Program builds pipeline of patients and caregivers trained to be directly involved in research
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 media@lungevity.org.
If you are interested or know someone who may be interested, please email CitizenScience@lungevity.org 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.
