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

Patient experience data (PED) is information collected with the intent to gain insight into patients’ lived experiences with a disease or condition. The Food and Drug Administration’s Patient Focused Drug Development approach considers PED to be any of the following information types: 1) the symptoms of their condition and its natural history; 2) the impact of the conditions on their functioning and quality of life; 3) their experience with treatments; 4) input on which outcomes are important to them; 5) patient preferences for outcomes and treatments; and 6) the relative importance of any issue as defined by patients.   

Once collected, PED be used in other processes like value assessments, health technology assessments, clinical trial endpoints, real-world evidence, and patient-centered health care delivery.  

Early patient engagement is critical and should be integrated in all aspects of PED collection for health care decision-making. Over the past several years, the National Health Council (NHC) has developed resources, evidence-based tools, and rubrics to support patient organizations, patient advocates, and their partners in promoting the use of PED in all areas of health care.   

Explore our patient engagement assets to learn more about how your organization can support the use of PED to improve patient outcomes. Our Patient Engagement Tools and Rubrics include many resources such as: 

• Patient Experience Mapping Toolbox: The Patient Experience Mapping Toolbox is a set of publicly available resources to help researchers engage and document patients’ experiences before getting a diagnosis, while getting a diagnosis, and living with a diagnosis.

• Patient-Centered Core Impact Sets: A PC-CIS is a standardized, patient-derived and patient-prioritized list of the most important impacts a disease and/or its treatments have on a patient’s health and daily life, and that of their family and caregivers.

• Patient Experience Data Dossier: 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.  

The NHC is well positioned to ensure our membership, patients, and their caregivers are prepared and equipped to engage in leveraging PED is to improve health outcomes.   

Interested in learning more about how engaging patients can drive innovation in medicine, MedTech, and AI? Join the NHC for the 2025 Science of Patient Engagement Symposium on May 7–8. Registration opens on Feb. 20.