Leveraging cancer registries, clinical trials, and community partnerships to address disparities in pediatric, adolescent, and young adult lymphoma
Justine Kahn
MDColumbia University Medical Center
Project Term: July 1, 2023 - June 30, 2028
I aim to identify drivers of pediatric and adolescent/young adult lymphoma disparities so that targeted health equity interventions can be developed. Integration of large datasets, systematic collection of social determinants data in clinical trials, and collaboration with patient advocates will: a) create new population-based resources to study lymphoma outcomes; b) establish a novel framework for equity research in lymphoma clinical trials; and c) identify real-world targets for intervention.
My research is aimed at understanding why, despite continued improvements in Hodgkin lymphoma outcomes, socially vulnerable children, adolescents, and young adults (AYA) continue to trail behind on survival curves. I propose that these disparities result from individual, socioeconomic, and environmental characteristics of minority groups such as poor living conditions, unstable housing, and lack of access to quality education or healthcare. These factors, known as "social determinants of health," are increasingly recognized as important drivers of cancer outcome disparities, however work is needed to understand exactly how. As a clinical pediatric oncologist, I am constantly considering what we can improve in our patients’ lives, in the doctor’s office, and in the community to ensure that all have an equal chance of survival. As a clinical researcher I use large datasets to help clarify some of the inequities that I observe in my everyday practice. More specifically, my work, which is aimed at understanding drivers of disparities, has three main components. First, I am conducting a series of studies that use existing data (from clinical trials, hospitals, and cancer registries) to report the extent of disparities in children and AYAs with Hodgkin lymphoma. The data used in these studies, while representative of real-world patients, often lacks details about an individual’s social circumstances, which makes it difficult to take a deep dive into understanding why certain populations suffer worse survival. With this, the second part of my research uses the clinical trial infrastructure to collect social determinants data from all patients enrolling on Hodgkin lymphoma trials across the U.S. Clinical trials are ideal for this kind of work because they are built specifically to collect patient, treatment, and outcome data on every single participant. Collecting these data provides desperately needed information about how social factors impact survival, while simultaneously allowing us to identify and address a patient’s social needs in real-time. The final component of my research includes collaborating with lymphoma survivors and advocates to understand barriers and facilitators to accessing care from diagnosis through long-term follow-up. Eventually, findings from these projects will inform interventions at individual, community, consortium, and national levels to improve care and outcomes for our most vulnerable pediatric and AYA lymphoma populations.