#USA #Washington #Lung Cancer #LUNGevity Foundation #Citizen Scientist

LUNGevity Foundation's Game-Changing Citizen Scientist Initiative

The ongoing battle against lung cancer has just received a powerful ally with the launch of a new program by the LUNGevity Foundation. Recently awarded funding through the Eugene Washington PCORI Engagement Award Program, this initiative aims to transform how individuals affected by lung cancer participate in the research landscape. The LUNGevity Foundation is on a mission to not just include patients in the research conversation, but to equip them with the necessary skills to influence outcomes significantly.

Navigating the Research Landscape

Bellinda King-Kallimanis, PhD, who leads the project, emphasizes that lung cancer remains the primary cause of cancer-related deaths in the United States. Despite advancements in treatment, there exists a pressing need for research that genuinely mirrors the diverse experiences of those living with this disease. This is where the Citizen Scientist program comes into play. By training patients, caregivers, and their loved ones, the initiative fosters a new generation of advocates who actively shape comparative effectiveness research (CER).

CER is crucial as it investigates the comparative benefits and potential downsides of various healthcare options, offering much-needed evidence to enhance patient and caregiver decision-making. Dr. King-Kallimanis stated, “This program reimagines the role of patients and caregivers in the CER ecosystem. We're not just inviting people to the table—we're giving them the tools and confidence to be partners in driving the direction of research that affects their lives.”

A Step-by-Step Learning Experience

Over the next two years, LUNGevity plans to train three cohorts of Citizen Scientists, totaling between 18 to 22 participants. The training will adopt an immersive approach based on adult learning principles. Participants will gain first-hand experience in various research facets including ethics, data analysis, and research design tailored to patient-centered outcomes. Previous Citizen Scientists will mentor new participants under the guidance of an interdisciplinary advisory board composed of clinicians, researchers, and advocates, creating a robust support system.

A standout feature of this initiative is the development of an open-source Citizen Scientist Training Playbook. This document will outline a flexible framework that other organizations can utilize to engage patients in meaningful research partnerships. To ensure wide accessibility, the playbook will be available on the LUNGevity website and disseminated through a national awareness campaign, fostering broader inclusivity in cancer research.

The Commitment to Inclusivity

As stated by Upal Basu Roy, PhD, MPH, LUNGevity's executive director of Research, the program highlights the essential nature of inclusive involvement in the research process. “PCORI's support underscores the importance of inclusive engagement in research,” he asserted, indicating that this project will produce a pipeline of community leaders advocating for research that truly reflects the patients' voices.

The application process for the initial cohort will kick off in early August 2025, with a pressing emphasis on attracting intergenerational and multicultural participants. Graduates from the program will emerge as potential advisors and advocates in the cancer research ecosystem, ensuring that future studies align with patient needs and priorities.

A Broader Vision

LUNGevity Foundation, recognized as the preeminent organization for lung cancer in the U.S., is dedicated to effecting immediate improvements in the life quality and survival rates of individuals affected by lung cancer. Their multi-faceted approach encompasses innovative research and advocacy initiatives aimed at achieving health equity throughout the care continuum. With approximately 1 in 18 Americans diagnosed with lung cancer in their lifetime, and with no tobacco history accounting for many new cases, the urgency for an initiative like this cannot be overstated.

In conclusion, LUNGevity’s Citizen Scientist program is not just a training initiative; it is a revolutionary shift in how patients and caregivers can influence vital research that could better the future of lung cancer treatment. By empowering individuals, the program intends to make significant strides in patient-centered research, ensuring that no voice goes unheard in the urgent fight against lung cancer.