"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.
OBJECTIVE
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.


METHODS
MedlinePlus documents regarding maternal serum screening (6), prostate-specific antigen testing (6), and screening mammography (6) were analyzed.


METHODS
The content of the documents was analyzed.


RESULTS
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.


CONCLUSIONS
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.
Burkell
Jacquelyn
J
Faculty of Information and Media Studies, Middlesex College, University of Western Ontario London, Ontario N6A 5B7 Canada. jburkell@uwo.ca
Campbell
D Grant
DG
D002170:Canada; D003657:Decision Making; D004314:Down Syndrome / Q000175:diagnosis; D006801:Humans; D033181:Information Dissemination; D007255:Information Services / Q000592:standards*; D016247:Information Storage and Retrieval / Q000592:standards; D007258:Informed Consent / Q000592:standards*; D020407:Internet / Q000592:standards*; D008327:Mammography / Q000592:standards; D008403:Mass Screening / Q000592:standards; D010353:Patient Education as Topic / Q000592:standards*; D011237:Predictive Value of Tests; D011296:Prenatal Diagnosis / Q000592:standards; D017430:Prostate-Specific Antigen / Q000097:blood; D035501:Uncertainty
D017430:Prostate-Specific Antigen