Project Transform: engaging patient advocates to share their perspectives on improving research, treatment and policy

Objective: Incorporating the patient perspective into lung cancer research, policy and treatment is becoming increasingly recognized as important. This project sought to create an engagement partnership with lung cancer patient advocates and to explore their views on transforming lung cancer healthcare systems, treatment and policy to be more patient centered. Methods: A patient action committee (PAC) of patient advocates living with lung cancer was engaged through group meetings, in-person and phone interviews, and email correspondence. Group meetings (two 1 hour meetings, one 3 hour meeting) served to discuss engagement strategies and project goals, while individual interviews (n = 19) (30–75 minutes) provided in-depth exploration of individuals’ perspectives. Meetings and interviews were recorded to identify priorities for addressing issues within lung cancer research, treatment and policy. PAC members corroborated the results through email and in-person meetings. Results: PAC members identified three general objectives: (i) for healthcare systems, increasing access to care through accessible, coordinated and affordable care, (ii) for treatment, addressing patient needs in treatment and research through patient education, shared decisions and clinical trials, and (iii) for policy, shining a light on lung cancer through screening policies, public awareness and research funding. Conclusion: Patient advocates expressed their views that lung cancer is a neglected disease that is not highly prioritized in healthcare systems, treatment approaches and public perceptions. This project represents an integral step in developing an ongoing partnership between researchers and these advocates.