ENGAGING PEOPLE LIVING WITH LUNG CANCER IN PROJECT TRANSFORM: INTEGRATING THE PATIENT EXPERIENCE INTO LUNG CANCER RESEARCH, TREATMENTS, AND POLICY

Purpose: Lung cancer is the leading cause of cancer mortality in the US, accounting for 27 percent of cancer deaths. Novel treatments have improved outcomes but increased complexity of decision-making. With a vision of integrating the patient experience into lung cancer research, treatments, and policy, we sought to develop a portfolio of patient-centered research. As a first step, we formed a Patient Action Committee (PAC) and engaged people living with lung cancer. The purpose of this engagement was to understand the lived experience of people with lung cancer and to develop a sustained relationship with committee members. 

Method: Researchers at Johns Hopkins University and patient advocates at LUNGevity partnered to developed Project Transform, a unique initiative, guided by the PAC, to make lung-cancer research, treatment, and policy more patient centered. We engaged the committee members during kick-off meetings and conducted flexible, semi-structured interviews. Interviews were recorded, transcribed, and analyzed using Interpretive Phenomenological Analysis (IPA) to detail the lived experience of people with lung cancer and to develop the objectives and scope of Project Transform.

Result: The PAC consists of 27 people with lung cancer varying in disease severity (stages 1- 4), years since diagnosis (1-13), and experiences with treatment (radiation, surgery, chemotherapy, targeted therapy). PAC members were first engaged through two 1-hour meetings at the LUNGevity Hope Summit. We then conducted interviews with PAC member lasting 30-75 minutes. PAC member detailed their experiences in several advocacy activities, spanning awareness campaigns, support groups, outreach and education for others with lung cancer, and public policy. They stressed four key goals for Project Transform: informing people with lung cancer of treatment options; improving access to treatments; bringing the voice of people with lung cancer into all aspects of lung cancer; and increasing political awareness and funding for lung cancer.

Conclusion: Engaging people with lung cancer in Project Transform is an important first step in integrating their experience into lung cancer research, treatments, and policy. By developing the PAC, we will develop a long-term relationship with committee members, and they will play a vital role in shaping future initiatives. We will also form a Stakeholder Action Committee (SAC) to engage clinicians, researchers, industry, and policy makers and develop a survey for people with lung cancer as a pilot project for Project Transform.