Live, Learn, Pass It on: A Patient Advocacy Engagement Project on the Lived Experience of Lung Cancer Survivors

Abstract

Introduction: The objective of this project was to engage survivor–advocates by describing their experiences living with lung cancer in an era of increasing treatment options. Methods: This was a qualitative engagement project with participants from a lung cancer advocacy organization’s survivor advisory board. Interviews were conducted, transcribed, and analyzed for stages and associated experiences using interpretive phenomenological analysis and elements of narrative analysis, in partnership with the patient advocacy organization. Results: Of 27 engaged members, interviews were conducted with 19, mostly long-term survivors with stage 3 or 4 lung cancer. Within the quest for patient-centeredness, we identified 3 stages of the patient experience. The stage Live describes the journey of the lived experience; Learn describes the quest for knowledge, empowerment, and skills; and Pass it on describes making a difference through guiding others, building awareness, and community. Conclusions: Lung cancer survivor–advocates have an intertwined experience of their personal journey, the quest for knowledge, and developing advocacy. Future patient engagement can incorporate these findings into increasing the survivor-centeredness of partnerships and research, particularly for quality of life and shared decision-making.