SUSAN DENTZER: In the past year more than 60 million Americans are estimated to have gone on the Internet in search of health information. Breast cancer patient Pat Hodge was one.
PAT HODGE, Breast Cancer Patient: The Internet gives you so much more. You can be as inquisitive as long as you're awake. And there's no one that judges you on the questions that you ask or the searches that you do.
SUSAN DENTZER: Hodge says she went online before a visit to her doctor this week. She hoped to learn more about a new drug aimed at fighting recurrence of breast cancer.
PAT HODGE: I just went on to a regular search engine and typed the words "breast cancer drug," and I knew the name of the drug, FEMARA. And I actually got 1,060 references.
SUSAN DENTZER: Examples like this testify to the Internet's power as a tool for gathering information about health care. But a study published in the recent issue of the "Journal of the American Medical Association" suggests that the tool is far from perfect, and that it often yields information that isn't useful or complete enough for consumers. Ann Monroe is with the non- profit California Health Care Foundation, which funded the study.
ANN MONROE, California Health Care Foundation: We've all heard the term "caveat emptor"-- "let the buyer beware." There's "caveat lector," which is "let the reader beware." And I think in this case it's "caveat clickter." When you go to click on that Web site, you need to really remember that it is not going to be a substitute for talking with your provider.
SUSAN DENTZER: The JAMA study is the most comprehensive to date on the quality of health information available over the vast reaches of the Internet. Dr. Gretchen Berland of the California-based RAND Corporation was the lead author of the study.
DR. GRETCHEN BERLAND, RAND CORP.: One of the reasons that we decided to do this study was because despite, you know, millions of pages and thousands of Web sites out there, little was really known about the quality of health information on the Internet.
SUSAN DENTZER: So the RAND study tried to simulate what average consumers would find if searching the Internet for critical health information. First, Berland's team of researchers chose four conditions: Breast cancer, depression, childhood asthma and obesity. They then had trained searchers enter those terms into so-called Internet search engines, such as Google, Yahoo! and Alta Vista. And because roughly one-in-eight Americans is now of Hispanic origin, the team also used Spanish-language search engines, like Terespondo, to see how well the Internet worked for Spanish- speaking consumers. Berland says the volume of information produced was overwhelming.
DR. GRETCHEN BERLAND: Some of the search engines, if you type in "breast cancer," will offer you upwards of 950,000 possible sites that you might get taken to.
SUSAN DENTZER: And as anyone who's ever searched the Internet knows, these sites can be highly variable. There are government-sponsored sites, like those of the National Institutes of Health, carefully reviewed by top medical experts. There are also be commercial sites, some also expert-written or reviewed, but others produced by people with little or no medical expertise. Still others are sponsored by drug companies or other firms eager to sell products. And then there are sites sponsored by patient-advocacy organizations, or even individual Web sites posted by patients themselves. The RAND team applied a simple set of tests to determine whether the information contained in this huge variety of sites was really relevant for patients. A site was deemed relevant if it mentioned up to 40 key terms associated with a particular medical condition-- for example, "inhaler" for childhood asthma, or the drug "Tamoxifen" for breast cancer. The results weren't auspicious.
DR. GRETCHEN BERLAND: Using English-language search engines from start to finish, a user would have about a one-in- five chance of finding relevant content. On Spanish-language sites the odds are even worse. They have about a one-in-eight chance of finding health information on the Internet.
SUSAN DENTZER: The RAND team also focused further tests on a group of the most popular health Web sites, such as DrKoop.com and WebMD. Berland says that for each of the four disease conditions, a panel of experts drafted five to ten questions that they thought a good health Web site should answer.
DR. GRETCHEN BERLAND: A question that related to breast cancer screening that the breast cancer expert panels felt should be there was, "How often should I have regular mammograms?" "How... Do I need to have a regular mammogram if I don't have a family history of breast cancer?" So these were very... What the expert panels felt were very basic questions.
SUSAN DENTZER: What the RAND analysts found was both good news and bad. What information there was on the health Web sites was almost always accurate, but the problem was that it usually wasn't complete.
DR. GRETCHEN BERLAND: What we found was that on English-language sites, about a quarter of the time the topics that expert panelists felt were important to be addressed by a Web site, weren't there.
SUSAN DENTZER: Dr. Claudine Isaacs is a breast cancer specialist at Georgetown University Medical Center in Washington. She says some of the omissions on the Spanish sites in particular were startling. An example was not reporting comparisons of mastectomies and a procedure known as lumpectomy. In mastectomy, the entire breast and some surrounding tissue is removed; whereas in lumpectomy, only cancerous tissue is removed from the breast.
DR. CLAUDINE ISAACS, Georgetown University Medical Center: When they looked at some of the treatment options for newly diagnosed patients, they didn't indicate that lumpectomy with radiation was equivalent to mastectomy. That is a basic fact, one of the things that I would consider sort of, you know, one of the very basic facts about breast cancer and about breast cancer treatment. And the fact that it was omitted was certainly worrisome about the rest of the information that was included in the site.
SUSAN DENTZER: Berland acknowledges that the JAMA study itself isn't a perfect assessment of health information on the Internet.
DR. GRETCHEN BERLAND: The Internet is a moving target. It's a huge... I really think of the Internet as sort of this very fluid-moving organism. We took one slice in time.
SUSAN DENTZER: And in fact, officials at the top search engines and Web sites that the RAND researchers examined, say things have already changed since the study was undertaken last fall. Take the site ivillagehealth.com, which, until recently, was called allhealth.com. Site officials told us that they had already taken steps to improve the site's quality, such as having better-qualified experts review the information displayed. Meanwhile, various groups of search engines and health Web sites have already produced voluntary quality guidelines and ethics standards. The JAMA study may now encourage these to be more widely adopted.