Investigating a patient-led conference: What are the characteristics and impacts of patient leadership? A qualitative study
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Background
Patient engagement has been implemented in various settings including clinical, research, and quality improvement, with varying levels of patient contributions and decision-making responsibility. However, little is known about the experiences of patient partners who are in leadership roles in patient-led events. For Patients, By Patients (PxP) is an annual, virtual, patient-led conference that focuses on topics important to patient partners in research. Each year’s PxP steering committee is comprised of those with patient experiences and consequently, offers an opportunity for our research team to explore patient leadership within a conference setting. Understanding more about the intricacies of patient-led events is necessary if we wish to support patient leadership as a valuable form of patient engagement.
Objectives
The aim of this study was to address the current knowledge gap in patient-led events and patient leadership.
Design
We conducted a qualitative descriptive study of semi-structured virtual interviews with PxP conference steering committee members. Thematic analysis was used to identify core themes that were salient to the data.
Setting
International virtual setting via Zoom from Jan 2025-April 2025.
Participants
Purposive sampling was used to conduct interviews with thirteen PxP patient partner steering committee members.
Results
Four core themes were identified in the data: institutional support, steering committee environmental characteristics, personal growth, and new possibilities.
Conclusions
Patient-led events offer an opportunity to promote patient leadership. To facilitate patient leadership in this setting, several factors are important including attention to power dynamics, institutional support, and considerations for accessibility and intersectionality.
