What are the characteristics and impacts of a patient-led conference? A qualitative study

Background Patient engagement is the practice of “meaningful and active collaboration [of patient partners] in governance, priority setting, conducting research and knowledge translation.” 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 explore (1) the benefits and challenges experienced by PxP steering committee members in a patient-led event and (2) how to better support patient leadership.