Taking time and making space for patient and caregiver partners
Published August 8, 2025
Patient and caregiver engagement is a paramount element to ensure the voice of lived experience is integrated and prioritized in research. However, what it looks like to actually participate in authentic patient and caregiver engagement can be challenging without understanding the experience of our patient and caregiver partners. I had the honour of interviewing a patient and caregiver partner who bestowed rich guidance about what it means to deliver excellent patient and caregiver engagement in research. Themes of the interview included taking time to collaborate, being mindful and giving gratitude, actively listening to partner voices, leading alongside patient and caregiver partners, and making space at the table for all perspectives. Takeaway messages include recognizing the patient and caregiver partners’ value as a whole person, and building genuine relationships. For researchers interested in engaging with patient and caregiver partners, the messages from this interview provide advice to guide future work to encourage sincere collaboration and share the ways in which research can be a meaningful experience for all members of the team.
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