OBJECTIVES: Leveraging patient experience data (PED) to understand the impacts disease and/or treatment have on health and daily life is the first step to understanding what is important to patients. However, there is no systematic way to categorize and report on impacts. We tested use of the National Health Council’s (NHC) Patient-Centered Core Impact Set (PC-CIS) taxonomy to systematically document impacts reported in PED.

METHODS: Impacts were derived from two PED sources: A random sample (n=15) of publicly available Voice-of-the-Patient reports (through June 2022) were abstracted for reported impacts, which were categorized using the taxonomy. Taxonomy categories and subcategories were added/refined as needed. Then, qualitative data were collected through in-depth, concept elicitation interviews (n=24) on patients’ experiences with asthma, colorectal cancer, and multiple sclerosis. Transcripts were analyzed for thematically derived impacts by condition. Impacts were categorized with further refinement of taxonomy categories and subcategories. Content validity was confirmed through review with patient-organization representatives.

RESULTS: Impacts commonly reported as condition/treatment signs and symptoms were well aligned with the original taxonomy. Subcategories needed to be added/revised (i.e., “diet” and “home modifications” were added to “treatment”; “resource use” was revised to encompass “support from others”, “healthcare resource use”, “employment benefits”, and “insurance coverage”; “costs” included as separate a category with respective subcategories of “healthcare costs paid by others”, “out-of-pocket costs”, “non-healthcare costs paid by others”). Taxonomy modifying factors were revised and expanded.

CONCLUSIONS: NHC’s PC-CIS taxonomy served as a sound guide for categorizing a wide range of patient-experience impact data in three conditions. The taxonomy required refinement and additions to capture more nuanced impacts. This study serves as a practical example of how the taxonomy can be further refined through practical use to enhance the tool and expand its use to improve standardization and alignment when collecting and categorizing impacts derived from PED.