The use of digital social platforms in enhancing the engagement of AYA cancer patients in research: opportunities, challenges, and ethical concerns

This paper examines the use of digital social platforms to enhance the engagement of adolescent and young adult (AYA) cancer patients in research. Among AYAs, digital social networks have emerged as valuable resources for connection, information exchange, and emotional support. Patient engagement, encompassing participation and empowerment, is a critical aspect of AYA oncological research, yet there is a lack of scholarship dissecting the manifestation of these concepts in relation to digital social platforms. This study aims to bridge this gap by employing the frameworks of participatory culture and data ethics to analyze the impact of digital social platforms on patient engagement in research. Semi-structured qualitative interviews were conducted with eight experts from AYA patient organizations to gather insights on this topic. The findings reveal the potential of digital social platforms in fostering peer support, improving patient awareness and collaboration, increasing research enrollment, and diversifying data collection with user-generated content. However, challenges related to communication, privacy, and ethical considerations such as diversity and inclusion were also identified. The study contributes to the understanding of patient engagement among AYA cancer patients in the digital age and the development of effective strategies to encourage and highlight the voices of this patient population.