New study on quality of on-line health information advises consumer to "click with care"

Oakland 23 May 2001The California HealthCare Foundation (CHCF) has commissioned a study on the quality of health information on the Internet, conducted by RAND Health. Finding answers to important health questions using Internet search engines and simple search terms is far more difficult than one might expect. While the information that consumers find on Web sites is generally accurate, it is usually incomplete and hard for many readers to understand, according to the report featured in the May 23/30 issue of the Journal of the American Medical Association (JAMA).

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Recent surveys indicate that almost 100 million Americans go on-line in search of health-related information. Over 70 percent of these people claim that health information discovered via the Internet has influenced their decision about medical treatment. The CHCF study performed by RAND, is the most comprehensive evaluation to date of the quality, accessibility, and readability of the data in a vast and rapidly expanding e-health universe that now numbers millions of Web pages and thousands of sites.

The study is equally the first to analyse both English- and Spanish-language Web sites and search engines. Research focused on information about four common medical conditions, being breast cancer, childhood asthma, obesity, and depression. "We realise the Web is revolutionising the availability of health information for consumers. The study suggests that there are lots of good things going on, but also that a lot of room for improvement has to be made", stated Mark D. Smith, MD, MBA, president and CEO of the California HealthCare Foundation.

"The Web 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 now available on the Internet and on the changes that are needed to make the information better and more reliable", commented the report's lead author, RAND analyst Gretchen Berland, MD.

The CHCF study found that answers to important health questions are often incomplete. Working with nationally recognised clinical experts and patient advocates, the researchers established the basic elements of the knowledge that consumers should have about each of the four conditions and compared those with the information on eighteen English-language and seven Spanish-language sites.

On average, about 25 percent of those clinical elements were not covered at all by the English-language sites whereas 53 percent were not covered by the Spanish-language Web sites. Let's just give a couple of examples. Only a few sites in either language indicated that women with a persistent breast mass and a negative mammogram usually need further evaluation. Less than half of the Spanish-language materials explained mastectomy and lumpectomy plus radiation are equivalent treatments for early-stage breast cancer. One in five English-language sites provided complete and accurate information on 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. As such, 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.

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

The study demonstrated that a large number of 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. All of the English-language sites and 86 percent of Spanish-language sites however required a high-school level of reading ability or better.

"The Internet should be a tool for anybody to use, but this shows that a good portion of its health resources may be out of reach for some", explained Gretchen Berland. "As the on-line population becomes more representative of the larger United States population in terms of race, age, income and education, the content available on the Web should correspond to those changes." Mrs. Berland is a Robert Wood Johnson clinical scholar at the University of California Los Angeles (UCLA), as well as a RAND researcher.

In addition to the recent 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 policy makers. Among the recommendations, consumers are advised to allow ample time to search for answers to their questions. Consumers should be aware that one single site will probably not provide a comprehensive picture of what they need to know about a certain condition. As many as four to six sites must often be visited. They also should discuss information found on the Internet with their health care provider before they use it to make a treatment decision.

Dr. Mark Smith added: "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 on-line, and for the e-health industry to become more involved in monitoring content."

The RAND research institution analysis involved a panel of 34 physicians who evaluated English- and Spanish-language sites from July to December last year. RAND is a non-profit institution which helps improve policy and decision making through research and analysis. The California HealthCare Foundation 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. The 24-page Click with Care report summary with recommendations is available for download at the CHCF Web site. The 96-page complete study can be found at the RAND Web site.


Leslie Versweyveld

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