E-health surfers should proceed with caution

A study of online health data weighs the accuracy and usefulness of the millions of pages of information that patients could uncover via the Internet.

By Stephanie Stapleton, amednews staff. June 11, 2001.

Washington -- An estimated 100 million Americans go online in search of health information, and 70% say what they find influences the decisions they make about their well-being.

Although the information their Web searches garner is generally accurate, it is also often incomplete and hard to understand, according to a study conducted by Rand and published in the May 23/30 issue of the Journal of the American Medical Association. The full report is available at Rand's Web site (http://www.rand.org/publications/documents/interneteval/) and also at the California HealthCare Foundation Web site (http://ehealth.chcf.org/).

"The Internet has moved from early childhood to awkward adolescence," said Sam Karp, the chief information officer of the California HealthCare Foundation, which commissioned the RAND report. "It has increased its scope and reach, but is still not mature enough to be reliable."

The study, which analyzed information found on both English- and Spanish-language Web sites regarding four common medical conditions -- breast cancer, depression, childhood asthma and obesity -- is the most comprehensive evaluation to date of the quality, accessibility and readability of the data found on millions of pages and thousands of Web sites in the e-health universe.

The optimistic predictions are that consumers will have ready access to good information that will motivate them to become more involved in their health care, said Gretchen Berland, MD, a RAND analyst and the study's lead author. But others worry that information may be incomprehensible, inaccurate and misleading. Thus, she said, the study sought to determine exactly what consumers are likely to find when they search the Web.

It also lays out key recommendations designed to maximize the usefulness of what this emerging frontier has to offer. For physicians, much of the challenge has to do with "engaging their patients on this issue," said Ann Monroe, who directs the foundation's quality initiative.

This step could involve working with patients who use the Internet to determine which sources are balanced and accurate. Physicians also might want to recommend sites to patients. In addition, doctors should be prepared for patients who are confused by difficult-to-understand or contradictory information uncovered on the Web. Overall, the report also encourages physicians as well as patients to be skeptical of sites that are not well-known or government-sponsored, since many are created and maintained for commercial reasons.

Specific findings

"The Internet ... has tremendous potential as an information resource for patients and health care providers alike," said Dr. Berland, also a Robert Wood Johnson Clinical Scholar at the University of California at Los Angeles. "This research provides guidance both on how to use what is available and on the changes needed to make the information better and more reliable," she added.

The study evaluated 10 English-language and four Spanish-language search engines. Each engine found very different links -- demonstrating first that no single path will offer a comprehensive result. In addition, less than one-quarter of links led to relevant content.

The analysis also developed a framework by which to judge the quality of coverage sites offered. A group of clinical experts and patient advocates developed a set of elements for each of the four conditions studied. These elements represented the basic information that consumers should be able to locate. However, about 25% of these clinical elements were not covered at all by the English-language sites and 53% were not covered by the Spanish-language Web sites.

For instance, only a few sites in either language indicated that a woman with a persistent breast mass and a negative mammogram usually needs further evaluation. In addition, although the accuracy of information presented was fairly high, many sites contained contradictory information.

Finally, the study showed that many patients may not be able to read the information they find. Nearly half of adults in the United States have a literacy level at eighth grade or below, according to recent reports. But all English-language sites and 86% of Spanish-language sites required a high school level of reading ability or better.