Lived Experience Hub Advocates at Events Insights is a collection of conversations with patient advocates and people with lived cancer experience, sharing their perspectives on scientific conferences, training, and events and highlighting the value of bringing the patient voice into research and healthcare.
Mary Nafula | Kenya | Warriors of Hope Pwani and Board Member, National Cancer Institute of Kenya (NCI Kenya)
What motivated you to attend the conference?
My motivation for attending the World Cancer Congress was to learn from global cancer experts, patient advocates, researchers, policymakers, and civil society organisations and bring that knowledge back to Kenya. As a cancer survivor and advocate, I wanted to strengthen my understanding of emerging approaches to cancer prevention, early detection, treatment, survivorship, palliative care, and patient-centred cancer care. I was particularly interested in learning how different countries address inequalities in access to cancer services and how patient voices can be meaningfully included in cancer policy.
I also saw the Congress as an opportunity to build partnerships that can strengthen the work of the Warriors of Hope Foundation and ensure underserved communities in Kenya are represented on global platforms.
How did you fund your attendance?
My participation was supported by the National Cancer Institute of Kenya (NCI Kenya), where I serve on the Board as a representative of persons with lived experience. This institutional funding enabled me to represent the needs and priorities of cancer patients without personally bearing significant international travel costs. It reinforced my belief that patient and survivor voices should be intentionally included and supported by institutions, rather than expecting advocates to participate only when they can self-fund.
What session had the biggest impact on you, and why?
The session titled ‘Unlocking Transformational Change Through Lived Experience Leadership’ had the greatest impact on me. It spoke directly to my journey as a survivor and as an NCI Kenya Board member. Having navigated diagnosis, treatment, and care challenges, the session served as a powerful reminder that lived experience is not just a story – it is valuable expertise that can shape better healthcare policies and services.
What surprised you the most?
What surprised and inspired me most was seeing how powerful lived experience can be in shaping cancer policies and health systems when survivors and advocates sit at the decision-making table influencing outcomes. It proved that survivor voices are vital evidence for driving real policy changes.
Did you feel that the patient perspective was well represented?
While patient perspectives were represented, I believe a significant gap remains globally. Patients and people with lived experience need to be more than attendees; we must be meaningfully involved in decision-making, policy development, research, and the design of cancer services. The future of cancer care must be built with patients, not just for patients.
If you could change one thing about the conference for patient advocates, what would it be?
I would create dedicated spaces for patient advocates to connect directly with policymakers and researchers to help shape the conference agenda and solutions. Additionally, I would make these opportunities far more accessible to advocates from low- and middle-income countries (LMICs), whose perspectives are often underrepresented globally.
Did you make any new collaborations or connections?
Yes. The Congress provided a valuable platform to connect with advocates, cancer organisations, researchers, and healthcare professionals across various countries, opening doors for future knowledge-sharing and joint advocacy.
If another advocate is considering attending next year, what advice would you give them?
Go with an open mind, a clear purpose, and the conviction that your lived experience is a powerful source of knowledge. Network widely, ask questions, build relationships, and look beyond formal sessions for meaningful opportunities to collaborate.
What would you like organizers to know about people with lived cancer experience and advocates who attend the conference?
Organisers should recognise that people with lived experience are partners, change-makers, and bridges between communities and health systems. Meaningful involvement goes beyond issuing an invitation to attend; advocates should be actively involved in shaping the agenda, discussions, and decisions.
What value do patient advocates and people with lived experiences bring to researchers, healthcare professionals, and industry during scientific conferences?
Advocates bring the human perspective to scientific discussions, illuminating real-world barriers to diagnosis, treatment access, affordability, and quality of life. Most importantly, lived experience serves as a constant reminder that behind every statistic is a person, a family, and a life that matters.
You can also read: Highlights from World Cancer Congress 2026
Highlights from World Cancer Congress 2026 – Part 2
