AYA Care in Japan

June 21, 2022

STRONG-AYA presented at AYA congress in Tokyo

Two STRONGAYA members had the privilege to travel to Tokyo, Japan in May 2025 to deliver a lecture at the 7^th Academic Congress of the AYA Cancer Care and Support Research Group to highlight STRONG AYA on the international stage and to learn more about AYA care in Japan.

STRONG AYA’s senior project manager, Dr Simone Hanebaum, and postdoctoral researcher Silvie Janssen (both from the Netherlands Cancer Institute in Amsterdam), delivered a lecture entitled “Protocol for the development of a Core Outcome Set for Adolescents and Young Adults (AYAs) with cancer”, which presented a brief overview of cancer care in the Netherlands and gave an in-depth overview of the STRONG AYA project and the development of its core outcome set (COS).

Japan’s growing network for AYA oncology

Japanese colleagues in AYA oncology are building up a national network of professionals and hold an annual AYA congress each year which brings together researchers and healthcare professionals from across Japan. They invite speakers from abroad to discuss AYA care and research in other parts of the world as an opportunity to learn and exchange ideas and best practices as Japan seeks to build more formalized age-specific care.

The AYA research group also work closely with JAMT, a non-profit medical translation organization that specializes in oncology, which seeks to make cancer research and resources more accessible to Japanese patients and their doctors by translating English publications into Japanese. One of the large insurance companies in Japan, Meiji Yasuda, funds a research institute that sponsors the congress as well.

Shared vision for advancing age-specific cancer care

Reflecting on the experience, Simone said, “It was an absolute pleasure to visit Tokyo and learn from our colleagues there. The AYA research space is, in general, defined by a shared passion and drive to build up age-specific care that truly transcends borders and languages; it’s always exciting to be a part of that energy, and seeing it outside our consortium and our other collaborations in Europe is always a poignant reminder of what brings us all together. The drive of our Japanese colleagues to deliver the best research and care for AYAs was palpable. What was most striking to me was the reminder that language can be such a barrier to information and research access; working in an international European consortium it is easy to take for granted English proficiency among researchers, and among AYAs themselves; English proficiency in the Netherlands is over 90% for example. If we truly want to build international access to equitable, age-specific care, that means facilitating ways of working, sharing information, and collaboration that are inclusive for patients and researchers in other parts of the world. Federated learning analysis and leveraging AI are possible ways forward, but being on the ground and learning about the local strengths and challenges, be they cultural, bureaucratic, or technological, is always one of the best ways to learn and understand and to think together about how we can overcome them. I would love for us to find a way to include Japanese data and prospective patients in STRONG AYA to see if our COS, which was developed by consensus in a European context, resonates with Japanese patients and their healthcare providers.”

Silvie added, “From the very first moment, we felt incredibly welcomed by our Japanese colleagues. There was a great deal of interest in learning from the Dutch experience and in exchanging ideas about how to improve AYA cancer care and their outcomes. During our lecture and discussions, the audience listened with great attention, asked thoughtful questions, and showed a strong eagerness to learn from one another. There was a genuine curiosity and willingness to share knowledge and experiences across borders which was truly energizing. Beyond sharing our own insights, this experience also gave us renewed motivation and courage to continue our work back in the Netherlands, and to actively seek ways to collaborate internationally even more. By learning from both similarities and differences in our approaches, I am convinced that together we can continue to move AYA care forward—locally and globally.”

In addition to stimulating discussion and questions with colleagues, Simone and Silvie also enjoyed a truly exquisite traditional Japanese dinner with colleagues at the Chinzanso Hotel during firefly season; colleagues in Japan were truly the most generous and hospitable hosts. They were also able to see some of Tokyo’s sites for a couple of days after the lecture, including the Tokyo National Museum, the Shibuya Scramble Crossing, the Meiji Shrine, and the Asakusa district.

“Silvie is a very patient colleague and friend,” Simone said with a laugh, “I think I dragged her into every shop imaginable looking for ramen bowls.”

“I’m truly happy I could share this experience with Simone: besides a lot of ramen bowls, we have seen so much of Tokyo due to Simone being a wonderful tour guide! She sure knows how to make you laugh… something with pancake stacks, and a hotel card and the metro.”