The Takeda Oncology Patient Leadership Council
Jennifer A. – Patient
Jack A. – Patient
Kimberly A. – Caregiver
Yelak B. – Patient
Cheryl B. – Patient
Cynthia C. – Patient
Amy G. – Patient
Matthew G. – Patient
Nancy K. – Caregiver
John K. – Patient
James O. – Patient
Gary P. – Patient
Lori P. – Caregiver
Internal Project Sponsors:
Fatima Scipione, Senior Director, Patient Advocacy, Takeda Oncology
Scott Campbell, Associate Director, Patient Advocacy Takeda Oncology
Shaping Takeda’s Approach with Patients
Since its inception in 2015, the Takeda Oncology Patient Leadership Council (PLC) has provided insight into unmet needs of the multiple myeloma patient and caregiver communities with the goal of supporting patients throughout their journeys. The group has significantly shaped Takeda’s strategy for engagement with the patient community.
The 13 members are living with multiple myeloma, but crucially, they are also leading patient advocates. They are published, sit on steering committees, and are involved with patient advocacy organizations.
They have opened up to share their experiences and engage in an ongoing dialogue. By participating in the PLC, they get opportunities to extend the reach of their impact, both through external engagements and Takeda initiatives. For example, one PLC member sits on Takeda’s Global INSIGHT-MM Steering Committee to bring the patient perspective into clinical research. His experience and knowledge has helped shape the study design, execution, analysis, and even publication plans. INSIGHT-MM is the world’s largest company-sponsored study of its kind, enrolling 5,000 patients with newly diagnosed or relapsed/refractory multiple myeloma at more than 150 study sites in 15 countries across five continents. The goal is to understand patients’ real experiences with treatments from any company and their clinical outcomes.
PLC members have provided input on several Takeda Oncology initiatives, including the My Mentor Connections peer-to-peer mentor program, an internal education initiative, and patient-facing educational materials. They have also shared their personal stories about their treatment journeys at several Takeda engagements and contributed to materials on managing work-life balance during treatment, a turn-key program for the creation of support groups, and awareness campaigns for patients and physicians. One of the roundtables they convened was also featured in several publications, including The Oncology Nurse APN/PA, The Journal of Oncology Navigation & Survivorship, and CONQUER, the official patient magazine of the Academy of Oncology Nurse & Patient Navigators.
In light of the PLC’s impressive achievements thus far, Takeda decided to expand the program globally. A similar patient body is now active in Europe, spanning both the multiple myeloma and lymphoma communities. Additionally, a PLC has been formed to provide guidance on research and development initiatives.