OAKLAND, Calif. May 23 -- Finding answers to important health questions using Internet search engines and simple search terms is difficult at best. And while the information consumers do find on Web sites is generally accurate, it is usually incomplete and hard for many readers to understand, according to a report featured in the May 23 issue of the Journal of the American Medical Association (JAMA).

Recent surveys indicate that almost 100 million Americans go online in search of health information; 70% of them say that what they find influences treatment decisions.

The study, commissioned by the California HealthCare Foundation (CHCF) and conducted by RAND, is the most comprehensive evaluation to date of the quality, accessibility, and readability of the data in a vast, rapidly expanding e-health universe that now numbers millions of Web pages and thousands of sites. The study is also the first to analyze both English- and Spanish-language Web sites and search engines. Research focused on information about four common medical conditions -- breast cancer, childhood asthma, depression, and obesity.

"We know that the Internet is revolutionizing the availability of health information for consumers. The study suggests that there are lots of good things going on, and also lots of room for improvement," said Mark D. Smith, MD, MBA, president and CEO of the California HealthCare Foundation.

"The Internet is still in its formative stages and has tremendous potential as an information resource for patients and health care providers alike. This research provides guidance both on how to use what is available on the Internet now and on the changes needed to make the information better and more reliable," said the report's lead author, RAND analyst Gretchen Berland, MD.

KEY FINDINGS

1. The study found that answers to important health questions are often incomplete. Working with nationally recognized clinical experts and patient advocates, the researchers established the basic elements of what consumers should know about each of the four conditions and compared those with the information on 18 English-language and seven Spanish-language sites.
   • On average, about 25% of those clinical elements were not covered at all by the English-language sites and 53% were not covered by the Spanish-language Web sites.
     
     • For example, only a few sites in either language indicated that a woman with a persistent breast mass and a negative mammogram usually needs further evaluation.
     • Less than half of the Spanish-language materials explained that mastectomy and lumpectomy plus radiation are equivalent treatments for early-stage breast cancer.
     • One in five English-language sites provided complete and accurate information about managing the initial symptoms of a severe asthma episode.
   • Although the accuracy of information presented was fairly high, many of the sites contained contradictory information.
     • A childhood asthma Web site reported in one place that using inhaled steroids does not stunt growth in children. Elsewhere it reported that using inhaled steroids does stunt growth in children.
     • Conflicting information regarding depression most often concerned methods of treatment, while conflicting information pertaining to breast cancer concerned diagnosis.

2. The research showed that consumers may encounter a lot of irrelevant information when using search engines and simple search terms. The study examined 10 English-language and four Spanish-language search engines.
   • When employing English search engines, Internet users have a one in five chance of finding relevant information from the first page of results.
   • Consumers using Spanish search engines have a one in nine chance of finding relevant material.

3. The study showed that many users may not be able to read the information they find. According to a recent study of literacy in the United States, nearly half of all adults read at an eighth-grade level or below. However, all of the English-language sites and 86% of Spanish-language sites required a high-school level of reading ability or better.

"The Internet should be a tool that anybody can use, but this shows that a good portion of its health resources may be out of reach for some," said Berland. "As the online population becomes more representative of the larger U.S. population in terms of race, age, income and education, the content available on the Internet should correspond to those changes." Berland is a Robert Wood Johnson clinical scholar at UCLA as well as a RAND researcher.

In addition to today's JAMA article, RAND and CHCF have released the full report, which elaborates on many of the article's findings and makes recommendations for consumers, consumer advocacy groups, health care providers, health Web sites, and policymakers. Among the recommendations, consumers are advised to:

1. Allow ample time to search for answers to your questions.
2. Be aware that a single site will probably not provide a comprehensive picture of what you need to know about a condition. As many as four to six sites must often be visited.
3. Discuss information you find on the Internet with your health care provider before you use it to make a treatment decision.

"This study establishes a benchmark against which to measure improvement. The findings provide a call for consumers to proceed with some caution when using the Internet, for health care providers to understand and consult with their patients about what they are reading online, and for ehealth industry leaders to become more involved in monitoring content," Smith said.

The 24-page Report Summary with recommendations is available for download at CHCF's Web site http://ehealth.chcf.org. The 96-page Complete Study is available at http://ehealth.chcf.org and http://www.rand.org/publications/documents/interneteval. For a copy of the JAMA article, see http://jama.ama-assn.org/issues/v285n20/ffull/joc02274.html or call RAND's Public Information Office (310 451-6913).

The California HealthCare Foundation (CHCF) is an independent health care philanthropy created in 1996 and committed to making the health care system work better for the people of California. This study is one in a series of activities CHCF has undertaken to enhance the role the Internet can play in improving health care. Its January 2000 Report on Privacy Policies and Practices of Health Web Sites led to improvements in privacy practices across the e-health industry.

RAND is a nonprofit institution that helps improve policy and decision making through research and analysis.