JSMO Poster: Advocacy in Japan
Download white paper in English
While colorectal cancer incidence and mortality rates are similar in Japan and the United States, the patient experience and advocacy landscape varies greatly. Patient advocacy in Japan is typically centered on support groups, while patient education, patient's rights, and policy engagement are lacking. The Global Colon Cancer Association (GCCA) partnered with CancerNet Japan to host an in-person event in Tokyo in July 2024, bringing together a group of advocates, survivors, and industry for a panel discussion on the future of patient advocacy in Japan. Attendees representing a variety of disease states within oncology participated in a lively discussion around challenges and opportunities. Following the in-person event, GCCA conducted individual virtual insight exchanges with participants. This offered an opportunity for participants to provide feedback after reflecting on the discussion at the event.
Aiko Brody, patient advocate and GCCA consultant, said of the event, "We explained how the patient advocacy organization operates and where we stand in the U.S. medical field. This was a big surprise for the Japanese participants, as we showed them how it could operate this way if we collaborated. Japan has many layers of walls that prevent patient advocates from working in the medical field. Some situations were challenging for us to comprehend. I hope to continue creating space for discussion and find a way to mentor patient advocates and their leadership. One day, they can be at the table at the same level as doctors and industries to communicate and create better medical services for society."
Mami Koga, Managing Director of CancerNet Japan, remarked "The 4th Basic Plan for Promoting Cancer Control, established in Japan, includes a new provision titled "promotion of patient and citizen participation," the opinions of patients and patient advocacy groups are expected to become increasingly important. We hope to learn from advocacy activities in the United States and move forward toward solving problems by ensuring that various stakeholders, such as medical professionals and industry people, are in a balanced relationship so Japanese patients can receive better medical services.
The findings of the interviews and the event have led GCCA to the development of a poster and white paper in partnership with CancerNet Japan, highlighting the current landscape of patient advocacy in Japan as well as opportunities for action. The poster, “Patient Advocacy in Japan: Challenges, Opportunities, and the Path Forward” is being presented at the March 2025 Japanese Society of Medical Oncology Annual Meeting in Kobe, Japan. A second in-person event for advocates, survivors, and industry will take place in Tokyo this month.
Candace Henley, GCCA's Director of Equity and Partnerships added, "This initiative's objective is to inspire and provide stakeholders, including patients, healthcare providers, and advocates, with a roadmap for advancing patient advocacy in Japan. Their role is crucial in addressing current barriers and integrating more proactive advocacy efforts. Global partnerships and collaboration offer a powerful opportunity to strengthen patient advocacy in Japan. Japanese advocates can build capacity, amplify their voices, and drive meaningful change in the healthcare system. Together, we can develop a stronger, more effective patient advocacy movement that better serves Japan's healthcare needs. This experience has reinforced the importance of meeting people where they are and finding effective ways to advance advocacy that resonates with them."
For more information, please contact Aiko@globalcca.org.