What does this mean? How web-based consumer health information fails to support information seeking in the pursuit of informed consent for screening test decisions

• Published in: Journal of the Medical Library Association Vol. 93; no. 3; pp. 363 - 373
• Main Authors: BURKELL, Jacquelyn, CAMPBELL, D. Grant
• Format: Journal Article
• Language: English
• Published: Chicago, IL Medical Library Association 01.07.2005; University Library System, University of Pittsburgh
• Subjects: Canada; Cancer; Consumer education; Consumer health information; Curriculum subjects: programmes and methods; Decision Making; Down Syndrome - diagnosis; Educational sciences; Electronic documents; Evaluation; Humans; Information Dissemination; Information Services - standards; Information Storage and Retrieval - standards; Informed Consent - standards; Internet; Internet - standards; Mammography - standards; Mass Screening - standards; Medical and paramedical education; Medical screening; Online information retrieval; Patient Education as Topic - standards; Performance measures; Predictive Value of Tests; Prenatal Diagnosis - standards; Prostate-Specific Antigen - blood; Public health; Screening; Teaching methods; Uncertainty; USA; Web sites; Canada; Medicine; Information Seeking; Diagnosis; Internet; Test
• ISSN: 1536-5050; 1558-9439

The authors analyzed online consumer health information related to screening tests to see how well this information meets known standards for supporting the understanding of test uncertainty. MedlinePlus documents regarding maternal serum screening (6), prostate-specific antigen testing (6), and screening mammography (6) were analyzed. The content of the documents was analyzed. This study showed that most sites conscientiously report that tests are less than 100% accurate, but few provide important details about the level of uncertainty associated with test results. In particular, few resources give information about the predictive value of screening tests and have little mention of the fact that predictive value is influenced by the a priori likelihood of having the condition. These results suggest that online consumer health information does not adequately support decisions about medical screening. We suggest a potential solution to the problem: metadata harvesting coupled with optimized presentation techniques to format personalized information about screening tests. Using these techniques, the empowerment of personal choice in matters of health decisions could become the de facto standard.