The staggering growth of the Internet has provided its huge global audience with potentially the world’s most powerful information source. However, this growth has been largely unregulated, and there is concern about the quality of the information that the Internet provides. The American Medical Association has produced guidelines for offering this information online in Medical and Health Information Sites on the Internet
) and states that the Internet
has the potential to speed the transformation of the patient–physician relationship from that of physician authority ministering advice and treatment … to that of shared decision making between patient and physician
but also states that several substantial barriers exist in realizing this relationship, including
equitable access to information, imbalance between patient health literacy and the information provided, extreme variability in the quality of the content (AMA, 2006
and the potential for commercial interests to influence content. This study confirms that within the area of pediatric neuro-oncology these barriers are a reality but that there are examples of good-quality health information on the Internet. Equitable access to information requires a simple means of finding quality information and multilingual content, but we determined that this may be problematic. Internet search engines are the commonest method for navigating the World Wide Web, and we encountered a number of problems in using this strategy. Like us, a patient or family member is faced with thousands of listed links that often lead to duplicate or irrelevant Web pages. There is little guidance from the ordering of search results with respect to quality, as our study found no correlation between order and ratings score (although Google does have some relevancy to its listing order). Upon finding a useful site, a viewer whose first language is not English is unlikely to have access to translation. This is a concern because the sites most often originate within multicultural countries and appear not to provide equitable access for their whole population.
Previous studies have found that an imbalance between patient health literacy and the information provided certainly exists on the Internet, with the majority of such sites written at a reading level that is too complex for most adults in developed countries (Berland et al., 2001; D’Alessandro et al., 2001; Graber et al., 1999
). This study confirms these previous results, with the Web sites demonstrating an average Flesch Reading Ease score of less than 30 (very difficult) and a U.S. Kincaid Grade Level of 12+ (high school graduate level or higher). This is considerably more difficult than the recommended level for health literature aimed at adults. Unfortunately, the sites with the best content often had the highest reading levels, perhaps negating their usefulness. When one considers that our patients range from young children to adolescents, who may also wish to look at information about their own disease, these readability statistics are of great concern because they effectively exclude the very population that suffers from the tumors they discuss.
There is an extreme variability in the quality of the content of health information in pediatric neuro-oncology on the Internet. The results of our ratings assessment indicate that very few sites achieve high standards by the criteria of the DISCERN tool. Only 11% of sites rated as excellent or good, whereas 60% were rated as poor or very poor. These poor ratings were mainly the result of not providing sufficient details to enable a health information consumer to judge the validity of the information, for example, no details about contributors or lack of referencing. This is a vital part of good practice in providing health information to the public, and this data should always be available. The DISCERN tool also places major significance on the availability of information with respect to shared decision making in health care, such as alternative treatment options and effects on quality of life. Although it is understandable and appropriate that some Web sites may specifically avoid providing information that may be controversial, debatable, or potentially upsetting (e.g., prognosis, treatment of relapse, or specific late effects of therapy), it is useful to direct the viewer to appropriate sources for this information, that is, a more comprehensive Web site, such as the National Cancer Institute or, of course, the patient’s own health care team.
A major worry about medical information on the Internet is inaccuracy. However, the results of our Checklist Rating System Instrument were reassuring in documenting only a few inaccuracies (mean, 5%). These, though, appeared to be clustered in a few sites with a high number of inaccuracies, which meant that any viewer of these particular Web sites could gain contradictory information from the patient’s own health care team that could lead to significant distress. Some of the inaccuracies were simply due to poor presentation, for example, “30% of brain stem gliomas are cured” (no explanation to distinguish the rarer low-grade focal tumors with a good prognosis from the more common diffuse intrinsic pontine glioma with a dismal outcome). More worrying were two examples of Web sites with obvious agendas, which were antiorthodox medicine. These included statements such as “Oncologists must be stopped from using children for experimentation” and “Be certain to undertake biopsy only if it is absolutely essential. Don’t rely on the word of orthodox doctors alone; consult also with progressive or holistic physicians.” Despite these examples, other Web sites described the role of complimentary or alternative therapies in relation to orthodox treatment in a balanced and well-informed manner.
Only two sites consistently rated as good or excellent across all five tumor types. The U.S. government site for the National Cancer Institute, which contained comprehensive, well-referenced, and updated information, which was provided in English and Spanish (an adaptation of this site by the University of Bonn also translated this into German). Second was the sponsored site eMedicine, which also provided comprehensive, well-referenced, and updated information by invited experts in the field and also usually provided more than one opinion for each tumor. Both sites provide two levels of information: one version for health professionals and one for patients.
There was no correlation between the type of Web site and either quality of information as rated by the DISCERN tool or the number of inaccuracies found. This may provide some reassurance as pertains to the potential for commercial interests to influence content, although this remains a possible concern.
A possible criticism of this study is that we evaluated all Web sites providing tumor health information, whether or not health consumers were their stated audience. This obviously means that some sites may be judged unfairly when compared to those where providing patient information is the primary aim. However, the study aimed to replicate the situation faced by a patient or family member using a search engine to access more knowledge about a brain tumor, and as stated above, it is unlikely that they will encounter only such dedicated sites. For this reason, we believe there needs to be a shared responsibility of health information consumers and Web site developers.
The general public must be made aware that the Internet is largely unregulated, that information may not be reliable, and that they must be cautious in viewing content not specified for the purpose of patient information. Equally, all those who provide information on the Web must be aware that it may be viewed by those other than their intended audience and that it is wise to state clearly the aim and limitations of any health information– containing Web site.
There has been an extensive debate about whether health information on the Internet should be controlled, rated, or validated in some way and about the possible means of how this could be achieved (Gagliardi and Jadad, 2002; Jadad and Gagliardi, 1998; Kim et al., 1999; Purcell et al., 2002; Shepperd and Charnock, 2002
). We chose to use a validated ratings instrument as our primary tool, which was designed mainly to enable health consumers to judge health information. The DISCERN tool provided acceptable interobserver agreement for a graded instrument and also correlated with our second tool, the Checklist Rating System Instrument. However, the time it takes to learn how to use and apply the tool makes the authors doubt that this would be widely accepted by the general public. This means that other methods would need to be employed (e.g., simple consumer guidelines, voluntary codes of conduct, filtering tools, or third-party rating schemes) if some degree of external control is deemed necessary (Durkin, 2000; Edgar et al., 2002; Eysenbach et al., 2000; Wilson, 2002
). Alternatively, one can choose to believe that members of the general public are quite capable of distinguishing between a well-designed, clear, evidence-based Web site and a substandard one. However, this means that high-quality, well-maintained Web sites must be available, and this is a major task and an expensive exercise. Ideally, this would be undertaken by national and international cancer groups and funded directly by government as part of public health care.
We decided not to assess the other less tangible elements of the Internet structure such as the architecture of sites, the use of links, and multimedia use (e.g., audio, animation, and video). Although a potentially major advantage over other media types, these elements are difficult to assess objectively (and are not accessible for all because they often require a high-speed Internet connection), but we did subjectively feel that there was a lack of imagination on the sites assessed as compared to Web sites providing information in other areas of health, which use audio, animation, and video footage to help explain complex information at a simpler level, especially engaging for children and adolescents.
Patients with CNS tumors and their families deserve the best possible information available 24 h a day. The Internet can provide this and augment other traditional sources of information in an imaginative and novel way. Health care professionals have already begun to harness this unique tool for the good of their patients, and we hope that the initial enthusiasm will lead to a new and improved generation of Web sites.