Patient Advocacy Mentorship: Panda and Friends in China
GCCA’s CEO, Andrew Spiegel, and President, Nicole Sheahan visited China to meet with the patient advocacy group Panda and Friends. More than 500,000 people are diagnosed with colorectal cancer in China each year, and nearly 250,000 die of the disease. Panda and Friends is participating in the GCCA Patient Advocacy Mentorship in which GCCA leaders and leaders from experienced members provide tailored assessments, guided strategic planning, financial support, and advice to advocates and advocacy organizations.
Sheahan and Spiegel were welcomed by members of the Merck China team who sponsored this mentorship visit and a briefing session to explore the landscape of colorectal cancer in China. Regarding this trip, Merck issued this statement, “Patient advocacy groups are an integral part of the healthcare ecosystem. Merck, on a global scale, communicates and collaborates with patients and their caregivers through patient organizations. We are particularly thrilled to welcome Global Colon Cancer Association to China – not only it is the first time that GCCA sets foot in China, exploring the landscape of colorectal cancer and meeting with Chinese peers, it is also a one-of-a-kind experience for Merck China to host a global umbrella organization to empower more Chinese patient organizations and make sure that CRC patients’ voices are heard. With these goals in mind, Merck understands the challenges that our patients are facing, and will continue to devote to bringing hopes to people and improving their conditions together with our partners.”
Sheahan and Spiegel held a Patient Group Mentorship Workshop with Panda and Friends, as well as two other patient advocacy groups, Dance with Cancer and Cancer-Free. Each organization presented the work that they are doing to support their communities. GCCA shared insights on evolving a non-profit over time to meet the needs of the community.
The New Sunshine Charity Foundation, an established patient advocacy group originating in the area of hematologic cancers, shared their valuable knowledge with the mentorship group. They have more than 20 years of experience and provide direct patient services, including in-hospital education for children with cancer and financial relief, as well as education to medical and nursing professionals.
The centerpiece of the trip was the intensive one-on-one mentorship meeting with Mr. Han and his team at Panda and Friends. "GCCA is honored to work with such a formidable group, and to share our experience in CRC advocacy. In our time with Mr. Han and Panda and Friends, we were fortunate to discuss important topics such as community engagement, awareness, policy planning, and growth strategies. We are looking forward to a continued partnership."
At the Chinese Academy of Medical Sciences Cancer Hospital, Sheahan and Spiegel met with Professors Youlin Qiao and Anli Shi. The epidemiologists’ large-scale face-to-face survey of colorectal cancer diagnosis and treatment included visits to 19 hospitals in 7 administrative regions and involved interviews with more than 4500 patients and family members. Professors Qiao and Shi discussed their research and the concerns raised by the findings, including high rates of late diagnosis, minimal public awareness of colorectal cancer, and low utilization rates of genetic testing and targeted therapies.
GCCA took an extensive tour of Peking University Shougang Hospital where Sheahan and Spiegel met with hospital president and CRC specialist oncologist Dr. Jin Gu and learned about the hospital’s innovative hospice program and multidisciplinary colorectal cancer team.
Patient advocacy groups across disease states are a valuable source of experience and knowledge. While in China, Sheahan and Spiegel met with peers from the Hongiman Cancer and Rare Diseases Foundation, Chinese Organization for Rare Disorders, and the Aili Myasthenia Gravis Care Center.
Learn more about the GCCA mentorship program.