Term identification methods for consumer health vocabulary development.

BACKGROUND: The development of consumer health information applications such as health education websites has motivated the research on consumer health vocabulary (CHV). Term identification is a critical task in vocabulary development. Because of the heterogeneity and ambiguity of consumer expressions, term identification for CHV is more challenging than for professional health vocabularies. OBJECTIVE: For the development of a CHV, we explored several term identification methods, including collaborative human review and automated term recognition methods. METHODS: A set of criteria was established to ensure consistency in the collaborative review, which analyzed 1893 strings. Using the results from the human review, we tested two automated methods-C-value formula and a logistic regression model. RESULTS: The study identified 753 consumer terms and found the logistic regression model to be highly effective for CHV term identification (area under the receiver operating characteristic curve = 95.5%). CONCLUSIONS: The collaborative human review and logistic regression methods were effective for identifying terms for CHV development.

Assessing consumer health vocabulary familiarity: an exploratory study.

BACKGROUND: Accurate assessment of the difficulty of consumer health texts is a prerequisite for improving readability. General purpose readability formulas based primarily on word length are not well suited for the health domain, where short technical terms may be unfamiliar to consumers. To address this need, we previously developed a regression model for predicting "average familiarity" with consumer health vocabulary (CHV) terms. OBJECTIVE: The primary goal was to evaluate the ability of the CHV term familiarity model to predict (1) surface-level familiarity of health-related terms and (2) understanding of the underlying meaning (concept familiarity) among actual consumers. Secondary goals involved exploring the effect of demographic factors (eg, health literacy) on surface-level and concept-level familiarity and describing the relationship between the two levels of familiarity. METHODS: Survey instruments for assessing surface-level familiarity (45 items) and concept-level familiarity (15 items) were developed. All participants also completed a demographic survey and a standardized health literacy assessment, S-TOFHLA. RESULTS: Based on surveys completed by 52 consumers, linear regression suggests that predicted CHV term familiarity is a statistically significantly predictor (P < .001) of participants' surface-level and concept-level familiarity performance. Health literacy was a statistically significant predictor of surface-level familiarity scores (P < .001); its effect on concept-level familiarity scores warrants further investigation (P = 0.06). Educational level was not a significant predictor of either type of familiarity. Participant scores indicated that conceptualization lagged behind recognition, especially for terms predicted as "likely to be familiar" (P = .006). CONCLUSIONS: This exploratory study suggests that the CHV term familiarity model is predictive of consumer recognition and understanding of terms in the health domain. Potential uses of such a model include readability formulas tailored to the consumer health domain and tools to "translate" professional medical documents into text that is more accessible to consumers. The study also highlights the usefulness of distinguishing between surface-level term familiarity and deeper concept understanding and presents one method for assessing familiarity at each level.

Relating consumer knowledge of health terms and health concepts.

In consumer health vocabulary (CHV) research, term familiarity serves as a proxy for comprehension. To date, CHV studies have not explicitly addressed the relationship between recognizing and understanding terms. We pilot-tested a survey to assess knowledge of terms among consumers (n=52) at two levels: 1) surface-level familiarity and 2) the underlying meaning or "gist." Preliminary results suggest that familiarity exceeds understanding for "common" CHV terms, but are similar for "less common" terms.

Exploring lexical forms: first-generation consumer health vocabularies.

The Consumer Health Vocabulary Initiative (http://consumerhealthvocab.org/) is a multi-disciplinary effort to facilitate the research and development of consumer health vocabularies (CHVs). We are currently investigating different types of lexical forms used in lay expressions (i.e. words and phrases): consumer-friendly display forms, consumer forms that have different semantics in professional and lay contexts and consumer forms not covered by professional health terminologies. The next step will address lay and professional conceptual differences in second-generation CHVs.

Identifying consumer-friendly display (CFD) names for health concepts.

We have developed a systematic methodology using corpus-based text analysis followed by human review to assign "consumer-friendly display (CFD) names" to medical concepts from the National Library of Medicine (NLM) Unified Medical Language System (UMLS) Metathesaurus. Using NLM MedlinePlus queries as a corpus of consumer expressions and a collaborative Web-based tool to facilitate review, we analyzed 425 frequently occurring concepts. As a preliminary test of our method, we evaluated 34 ana-lyzed concepts and their CFD names, using a questionnaire modeled on standard reading assessments. The initial results that consumers (n=10) are more likely to understand and recognize CFD names than alternate labels suggest that the approach is useful in the development of consumer health vocabularies for displaying understandable health information.

A web application to support consumer health vocabulary development.

We describe a Web application that supports collaborative development of a consumer health vocabulary. It performs text analyses and enables distributed human review. It also provides on-the-fly summary reports and facilitates the generation of a final vocabulary based on the results of the review.