Psychosomatics 44:100-103, April 2003
© 2003 The Academy of Psychosomatic Medicine
The Internet for Medical Information About Cancer: Help or Hindrance?
Scott C. Matthews, M.D.,
Alvaro Camacho, M.D.,
Paul J. Mills, Ph.D., and
Joel E. Dimsdale, M.D.
Received April 8, 2002; revision received June 24, 2002; accepted July 11, 2002. From the Department of Psychiatry, University of California, San Diego. Address reprint requests to Dr. Matthews, 727 Sapphire St. #106, San Diego, CA 92109; scmatthews{at}ucsd.edu (e-mail).
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ABSTRACT
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Objective: The authors tested a strategy for screening Internet sites to identify those that provide scientifically accurate information regarding complementary/alternative medicine treatments commonly used by cancer patients. Method: Separate Internet searches were conducted for three complementary/alternative medicine treatments: floressence, amalaki, and selenium. Sites (N=194) were assessed according to four criteria: availability of online purchasing, inclusion of patient testimonials, description of the treatment as a "cancer cure," and description of the treatment as "having no side effects." The presence of any of these criteria was considered a "red flag" denoting questionable scientific accuracy of the site. Sites were categorized based on the number of red flags. MEDLINE searches were performed and peer-reviewed literature used to determine the scientific accuracy of sites. Results: Over 90% of the sites for floressence and amalaki had at least one red flag. In these searches, sites with no red flags provided some scientifically accurate information, while sites with red flags provided a large amount of vague and inaccurate information. Less than one-quarter of sites for selenium had at least one red flag, and sites in this search generally provided scientifically accurate information, regardless of the number of red flags. Conclusions: There is a staggering amount of medical misinformation on the Internet. For cancer treatments that have not been rigorously studied, the red flag criteria offer a rapid way of screening Internet sites for likely scientific accuracy. It may be advisable for patients to avoid sites with one or more red flags.
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INTRODUCTION
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The Internet has become an important source of medical information. However, the quality of online information is quite variable. The Internet offers a great deal of information, although of questionable accuracy, regarding topics such as hallucinogens,1 and many sites are distinctly "partisan" in their promulgation of information about illicit drugs.2 The Internet has also become a source of information about how to commit suicide3 and how to obtain prescription drugs without seeing a physician. Thus, much of the medical online information is unregulated and of questionable accuracy.
Use of complementary/alternative medicine is common.4 However, many of the complementary/alternative medicine treatments, including most herbal medicines, have not been rigorously studied. Herbs contain active biological agents with potential side effects and drug-herb interactions. Patients with cancer and other life-threatening conditions often turn to complementary/alternative medicine for a variety of reasons,5 and a major source of their information is the Internet.
There have been numerous published reports evaluating the quality of Internet information. Eysenbach et al.6 recently concluded that, because of methodological differences, results and conclusions on the quality of health-related Web sites vary widely. Fundamentally, it remains unclear how to best measure the quality of online information. Prior investigators have used criteria such as content, design, and aesthetics of sites, as well as disclosure of authors, sponsors, or developers to develop rating instruments for evaluating the quality of health-related information on the World Wide Web. Jadad and colleagues7 questioned whether these rating instruments measure what they claim to measure and whether they lead to more good than harm. With this information in mind, we devised a novel rating instrument with unique criteria for screening Internet sites that may offer medical misinformation on the Web.
Several points were kept in mind as the screening tool was developed. In contrast to previous strategies, the current screening tool included four yes/no questions that can be rapidly and easily implemented. Like previous screening tools, the questions were designed to identify sites offering inaccurate information. Many complementary/alternative medicine treatments, including many herbs, may be purchased online without a doctor's prescription, and most patients do not reveal their use of herbal medications to health care providers.8 Online purchasing facilitates this practice. The current strategy identifies online purchasing, as well as several other elements, as a warning sign that sites may be offering anecdotal and inaccurate information.
This strategy was tested on three different complementary/alternative medicine treatments that are commonly used by cancer patients. Floressence is among the most widely used herbal products by cancer patients.9–11 Amalaki is another herb used frequently by cancer patients as part of an Ayurvedic approach to cancer treatment.12–14 The clinical research on each of these herbs in human cancer is sparse. In contrast, selenium is a nonherbal complementary/alternative medicine treatment often used as part of a complementary cancer treatment that has been prospectively studied in the prevention of cancer in humans.15–17 Despite the relative lack of rigorous scientific research, these complementary/alternative medicine treatments are easily accessed and commonly used by cancer patients. A study of available online information that may influence patients' choice of cancer treatment may be of value.
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METHOD
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Separate Internet searches were conducted for the three complementary/alternative medicine treatments. For each Internet site, the following four screening questions were employed: 1) Is online purchasing permitted? 2) Are "patient testimonials" available? 3) Is the treatment described as a "cancer cure"? 4) Is the treatment described as "having no side effects"? A "yes" answer to any of these questions was deemed a "red flag" denoting questionable scientific accuracy. Sites were categorized based on the number of red flags. MEDLINE searches were also performed and peer-reviewed literature from these searches were used to determine the scientific accuracy of the information in each Internet site category.
On July 16, 2001, a search was performed that used the keyword "floressence" on the search engine Yahoo. In order to test the generalizability of the above four questions as a screening tool, two similar searches were executed. On Sept. 7, 2001, the authors performed an additional search using the keywords "amalaki" and "cancer" on the search engine Google. On Oct. 10, 2001, an "advanced search" was executed on the search engine Google that used "selenium cancer" as an "exact phrase."
With MEDLINE, a subject search on July 16, 2001, that used the phrase "floressence" revealed one match; a subject search, on Sept. 7, 2001, that used the phrase "emblica officinalis" (the botanical name for amalaki) revealed 20 matches; and a power search on Oct. 10, 2001, that used the subject phrases "selenium" and "cancer" revealed 246 matches.
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RESULTS
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About one-third of the initial site matches were not explored in detail because they were in languages other than English or Spanish or they contained information totally unrelated to complementary/alternative medicine and to this study. The total number of sites explored in detail was 194 (Table 1).
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TABLE 1. Results of Internet Searches for Three Complementary/Alternative Medicine Treatments Commonly Used by Cancer Patients
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A large majority of the sites (>90%) in the floressence and amalaki searches had at least one red flag (Table 2). In these searches, sites with at least one red flag provided a large amount of vague and inaccurate information. In comparison, all sites with no red flags provided some scientifically accurate information, including links to scientific organizations such as the National Cancer Institute and the National Center for Complementary and Alternative Medicine.
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TABLE 2. Red Flagsa Within Sites Explored for Information on Three Complementary/Alternative Medicine Treatments Commonly Used by Cancer Patients
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The results of the selenium search differed in several ways from the first two searches. When compared to the floressence and amalaki sites, significantly fewer sites in the selenium search had at least one red flag (Table 2). Further, sites in the selenium search provided some accurate information, including links to scientific organizations and peer-reviewed journals, regardless of the number of red flags.
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DISCUSSION
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The Internet has become a valuable source of information for patients and clinicians alike. The results of these point-in-time analyses were remarkable for several reasons. The floressence and amalaki searches involved herbal medications for which there is little objective clinical research. In each of these searches, the red flag screening questions were quite effective in identifying questionable sites. However, the red flag questions were not as helpful for sites involving selenium, a cancer treatment for which there is some objective scientific research.
For floressence, all sites with no red flags provided links to scientific organizations such as the National Cancer Institute and the National Center for Complementary and Alternative Medicine. One site with no red flags provided a link to a published literature review by Tamayo et al.9 That review describes the chemistry and biologic activity of the herbs in floressence, including possible cytotoxicity and immunomodulatory properties of these herbs that may be of therapeutic value for the prevention and treatment of cancer. However, the authors of that article emphasize that clinical research on floressence is limited and that only carefully designed clinical studies could confirm the anecdotal reports from cancer patients. Thus, the Internet site with no red flags pointed the reader to a reasonably balanced, peer-reviewed article.
In comparison, sites with multiple red flags provided a large amount of vague and inaccurate information. For example, one site offered an account of a 79-year-old patient with "bowel cancer." This patient reportedly took "recommended daily doses of Flor-Essence" for 6 months with "staggering results," including a return of normal appetite and bowel function, pain reduction, and a "disappearance of the tumors without medical intervention."
For amalaki, all of the sites with no red flags also provided scientifically accurate information and links to scientific organizations and peer-reviewed literature. One of these sites noted that amalaki is an herb that is commonly used in Ayurvedic medicine as part of a strategy to prevent cancer and that no controlled trials exist with amalaki in cancer patients. It also referenced peer-reviewed literature that describes the high vitamin C content of amalaki and a potential antioxidant mechanism for cancer prevention.12
As with floressence, the sites with multiple red flags provided anecdotal and nonscientific information. For example, one site with two red flags described how amalaki may be used to treat "any liver or heart complaints" and "is also applied as a paste to the head in mental disorders."
The search results for selenium were notably different from those of the other two complementary/alternative medicines. While fewer selenium sites overall had red flags, there was no clear distinction between the types of information provided by sites with no red flags and sites with red flags. Most sites, in each category, provided at least some scientifically accurate information about selenium and cancer. These results are intriguing and may be partially explained by the fact that more research has been conducted on selenium than the other two herbal cancer treatments. It is understandable that more sites provide scientifically accurate information regarding a topic for which more scientific information exists. Most sites in the selenium search referenced a study that was published in JAMA15 describing a multicenter, placebo-controlled, double-blind, randomized trial of selenium for the prevention of cancer. The conclusions of that study were that, although selenium treatment did not protect against development of basal or squamous cell carcinomas of the skin, selenium may reduce the incidence of, and mortality from, carcinomas of several sites. The article also noted that more research is needed before new public health recommendations regarding selenium can be made.
There is a staggering amount of medical misinformation on the Internet. When patients search the Internet for information on a topic for which there is little objective clinical research, use of these red flag questions may help identify questionable sites. Internet sites with one or more red flags should be avoided. However, presence of no red flags for any particular site does not ensure scientific accuracy. The ability of this screening technique to generalize to other complementary/alternative medicine topics should also be tested in the future.
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REFERENCES
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ABSTRACT
INTRODUCTION
