Elevating Diverse Lived Experiences in Cancer Research
Voices of lived experience are integral to conducting meaningful and impactful cancer research. These voices are diverse, each bringing their own perspectives and experiences to shaping and delivering ground-breaking research and care. While the voices of people with lived and/or living experience (PWLLE) are deeply unique, they often represent the experiences of many others navigating similar challenges in the cancer care system―from physical and emotional obstacles to economic and financial hardships to social and relationship stressors.
Actively engaging diverse lived experiences is critical to ensuring that cancer research is inclusive and reflective of real-world experiences. When cancer research is inclusive and tailored to the needs of those it is intended to serve, it can better address disparities and ultimately achieve greater impact. This year, the Institute of Cancer Research (ICR) co-sponsored four new Patient Advocates with the American Association for Cancer Research (AACR) to attend the AACR Scientist↔Survivor Program® (AACR-SSP) and AACR Annual Meeting. This program offers PWLLE a unique opportunity to share their experiences at an international forum and foster deeper connections with the cancer research community through learning, networking and knowledge exchange.
Learn more about our Advocates' journeys to AACR-SSP and how the program impacted them:
Dana MJ Bellis
Jaad Gudangaa 'laas of the Yahgu Laanaas Raven Clan
"My mother was so proud of me when I got the email saying I'd been accepted. Our dream was to bring our story from Haida Gwaii into global cancer research. Some people get angry—she never did. She'd say, "you don't know what you don't know." Her light sent me forward—to share, to collaborate, to ask juicy questions that will change how knowledge and systems are built.
Here's the secret: her light wasn't just for me—it was for all of us. Patient partner voices catalyze research. We need your voice to help drive us forward. Please, will you come and help?"
Dana Bellis, or Jaad Gudangaa 'laas, is a dual citizen of the Haida Nation and Canada. Raised bi-culturally in Masset on Haida Gwaii, Dana is known for infusing kindness, innovation, and collaboration into complex systems. You'll often find her walking the beach with her beloved fur babies, dreaming up ways to make systems serve people—not the other way around.
Dana's cancer advocacy began at home as a caregiver, first for her grandmother through lung cancer and then for her mother—who passed away from pancreatic cancer in March 2025. Caring for her mother gave Dana the lived experience of accessing cancer treatment and end-of-life care in rural island oncology. Being able to support her mother's wish for a home death—warm in her own bed's flannel sheets—has shown her the power of a beautiful death. These moments sparked her passion to find and ask interesting questions about the empowerment of choice, redefining hope, and finding peace—for those facing cancer, and for those who carry on.
As a Patient Partner with the Canadian Cancer Society, Dana has contributed to cancer research funding panels, program design and advising, and travel and accommodation advisory work. She thrives at the intersection of lived experience and system design, championing rural cancer care that is safe, accessible, and guided by community wisdom—always grounded in the people it is meant to serve.
Impact of AACR-SSP
Dana's poster, "Chemo at the Edge of the World," shared her and her Irish Canadian mother's cancer journey on Haida Gwaii—where chemo arrives by float plane, prescriptions are managed by telepharmacy, and community care and resilience are exceptional.
Through storytelling rooted in both rural island reality and Haida values, Dana's presence sparked interesting questions and next steps from the research community about how cancer research and services can better support rural oncology for communities like Haida Gwaii. Dana left AACR transformed, energized by a wealth of new knowledge, and left others forever changed. She is grateful to the Canadian Cancer Society, ICR, and AACR for supporting her SSP experience.
Over the next year, she is looking forward to sharing her poster and AACR experience through hosting a community reporting session on Haida Gwaii, engaging with provincial leadership, and presenting to leading national research teams. If you are interested in learning more, feel free to connect directly with her.
Related reading:
- Chemo at the Edge of the World Digital Poster Package
- Learn more about Haida Gwaii Cancer Care
- Dana's Photos of Haida Gwaii
Social Media:
- LinkedIn: Dana Bellis
Megan Sewell
"I came away from AACR-SSP with a stronger sense of purpose. I made new connections and feel even more committed to advocating for more complete access to life-saving treatments. We all need to rethink how we approach cancer—not just by treating the disease, but by supporting the whole person throughout their journey."
In 2016, Megan was diagnosed with de novo stage 4 inoperable HER2+ HR- Inflammatory Breast Cancer and secondary lymphedema in 2017. After undergoing a double mastectomy and radiation in 2018, she discontinued what was intended to be lifelong treatment in 2020 and has remained in a state of "no evidence of disease" (NED). Now, an active advocate for metastatic breast cancer and secondary lymphedema, Megan has contributed to research initiatives in many capacities. She has served as a Patient Reviewer for the Canadian Cancer Society's Research Training Awards and has been involved with RRCancer, CIHR, the Canadian Breast Cancer Network and the Lymphedema Association of Quebec (LAQ). In 2024, she co-chaired a panel at the 13th RRCancer Symposium and was appointed as a patient mentor for McGill University's Interdisciplinary Cancer Sciences Program. Megan also serves on the Executive Committee of a non-profit breast cancer survivor dragon boat team as the Social Media Marketing Director.
Impact of AACR-SSP
Megan left AACR-SSP with reinforced respect and inspiration for the researchers and clinicians working tirelessly behind the scenes. She found it to be an incredible learning experience and as equally rewarding to present her poster "Integrating the Patient Voice into the Training of the Next Generation of Scientists". Her poster explained the significance of including patient experiences at the onset of researcher education and emphasized the importance of a whole-person approach. Considering the full patient experience helps build stronger connections between researchers and the cancer community, which can ultimately lead to better outcomes for everyone affected by cancer.
Related reading:
Carolyn Van
"My experience at AACR-SSP was rewarding, educational and insightful. It was a powerful and timely reminder of the sheer volume of individuals and organizations that are on our side, how valuable we are as advocates, and what the lived cancer experience can ignite in us. The connections made and conversations I had added more kindling and fuel to the fire."
In 2014, Carolyn was diagnosed with Non-Hodgkin's lymphoma. While in the throws of diagnosis, treatment and recovery, she observed and identified opportunities for better cancer futures. She has dedicated a portion of her research and program/service design and delivery leadership and operations management expertise to those who wish to serve those impacted by cancer.
While Carolyn's professional expertise lies in business management, she is particularly interested in applying her unique skillset to survivorship, recovery and quality of life for those living with cancer, including those years beyond diagnosis and treatment, reducing health disparities, and examining, re-framing and re-defining what quality in care means.
Carolyn has worked with and has been featured by Young Adult Cancer Canada, the University of Maryland's School of Social Work, the University Health Network, and Mediaplanet's network, to name a few. Most recently, she launched Candidly with Carolyn, a podcast that aims to de-stigmatize, humanize and normalize everyday conversations about life with and after cancer.
Impact of AACR-SSP
For Carolyn, her experience at AACR-SSP was an important reminder of what diverse and varied advocacy can look like on a global scale. She learned about current cancer research priorities, advancements and knowledge gaps. Moreover, the connections Carolyn made were invaluable, engaging in noteworthy exchanges with fellow advocates, scientists and clinicians on topics of precision oncology, design processes, opportunities with artificial intelligence, health care disparities in minoritized populations, and young adult cancer.
Related reading:
Social Media:
- Instagram: Candidly with Carolyn
- Instagram: Carolyn Van
Martina Wood
"Patient advocacy has come a long way and is now being recognized as integral to the research paradigm. We have a voice and a seat at the table. There was so much to learn at AACR. It was the perfect resource for me to expand my knowledge base and share with others."
Martina is a cancer advocate, having served as an advocate for family members, other women, and herself when undergoing treatment for early breast cancer in 2014. Later, Martina wrote Smart Decisions about Breast Cancer and joined several online breast cancer groups to support more women in their journeys of surviving and thriving.
Martina spent eight years at the Canadian Cancer Trials Group as a patient representative to review proposals and related documents for the gynecological and breast cancer committees. She has been involved in a number of working groups for patient facing communications, clinical trial funding approvals, and patient research priorities. Currently, Martina volunteers with Trillium Health Partners and ad hoc for the Canadian Cancer Society and specific research studies.
Impact of AACR-SSP
Martina had an amazing experience at AACR-SSP, ranging from learning about the work of other patient advocates to building relationships internationally to learning about the latest research and visiting posters. She had a number of key takeaways from her experience at AACR, including how artificial intelligence is being used in drug testing, accessing clinical guidelines and in pathology. Martina also learned more about the nuances of adaptive therapy, particularly the differences between "resistant" and "sensitive" cancer cells and their applications to therapies.
Related reading:
Social Media:
- Instagram: @artsy_quilt_cottage
- LinkedIn: Martina Wood
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