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First published October 12, 2005 as JAMIA PrePrint; doi:10.1197/jamia.M1761
Journal of the American Medical Informatics Association 2006;13(1):24-29
© 2006 American Medical Informatics Association

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Submitted on December 7, 2004
Accepted on August 16, 2005

A Case for Developing an Open-source First-Generation Consumer Health Vocabulary

Qing T. Zeng PhD1* and Tony Tse PhD2

Affiliation of the authors: 1 Department of Radiology, Decision Systems Group, Brigham and Women's Hospital, Harvard Medical School, Boston, MA; 2 Lister Hill National Center for Biomedical Communications, National Library of Medicine, National Institutes of Health, Department of Health and Human Services, Bethesda, MD

* To whom correspondence should be addressed.

Lay persons (consumers) often have difficulty finding, understanding, and acting on health information due to gaps in their domain knowledge. Ideally, consumer health vocabularies (CHVs) would reflect the different ways consumers express and think about health topics, helping to bridge this vocabulary gap. However, despite the recent research on mismatches between consumer and professional language (e.g., lexical, semantic, and explanatory), there have been few systematic efforts to develop and evaluate CHVs. This paper presents the point of view that CHV development is practical and necessary for extending research on informatics-based tools to facilitate consumer health information seeking, retrieval, and understanding. In support of the view, we briefly describe experiment with a distributed, bottom-up approach for (1) exploring the relationship between common consumer health expressions and professional concepts and (2) developing an open-access, preliminary (draft) first-generation CHV. While recognizing the limitations of the approach (e.g., not addressing psychosocial and cultural factors), we suggest that such exploratory research and development will yield insights into the nature of consumer health expressions and assist developers in creating tools and applications to support consumer health information seeking.




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