Patient experience data
Patient experience data includes data that provide information about patients’ experiences with a disease or condition. Patient experience data can be interpreted as information that captures patients’ experiences, perspectives, needs, and priorities related to (but not limited to): 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.
U.S. Food and Drug Administration (FDA) Patient-Focused Drug Development Glossary
U.S. Food and Drug Administration (FDA) to Collect Patient Experience Data [2018 published article]