Exploring Medical Expressions Used by Consumers and the Media: An Emerging View of Consumer Health Vocabularies

Healthcare consumers often have difficulty expressing and understanding medical concepts. The goal of this study is to identify and characterize medical expressions or "terms" (linguistic forms and associated concepts) used by consumers and health mediators. In particular, these terms were characterized according to the degree to which they mapped to professional medical vocabularies. Lay participants identified approximately 100,000 term tokens from online discussion forum postings and print media articles. Of the over 81,000 extracted term tokens reviewed, more than 75% were mapped as synonyms or quasi-synonyms to the Unified Medical Language System (UMLS) Metathesaurus. While 80% conceptual overlap was found between closely mapped lay (consumer and mediator) and technical (professional) medical terms, about half of these overlapping concepts contained lay forms different from technical forms. This study raises questions about the nature of consumer health vocabularies that we believe have theoretical and practical implications for bridging the medical vocabulary gap between consumers and professionals.