Patricia Stoop
Purpose: This patient-led study explored the motivations, experiences, and aspirations for people living with metastatic cancer who volunteer in patient engagement, known as patient partners.
Methods: We used a patient-oriented research approach and selected a qualitative descriptive design. The first author, a peer researcher with metastatic cancer, conducted semi-structured interviews with seven participants. Questions focused on why patient partners volunteered in patient engagement, what they wanted to achieve, what experiences they had, and what challenges they encountered. We used thematic analysis to identify common themes in the transcribed participant interviews which were edited for confidentiality.
Findings: The resulting themes were; contributing fully; creating a better cancer experience; making meaningful connections; giving back; and struggling with the system.
Conclusion: The findings yielded theme-based advice for both patient partners and administrators for creating meaningful patient engagement. Further research led by patient partners could contribute to a more empowered patient engagement program.