Partnership With Patient Advocacy Organizations Improves Research Recruitment

Abstract

Incorporating and elevating the voices of patients and families is of utmost importance in pediatric psychosocial research. While recognized as a priority, this practice is not commonplace, and specific guidance regarding best practices and procedures is largely absent. This paper describes partnering equitably with pediatric oncology patient advocacy groups to conduct the Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study. The partnership was critical for all steps of the research process, including study development, refinement of the survey instrument, and recruitment procedures. We describe our overall approach, providing specific illustrative examples and highlighting opportunities for future growth.