Consumer language, patient language, and thesauri: a review of the literature

Online social networking sites are web services in which users create public or semipublic profiles and connect to build online communities, finding like-minded people through self-labeled personal attributes including ethnicity, leisure interests, political beliefs, and, increasingly, health status. Thirty-nine percent of patients in the United States identified themselves as users of social networks in a recent survey. "Tags," user-generated descriptors functioning as labels for user-generated content, are increasingly important to social networking, and the language used by patients is thus becoming important for knowledge representation in these systems. However, patient language poses considerable challenges for health communication and networking. How have information systems traditionally incorporated these languages in their controlled vocabularies and thesauri? How do system builders know what consumers and patients say?

This comprehensive review of the literature of health care (PubMed MEDLINE, CINAHL), library science, and information science (Library and Information Science and Technology Abstracts, Library and Information Science Abstracts, and Library Literature) examines the research domains in which consumer and patient language has been explored.

Consumer contributions to controlled vocabulary appear to be seriously under-researched inside and outside of health care.

The author reflects on the implications of these findings for online social networks devoted to patients and the patient experience.