Lived experience experts: a name created by us for us

• Published in: Expert review of hematology Vol. 16; no. sup1; p. 7
• Main Authors: Vázquez, Esmeralda, Kim, Michelle, Santaella, Maria E
• Format: Journal Article
• Language: English
• Published: England 15.03.2023
• Subjects: Family; Hematologic Diseases; Hematology - trends; Humans; Community-based participatory research; Lived experience expert; Patient-centered outcomes research; Patient participation; Research; Patient empowerment; National Hemophilia Foundation; Subject matter expert

Plain Language SummaryPeople affected by a medical disorder, usually called patients, develop a very special expertise by living with it every day. They know, better than anyone else, how it affects their lives, what they go through to get a diagnosis and treatment, how treatments affect them, how s...