PatientsListening to Patients’ Voice and Responding to Their Needs: Kyowa Kirin's Patient Engagement Activities

Kyowa Kirin has established a vision toward 2030: realizing the successful creation and delivery of life-changing value that ultimately makes people smile. As part of this commitment, we are strengthening its patient engagement/advocacy efforts to promote correct understanding of disease in society and solve unmet medical needs through collaboration and cocreation with patient and medical communities.
In this feature, we will explore Kyowa Kirin's patient engagement activities to date and what we have planned for the future.

Since the spring of 2021, the Patient Advocacy Group within the Corporate Communications Department has been central to these efforts. The team acts as a liaison for patient advocacy groups(PAGs), coordinates company-wide events, and supports initiatives of various divisions and departments, including Research, Development, Medical Affairs, and Manufacturing.

The R&D Division (currently reorganized into the Research Division and the Development Division, respectively) actively promotes patient engagement activities. These activities focus on gaining a deep understanding of the life experiences and challenges faced by patients living with or caring for people with a disease, which is achieved through dialogue and discussion with PAGs, as well as meaningful co-creation.
The patient engagement initiative began to gain momentum in the fall of 2021. In line with our Vision, we established a task force composed of members who voluntarily offered to promote patient engagement. Since then, various activities have been implemented to realize an ideal future by 2025─one in which there are more patients with smiles on their faces through research and development that addresses patient-centered medical needs.

These activities focus on fostering a mindset among the members of the R&D Division. To begin, they organized group sessions every six months for all employees within the division to emphasize the importance of patient engagement activities and changes in the external environment.
In 2022, pharmaceutical companies with a shared vision collaborated to establish the “Healthcare Cafe” - an initiative that aims to address the genuine needs of patients and their families by promoting dialogue between them and R&D Division employees. It includes lectures and other events to share the insights gained from it with other employees. By broadening the topics discussed to encompass not only diseases but also lifestyles and personal perspectives on life, participants can uncover needs that are often overlooked in literature or academic research. This approach enhances the understanding of diseases and provides new insights.

Such opportunities enable employees to connect with patients and reflect on their experiences, resulting in increased motivation.

In our research and development efforts, we have undertaken several activities to incorporate patient perspectives into the drug development process. As a result, we have identified unmet medical needs that have been previously overlooked, as well as common challenges faced by patients, and found ways to improve the wording of documents provided to patients participating in clinical trials.
Additionally, we are enhancing our internal systems by establishing procedures that promote patient engagement activities. This includes adding templates for patient journey maps to meeting materials, which allow for better understanding and acknowledgment of patient experiences starting from the research phase.

Activities to incorporate patient voices are carried out at Kyowa Kirin locations around the world. In the United States, we have hosted campaigns and awareness-raising events in collaboration with local partner organizations.

Additionally, while activities have been conducted by various functions and regions, in 2024, we established cross-functional and cross-regional task forces to foster synergy across the entire Kyowa Kirin Group. This effort included the development of activity guidelines, creating a lexicon to standardize the terminology, and clarifying the roles of each function and region.

The outcomes of the R&D activities are reflected in an annual survey that has been carried out since 2021. In 2024, an impressive 90.8% of respondents answered "yes" to the question, "Do you believe that you should make specific patient-oriented efforts in your work?" Additionally, there was a significant change in responses to the question, 'To what extent do you believe Kyowa Kirin is promoting patient-oriented research and development?' The percentage of patients who felt they were promoting patient-oriented research and development significantly increased from 26.2% in 2021 to 82.7% in 2024.

On the other hand, the percentage of people who answered 'yes' to the question, 'Do you feel that your daily work contributes to the smiles of those facing diseases?' was 68.8% in 2021 and 74.7% in 2024, showing no significant increase."

The findings suggest there is a strong understanding of the importance of patient engagement activities within R&D. However, a significant challenge moving forward is to encourage employees to identify specific patient engagement activities that should be implemented in their research and development efforts and to link these ideas to actionable steps. To support this, we believe it is necessary to continue sharing successful examples of incorporating the patient's perspective into research and development activities.

Balancing the speed of research and development also poses a challenge. It is essential to develop creative approaches for engaging patients without delaying the submission of approval applications.

Another key challenge is collaborating with patients to enhance engagement activities. These activities can only succeed with the cooperation of patients and their families. However, translating collaboration during the research and development phase into new drugs for patients often takes considerable time and involves significant uncertainty. As partners in the development of better new drugs, we are committed to exploring ways to work alongside patients in our activities

Kohei Kato of the Corporate Communications Department’s Patient Advocacy Group had this to say about the future of Kyowa Kirin's patient engagement activities:

“Since its formation in 2021, the Patient Advocacy Team has been actively supporting various departments within the company and fostering inter-departmental collaboration to enhance engagement with patients. Throughout the development process, there are numerous opportunities to directly incorporate the insights and feedback of patients and their families into our work. Therefore, we believe it is essential to maintain collaboration at the appropriate time frames and methods to cultivate a mutually beneficial relationship between patients and Kyowa Kirin.”

Kyowa Kirin will continue to actively collaborate with patients and their families as partners in research and development, contributing to the development of innovative treatments that address unmet needs.

The activities mentioned in the article were conducted in Japan under the relevant laws and regulations of Japan.