Academic journal article Journal of the Medical Library Association

"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

Academic journal article Journal of the Medical Library Association

"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

Article excerpt

Purpose: 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.

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

Methodology: 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.

Discussion/Conclusion: 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.

INTRODUCTION

On April 22, 1995, a subscriber to the sci.med newsgroup sent a message explaining that his friend had tested positive in a Down syndrome screening test and had subsequently gone for amniocentesis. His friend was worried, and the subscriber was looking for feedback on the benefits of the screening test. Among the responses he received were:

* a discussion on the ethics of terminating a pregnancy if the presence of Down syndrome was verified;

* a suggestion that the friend contact support groups on Down syndrome to reduce her fear of the condition through direct contact with those living with it; and

* a flame message arguing that the world does not need another Down syndrome child to "drag the world down to the lowest common level."

Lost in the discussion was the fact that the cutoff rate for testing positive in this case was 1 in 270: his friend's fetus had a 1 in 270 chance of having Down syndrome. In broader terms, it meant that there was an overwhelming likelihood that the friend's screening test had produced a false positive result. False positive screening test results are perfectly possible, and even expected, at least in low-risk populations, and screening tests can (and do) return false negative results. Unfortunately, individuals taking screening tests are rarely aware of this fact, and the consequences of their lack of knowledge can be tragic [1].

As the unfortunate sci.med subscriber learned, the anxiety surrounding screening tests can be intense and uninformed, and the demands on information provision regarding these tests are great indeed. This raises two important questions that are addressed in this paper. Are available resources sufficient to meet the information needs of consumers? If not, can methods be identified that will support the development and delivery of appropriate information?

BACKGROUND: INFORMATION, DECISIONS, AND SCREENING TESTS

Consumer health information should be designed primarily to empower consumers and to enable them to make informed decisions about their health and health care. Truly informed decision making requires that consumers understand complex aspects of health care options, including information about risk and benefit that is inherently difficult to grasp [2, 3]. Informed consent has been identified as a significant issue with respect to participating in screening programs designed to test large sectors of the population for relatively infrequent but serious health conditions, including genetic birth defects, breast cancer, prostate cancer, and HIV/AIDS [4, 5]. In general, it is challenging to develop information to support informed health care decision making because of the complexity of the information and the relatively low literacy levels of the general public to whom it must be presented [6]. …

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