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Lived experience experts: a name created by us for us.

Esmeralda Vázquez1,2, Michelle Kim3,4, Maria E Santaella2

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Summary
This summary is machine-generated.

Patients and family members living with disorders possess unique expertise. Recognizing them as lived experience experts (LEEs) enhances research by including their valuable insights in all stages, strengthening scientific endeavors.

Area of Science:

  • Patient and Community Engagement in Research
  • Rare Disease Research
  • Health Services Research

Background:

Keywords:
Community-based participatory researchLived experience expertNational Hemophilia FoundationPatient empowermentPatient participationPatient-centered outcomes researchResearchSubject matter expert

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  • Patients and their families develop unique expertise through daily life with medical conditions.
  • Traditionally, patients are viewed as research subjects rather than active contributors.
  • The National Hemophilia Foundation's initiatives highlighted the need to formally recognize patient expertise.