Celebrating our Patient Partners
June 4 was National Cancer Survivors Day. This day, recognized the first Sunday of June each year, commemorates those living with and beyond cancer. As the Institute of Cancer Research (ICR) continues its mission to improve cancer outcomes and promote the well-being of those affected by cancer, this day serves as a reminder to learn from and listen to those who inspire our cancer research community every day.
ICR co-sponsored patient partners Amy Clark and Thomas Flannery to attend the American Association for Cancer Research’s (AACR) Scientist ↔ Survivor Program in April, an opportunity that brings together patient partners and mentors, such as scientists and physicians, to share insights, engage in deliberative dialogue, and mutually develop a better understanding of the cancer research landscape and the patient experience.
Learn more about Amy and Thomas’ advocacy work and their experiences at AACR:
Amy Clark
“The part of advocacy that I find the most fulfilling is networking with other advocates and members of the larger cancer community. Being able to voice concerns and applaud the most important people in cancer research is a privilege that few people have an opportunity to experience. Seeing how the voice of advocates makes a difference to people battling cancer is what drives me forward.”
Since surviving stage 4 advanced throat cancer, Amy has committed herself to advocacy work in order to give back to the community that rallied behind her. Having participated in a clinical trial, Amy was asked to be the patient representative for the clinical trial department at her local cancer center. That role led her to becoming the former Chair of the Canadian Cancer Clinical Trials Network (3CTN) Patient Representative Advisory Council, giving her the opportunity to attend several national conferences.
Amy’s work at 3CTN connected her to the Canadian Cancer Society, where she currently serves as a patient reviewer for grant and study requests. Amy also volunteers with the Never Alone Cancer Foundation in Winnipeg to help with fundraising, patient mentoring, and has spoken on their behalf to media and at community events. Amy believes that she cannot move forward without giving back, which is ultimately, what drives her advocacy work.
The opportunity to attend AACR was both overwhelming and exciting for Amy and she learned just how critical patient advocates are in advancing cancer research. She felt the exposure to myriad advocacy paths was empowering, and while she may not fully understand the science, her voice can and needs to be heard. Now, she is emboldened to aspire to even greater advocacy work and AACR offered her the tools to do so.
Thomas Flannery
“When you know that you have reached others and have made a difference, that is the best part of advocacy.”
Thomas's role in patient advocacy began in 2012 with his contribution to the Toronto Prostate Cancer Support group. He then expanded that role to peer-to-peer counseling, advising men in need and providing suggestions and questions for them to discuss with their medical team. In addition, he was invited to participate with the Warriors, an advanced prostate cancer support group addressing the specific needs of men with advanced prostate cancer.
The Prostate Cancer Foundation BC approached Thomas to start a national advanced prostate support group, which aimed to deliver support to men in vastly underserved areas of Canada. Many men and their support systems reside in areas of Canada that do not have access to local support groups, and this initiative was developed to address this regional disparity.
Thomas, along with a group of like-minded men, developed the framework for this initiative and its delivery model. When it came time to deliver this support, Thomas volunteered to be one of the leaders, facilitating Zoom meetings and one-on-one peer counseling. Thomas brings his science background and his extensive knowledge and experience with prostate cancer to his on-camera presence and in his one-on-one encounters.
Experiencing advocacy first hand at AACR had a very significant and profound impact on Thomas. Discussing and asking researchers questions about their proposed new Active Surveillance protocol for prostate cancer was a highlight of his experience. Thomas advocated for less invasive and more efficient procedures to researchers, which showed him how much of a difference patient advocacy can make in the delivery of new procedures and protocols. One of his key takeaways was how essential patient input and perspective is in the design of new clinical trials and procedures.
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