and other advocates through opportunities to learn together and share experiences.
This year, the Institute was delighted to co-sponsor Clare Cruickshank, Don Desserud and Don Wood to attend the AACR-SSP and Annual Meeting in San Diego, California.
Clare Cruickshank
"The best part of being an advocate is the people I get to meet and work with. There's a lot of passion and dedication to finding solutions and it's infectious."
After participating in Ontario's Breast Screening Program in 2018, Clare was diagnosed with an invasive mucinous breast cancer. She began her advocacy in 2020 after becoming a patient advisor at Cancer Care Ontario (Ontario Health). Although there were many patient voices around the table, no one appeared to be representing her experiences. Assuming this would be the case in other organizations, she was motivated to seek more opportunities to get involved and represent underrepresented voices.
She became a grant reviewer at the Canadian Cancer Society (CCS) and joined the Patient Advisory Committee for a research team that was examining ways to improve the management and treatment of cancer side effects. In 2021, she joined the Patient Expertise in Research Collaboration (PERC) Advisory Board. At PERC, she helped educate trainees about patient engagement and reviewed poster abstracts for Trillium's Primary Health Care Research Day.
She was also recently appointed as a member of the CCS Advisory Council on Research, where she helps provide important guidance and recommendations for CCS' research programs, priorities and policies. What continually motivates Clare is her vision to make cancer research more inclusive and to improve quality of life for all.
Clare found her experience at AACR rewarding and educational. She gained a better understanding of the challenges that cancer researchers experience. At the same time, she was able to connect with the vast community of Patient Advocates at AACR, who were equally generous in sharing their knowledge, perspectives and experiences. One of Clare's key takeaways from AACR was the importance of diversity on a research team or in an organization when meaningfully engaging diverse patients. Does the team or staff look like the people you want to recruit?
Don Desserud
"I hope that our presence at conferences like AACR inspires researchers to keep up their hard work. Without amazing scientists, many of us – most of us – would not be here. If I could say just one thing to a cancer researcher, it would be this: 'Because of you, we live.'"
In October 2015, Don was diagnosed with non-Hodgkin lymphoma. Following six months of chemotherapy, he was declared cancer-free in April 2016. Soon after, he was approached by Health Prince Edward Island (Health PEI) to serve as a patient representative on its Cancer Strategy Coordination Committee. This opportunity led to other invitations, including joining the Canadian Partnership Against Cancer's (CPAC) Quality Assurance Committee and attending the 2019 Canadian Cancer Research Conference (CCRC) in Ottawa.
Attending the CCRC in 2019 was a game-changing experience for Don as it exposed him to the groundbreaking advancements happening across the Canadian cancer research landscape. From there, Don was invited to join the Canadian Cancer Research Alliance (CCRA) Advisory Board and took on an active role in the CCRA Patient Involvement in Research Program (PIP). In 2021 and 2023, he was an organizer for the PIP Program, which occurs in conjunction with the biennial CCRC.
As part of his participation at AACR, Don gave a poster presentation on physician-patient education. His experience and learnings about all of the exceptional cancer research happening across the world confirmed his hope that cancer can indeed be beaten. Of equal inspiration was the bravery and fortitude of his fellow Patient Advocates, recognizing the psychological and emotional traumas some Advocates experience reliving their cancer experiences. All of the Patient Advocates he met were dedicated to making life better for their peers, and helping scientists and healthcare providers understand what it means to experience cancer.
Don Wood
"The best part of advocacy work in oncology is giving back and learning from other advocates that I have been so fortunate to collaborate with. I conclude every presentation or session with 'For those who come after us.'"
Don's advocacy journey began in 2017 when his now late wife, Sherry, was diagnosed with stage 4 colorectal cancer. Since then, Don has been an active contributor to patient engagement activities. He holds a longstanding position on the Patient and Family Advisory Council at the Tom Baker Cancer Centre in Calgary, Alberta. He also now serves as the Chair of the Patient Representative Advisory Committee at the Canadian Cancer Clinical Trials Group (3CTN).
For the last several years, Don has been a Lead Patient/Survivor/Caregiver Reviewer for the Canadian Cancer Society, contributing to the cancer research community, a passion he and his wife shared. In addition, Don is a published author on the topic of advancing patient engagement in cancer research. He regularly speaks at cancer research conferences, sharing his experience and insights with attendees.
Don says his experience at AACR-SSP was truly transformational. He described it as a one-of-a-kind opportunity that offered exposure to expertise of the highest caliber, and it enabled him to elevate his advocacy work to an international level. Don's key takeaways from the AACR Annual Meeting were the focus on how artificial intelligence will continue to be used in medicine, as well as the evolving work in precision oncology and clinical trials.
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