Patient and Care Partners’ Perspectives on Engagement

Exploring patient and caregiver perceptions

of the meaning of the patient partner role: A

qualitative study

Study aims: To explore patient partners’ motivations for engagement and understanding of their role.

What we did: We interviewed 13 patient partners about their motivations for engagement and understanding of their roles. Themes were generated from the interview response to meet the study aims.

What we found: Sharing the lived patient and caregiver experience was central to how most patient partners defined their role and its purpose, value, and responsibilities. We also identified four other categories of motivations for becoming a patient partner and other contributions that patient partners make to research. Finally, interviews highlighted different types of meanings that could be attached to the title of “patient partner.” Based on our findings, it is very important that academic researchers and patient partners take the time to discuss and understand each other’s underlying motivations for partnering and their thoughts on the purpose, value, and responsibilities of the patient partner role.