Building Capacity and Patient Engagement Within a Stigmatized Lung Cancer Community

Background: Lung cancer, the leading cause of cancer deaths in the United States, is predominantly caused by cigarette smoke exposure. Marginalized and vulnerable populations are more commonly afflicted by chronic, lifelong cigarette smoking, often placing them at high risk for lung cancer, health disparities and inequities. Patients with lung cancer who have and have not smoked cigarettes are stigmatized by society, the healthcare system and providers. The intensity and ever-presence of such stigma lead patients to experience self-stigmatization, nihilism and fatalism. These stigma-related experiences directly influence access to evidence-based lung cancer care, clinical outcomes, survival and engagement in research.

Proposed Solution to the Problem: Build capacity and patient engagement within the stigmatized lung cancer community and identify critical priorities for meaningful and effective patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER).

Objectives: This project will aim to build national capacity for lung cancer PCOR/CER by acknowledging and addressing stigma as a unique obstacle for patient engagement within the lung cancer community.

 Specifically, the project aims to: 

1. Engage and virtually convene a diverse coalition of community partners (i.e., survivors and caregivers) and clinician-scientists to serve as a Lung Cancer Advisory Board (LCAB)
2. Build a diverse coalition of survivors and caregivers affected by lung cancer to participate in a Lung Cancer Engagement Network (LCEN)
3. Informed by patient engagement best practices, use group concept mapping to elicit and prioritize research needs from the LCEN to improve equitable health outcomes for all people diagnosed with lung cancer
4. Develop lung cancer patient, healthcare provider and researcher training materials to promote capacity building and lung cancer patient-engaged PCOR/CER and develop promising practices for patient engagement and policies and procedures for engaging and recruiting a diverse lung cancer community in future PCOR/CER

Activities: This project will convene a diverse coalition of lung cancer community partners (i.e., survivors and caregivers), clinicians and researchers to serve as an LCAB. The LCAB, existing PCOR/CER tools and key partnerships will be used to build a diverse coalition of survivors and caregivers affected by lung cancer to participate in an LCEN. Partner engagement best practices and group concept mapping will be used to elicit and prioritize research needs from the LCEN to improve equitable health outcomes for all people diagnosed with lung cancer. Patient, healthcare provider and research training materials, training materials dissemination plan, and projected promising practices will be developed to promote capacity building and future lung cancer patient-engaged PCOR/CER. An advisory board comprising previous PCORI engagement awardees will serve as an expert project review board.

Projected Outcomes and Outputs: This project will leverage lung cancer advisors and a host of outlets to recruit and build a large LCEN of lung cancer survivors who most closely represent the diverse lung cancer community. This representative LCEN will participate in group concept mapping to brainstorm and sort themes critical to the lung cancer community.

Short-term outcomes during the project period include:

1. Identify and convene the LCEN of lung cancer patients and caregivers
2. Prioritize future PCOR/CER needs using group concept mapping and focus groups and rigorous PCOR/CER priorities/needs assessment identifying:
   1. Opportunities for engagement practices to promote capacity building
   2. Priority PCOR/CER  questions
   3. Development of patient, healthcare provider and researcher training material(s) for use zero-two years post project period and beyond
3. Identify promising practices for lung cancer patient engagement plan

Medium-term outcomes (0-2 years post-project period) include:

1. Engaged LCEN will inform research and participate in designing rigorous and impactful studies that will directly benefit the lung cancer community
2. Share the LCEN/patient-informed prioritized PCOR/CER needs with key stakeholders, including lung cancer researchers
3. Broad dissemination of patient engagement materials to ensure additional lung cancer community members are properly engaged in a nonstigmatizing way

Long-term outcomes (3+ years post project period) include:

1. Develop and disseminate destigmatizing strategies to enhance high-quality, equitable lung cancer care
2. Contribute to the elimination of lung cancer stigma to improve capacity and research enrollment through a more representative population of the entire lung cancer community
3. Improve lung cancer outcomes, including survival rate and quality of life for all people with lung cancer

Patient and Stakeholder Engagement Plan: Lung cancer survivors and caregivers who represent the diversity of this community will be central in all aspects of this project that elevates their voice, accurately portrays their needs, and ensure resources derived from this work are effective at engaging and building capacity for PCOR/CER.

Project Collaborators: Previous PCORI Engagement Award recipients Cara Pasquale, Scott Ramsey, M.D., Ph.D., and Angela Smith, M.D., M.S., provided permission to utilize their PCORI engagement tools and serve or appoint a qualified colleague to serve on our Engagement Advisory Board. Pasquale will support patient recruitment through the COPD Foundation membership. GO2 will provide similar support.