LUNGevity Foundation Awarded Funding to Launch Groundbreaking Citizen Scientist Program for Lung Cancer Community

Program builds pipeline of patients and caregivers trained to be directly involved in research

WASHINGTON, July 22, 2025 /PRNewswire/ -- LUNGevity Foundation is proud to announce that we been approved for a funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support a bold new initiative designed to empower people impacted by lung cancer to become active contributors to patient-centered research.

Bellinda King-Kallimanis, PhD, senior director of Patient-Focused Research will lead the engagement project at LUNGevity Foundation. Lung cancer remains the leading cause of cancer-related death in the United States. Despite major advances in treatment, there is still a critical need to ensure research reflects the diverse experiences and priorities of people living with the disease.

With support from PCORI, LUNGevity will train a new cohort of "Citizen Scientists"—individuals affected by lung cancer, including patients, caregivers, and loved ones who play a meaningful role in shaping future patient-centered comparative effectiveness research (CER), which is research that compares the benefits and harms of different healthcare options (e.g., medical treatments, services) to generate evidence that empowers patients, caregivers and other stakeholders to make more informed healthcare decisions.

"This program reimagines the role of patients and caregivers in the CER ecosystem," said Bellinda King-Kallimanis. "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."

Over the course of the two-year project, LUNGevity will train three cohorts—totaling 18–22 Citizen Scientists—using a highly immersive, experiential model grounded in adult learning theory. Participants will gain hands-on exposure to key aspects of research such as ethics, data analysis, and patient-centered CER study design. They will also be mentored by Citizen Scientists from previous cohorts and supported by a multidisciplinary advisory board that includes clinicians, researchers, advocates, and survivors.

A central feature of the initiative is the development of an open-source Citizen Scientist Training Playbook. This playbook will provide a flexible, replicable framework for other organizations seeking to engage patient communities in meaningful, inclusive research collaborations. The playbook will be made freely available on LUNGevity's website and promoted through a national awareness campaign.

"PCORI's support underscores the importance of inclusive engagement in research," said Upal Basu Roy, PhD, MPH, LUNGevity's executive director of Research. "This program will help build a pipeline of community leaders who can advocate for research that truly centers on the voices of those living with lung cancer."

Applications for the first cohort will open early August 2025, with special emphasis on intergenerational and multicultural participation. Graduates of the program will be positioned to contribute as research advisors, reviewers, and advocates across the cancer research ecosystem, ensuring that future studies better reflect patient priorities.

For more information, visit www.lungevity.org or contact [email protected].

If you are interested or know someone who may be interested, please email [email protected] to get more information.

The project is part of a portfolio of projects funded by PCORI. PCORI is a nonprofit organization with a mission to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information that is needed to make better-informed health care decisions. 

About LUNGevity Foundation

LUNGevity, the nation's leading lung cancer organization, is transforming what it means to be diagnosed and live with lung cancer. LUNGevity seeks to make an immediate impact on quality of life and survivorship for everyone touched by the disease—while promoting health equity by addressing disparities throughout the care continuum.

• Through research, we use an innovative and holistic approach to finding lung cancer earlier when it is most treatable; advance research into new treatments so people may live longer and better; and ensure a diverse, vital pipeline of investigators for the future of the lung cancer field.
• Through advocacy, we foster groundbreaking collaborations to ensure all people have access to screening, biomarker testing, and treatment breakthroughs.
• Through community, we educate, support, and connect people affected by lung cancer so that they can get the best healthcare and live longer and better lives.

Comprehensive resources include a medically vetted and patient-centric website, Patient Gateways for specific types of lung cancer, a toll-free HELPLine for personalized support, international survivor conferences, and tools to find a clinical trial. All these programs are designed to help us achieve our vision—a world where no one dies of lung cancer. LUNGevity Foundation is proud to be a four-star Charity Navigator organization.

About Lung Cancer in the US

• About 1 in 18 Americans will be diagnosed with lung cancer in their lifetime.
• More than 234,000 people in the US will be diagnosed with lung cancer this year, with a new diagnosis every 2.2 minutes.
• It is estimated that close to 65% of all new lung cancer diagnoses are among people with no tobacco exposure or only past tobacco exposure.
• More lives are lost to lung cancer than to the next two deadliest cancers (colorectal and pancreatic) combined.
• Only 27% of all people diagnosed with lung cancer will survive 5 years or more, but if it's caught before it spreads, the chance of 5-year survival improves to 64%.

SOURCE LUNGevity Foundation