Lung Cancer Engagement Network (LCEN)

Research Priorities Informed by Lung Cancer Survivor and Caregiver Voices

PROJECT MISSION
Improving the lives of people affected by lung cancer requires research that focuses on quality of care and life.

PROJECT OVERVIEW
The project collaborators convened the Lung Cancer Engagement Network (LCEN), a broad and diverse community of lung cancer survivors and caregivers to fulfill this mission. The LCEN was tasked with one clear objective: to identify the most important research priorities for the lung cancer community and bring forward a person and caregiver-centered research agenda.

Through months of collaboration, participation, and shared experience, the LCEN has elevated the voices of survivors and caregivers to help shape the future of lung cancer research. Their collective insights have created a foundation for advancing studies that reflect the real-world needs, values, and experiences of those living with or caring for someone with lung cancer.

How We Did It

More than 140 individuals across the United States participated in the project, including 125 patients and survivors and 15 caregivers.

Participants took part in a structured, multi-phase process using Group Concept Mapping, a mixed-methods approach that combined deidentified brainstorming, sorting, and rating exercises to identify and prioritize key research topics. The LCEN participants’ sorting and rating activities generated the data that informed the development of ten overarching research priority clusters. The project team then conducted statistical analyses to organize these insights and worked with participants through focus groups and review sessions to confirm and refine the results. This scientific process captured research priorities informed by the lived experiences of the lung cancer community. These findings have been prepared as a person and caregiver-centered research agenda.

What We Found

The project produced three main resources that together represent the voices and priorities of patients, survivors, and caregivers affected by lung cancer.

Lung Cancer Research Priorities

This report outlines the ten priority areas that emerged from the engagement process. These include improving communication between patients and providers, addressing psychosocial and practical support needs, refining treatment approaches, and expanding prevention and early detection efforts.

Download report

Promising Practices for Comparative Clinical Effectiveness Research

This resource presents evidence-based strategies designed to strengthen patient and caregiver engagement in research, reduce stigma, and promote equitable participation in lung cancer studies.

Download resource

Communication Strategies for Comparative Clinical Effectiveness Research

This guide provides practical tools and approaches for healthcare professionals to support empathic, stigma-reducing communication that fosters trust and partnership with patients, survivors, and caregivers.

Download guide

Why This Work Matters

By placing lung cancer patients and caregivers at the center of the conversation, the LCEN has created a lasting resource for researchers, clinicians, and advocates who aim to conduct lung cancer studies that truly reflect the needs of the community. These findings demonstrate the power of inclusive engagement and emphasize that the future of lung cancer research must be guided by those with lived experience. The LCEN project stands as a model for how to integrate patient and caregiver perspectives into research design, policy, and care improvement efforts.

This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EACB-29067). The statements presented in this work are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.

This project was approved (May 29, 2024) for IRB Exemption by WCG IRB. The exemption determination was made based on the criteria set forth by the IRB and applicable regulations.

Cancer Center NCI-Designated Comprehensive Cancer Center