By: Omar A. Escontrías, DrPH, MPH, Senior Vice President, Equity, Research and Programs

Since Fall 2022, the National Health Council (NHC) and Applied Patient Experience, LLC (APX), have been critical partners in hosting a series of workshops with patient organizations and conducting multistakeholder interviews to socialize the utility and application of a Patient Experience Data (PED) dossier, including its development across various disease categories. Patient groups see its potential value in opening the door to more targeted, informed discussions between patient groups and decision-makers.

The PED dossier could become an important tool for patient organizations to consolidate evidence from various sources, including clinical and economic aspects of disease, as well as their perspectives on available treatments. A PED dossier template would describe a consistent format (e.g., expected headers and content). Additionally, researchers could quickly become oriented to a holistic understanding of a disease. The dossier model and disease-specific dossiers would be living documents updated over time, with patient organizations being the lead owners of these data. Furthermore, representatives from patient organizations believe that a dossier would provide an opportunity to “put evidence in context” of patients’ lived experiences, for example, by describing caveats to current understanding of disease (e.g., representativeness of research to date, known unknowns).

The NHC and APX have recently conducted additional patient workshops to solicit feedback on the various elements and components of a PED dossier template, as well as understanding the sustainability and governance to the implementation of such. Key findings are underway. Thematic analyses of these workshops will help inform the creation of a demonstration project that will pilot the concept of a PED dossier with key disease specific patient advocacy organizations across disease areas. Current exploration of PED dossier demonstration projects is underway for 2024.

The NHC and APX extend their gratitude to PhRMA and the National Pharmaceutical Council for their support of this project.