In their own words? A terminological analysis of e-mail to a cancer information service

OBJECTIVE: To better understand the terms used by consumers to describe their health information needs and determine if this "consumer terminology"differs from those used by health care professionals. METHODS: Features and findings identified in 139 e-mail messages to the University of Pittsburgh Cancer Institute's Cancer Information and Referral Service were coded and matched against the 2001 Unified Medical Language System Metathesaurus. RESULTS: 504 unique terms were identified. 185 (36%) were exact matches to concepts in the 2001 UMLS Metathesaurus (MTH). 179 (35%) were partial string matches; 119 (24%) were known synonyms for MTH concepts; and 2 (<1%) were lexical variants. Only 19,or 4% of the total terms, were not found to be present in the 2001 MT1H. CONCLUSION: 96% of the clinical findings and features mentioned in e-mail by correspondents who did not self-identify as healthcare professionals were described using terms from controlled healthcare terminologies. The notion of a paradigmatic "consumer" who uses a particular vocabulary specific to her "consumer" status may be ill-founded.