Patients deserve evidence-based, high-value health care rooted in the most rigorous scientific methods. However, research practices that generate our current evidence base have historically excluded a number of communities and patient perspectives. This incomplete, and sometimes biased evidence base has limited effectiveness and applicability for diverse populations, and risks widening racial, ethnic, and other inequities. A foundational step in addressing health inequities, including asthma-related health inequities, is strengthening the evidence base so it includes diverse patients and their perspectives.
Asthma is the most common childhood disease but disproportionately affects communities and children of color. The direct causes of the disease are unknown. However, race and psychosocial stress are increasingly considered as additional drivers of the disease, which may better explain the disproportionate burden on children of color. To address asthma inequities, it is fundamental that research practices produce representative evidence based on the real-world experiences of the most affected communities, and that reporting of this evidence is transparent.
Given the shortcomings in our current evidence base, and given the persisting inequities among communities of color, scientists have adopted new approaches to increase diversity and include patient perspectives. The federal government created the Patient-Centered Outcomes Research Institute (PCORI) to address these limitations. PCORI funds research projects that conduct patient-centered outcomes research (PCOR), an approach that meaningfully involves patient voices in research and prioritizes diverse communities and subpopulations. Such an approach has great potential to advance health equity.
This report assesses PCORI’s asthma research portfolio and translates findings from six studies into health equity-focused policy recommendations. Our three key policy recommendations include stratifying research results by race, ethnicity, and gender to better identify health inequities; implementing community health worker interventions; and requiring qualitative data from parents in studies that focus on children. Read our report to learn about the research studies, their findings, their limitations, and their policy implications.