The Development and Impact of AYA Can—Canadian Cancer Advocacy: A Peer-Led Advocacy Organization for Adolescent and Young Adult Cancer in Canada

Abstract

Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can play a pivotal role in advancing outcomes for underserved health conditions, such as AYA cancer. In 2018 a group of AYA patient advocates founded AYA Canada (later renamed to “AYA Can—Canadian Cancer Advocacy”), a peer-led national organization aimed at improving the experiences and outcomes of Canadian AYAs affected by cancer. The aim of this article is to describe the development and impact of AYA Can. AYA Can was incorporated as a not-for-profit organization in 2021 and became a registered charity in 2023. Since 2018, AYA Can has established a thriving community of practice comprising nearly 300 patients, healthcare providers, researchers, and charitable organizations with an interest in advocacy for AYA cancer. Other activities have included advocacy at academic conferences and on scientific committees, collaboration with scientists to advance AYA cancer research, training the next generation of AYA patient advocates through a “patient ambassador program,” and developing a national resource hub to centralize knowledge and information on AYA cancer. Through its work to foster collaboration and amplify patient priorities on a national scale, AYA Can has become a leading voice for AYA cancer advocacy in Canada.

Keywords

• adolescent and young adult cancer
• AYA
• patient advocacy
• patient and public involvement
• empowerment