Introduction
Since the advent of the Web, the practice of medicine has shifted significantly. No longer is the physician sole gatekeeper of medical knowledge. Patients have more and more recent medical information at their fingertips, and more time to read it, than their physicians.
A more educated patient isn't necessarily a good thing, however, when they carry in hundreds of printouts of material from false “authorities” that conflict with best practices and serve only to confuse them and interfere with their treatment. Not all online patient reference materials are unbiased and rooted in science. However, patients are rarely in a position to judge content — with the Web-development tools and templates available today, anyone can create an impressive, professional-looking Web site in a few hours.
One solution to the patient-education problem is for you to preselect sites that offer sound advice and point your patients to these sites. This can take the form of links on your Web site or as a printed list of URLs that you can hand out to your patients. This article explores free, online patient-education options and how you can help patients identify trustworthy sites on their own.
Online Resources
The overall quality of medical information on the Web covers a continuum, as a function of authorship and affiliation. Although there are exceptions, I've found the guide in the figure below representative of the medical content available to patients on the Web. The general characteristics of each type of resource are described here.
Academic, Government, Journals, and Societies
In general, the most trustworthy medical data for patients are from government and academic sites, as well as from sites affiliated with medical or scientific journals and the major medical societies. Some of the more notable sites are discussed in the following section.
Independent MDs
Independent physicians may have links from their Web sites to patient-education sites they recommend, as a service to their patients. You might consider adding links to your Web site as well, instead of printing handouts of suggested sites for your patients.
Aggregators
Portals or content aggregators, such as AOL and Yahoo, are further down the continuum. The problem with aggregators is that it's often difficult for users to know when they've crossed into sponsored links. For example, Yahoo's health portal, which is certified by VeriMed Healthcare Network, links to questionable content.
To illustrate this point, I looked up acute gouty arthritis on the Yahoo health page. An article sponsored by A.D.A.M. appeared, along with the notice that the content was verified by VeriMed. So far, so good. However, the article was linked to LifeSpan Health Products. Although I have no experience with the company or its vitamin packs, there are numerous unsubstantiated claims, such as “Every year NSAID[s] [nonsteroidal anti-inflammatory drugs] send 100,000 people to the hospital and Kill 16,500.” While this may be true, it isn't referenced. These figures may refer to the World Health Organization (WHO) worldwide estimates or may be the product of a creative marketing type. In either case, if you prescribe a NSAID to a patient who has visited the site, expect overt or passive resistance.
Foundations
There are numerous “foundations” on the Web, supposedly devoted to getting the word out on medical treatments. Some are simply designed to increase public awareness of specific disorders. However, I've run across many foundation sites that have unclear purposes and even less clear pedigrees. Telltale signs of a questionable foundation site are a board of directors without medical degrees. Another is linkage to a larger healthcare group or conglomerate. To be safe, suggest your patients avoid many of the foundation sites.
Pharmaceuticals
The pharmaceutical industry is the source of financing for most of the printed medical journals and much of the medical content on the Web. However, the best content is sponsored by educational grants. Content on a pharmaceutical company's site is suspect given the obvious conflict of interest.
Sponsored
Sponsored sites and links are often less reliable than pharmaceutical sites because their claims may not be substantiated. Returning to the example of the sponsored link from Yahoo, the efficacy of the vitamin pack and the out-of-context quotes are all questionable.
Unaffiliated
The most suspect are unaffiliated sites with unknown and unknowable authorship and support.
Notable Sites
The following example sites have several key factors in common. One is the trustworthiness of their content. The other is a statement of how patient privacy is handled. Because maintaining privacy may be important to your patients, make certain that they check the privacy notice before entering their name, address, email address, or any other personal identifier.
Academic
Children's and Women's Health Centre of British Columbia, Vancouver, British Columbia, Canada. Although most of the medical content on the Web is of US origin, many of the higher-quality sites are in other countries. This comprehensive site is sponsored by several prominent hospitals and centers in British Columbia.
Johns Hopkins Medicine, Balimore, Maryland. This site is an example of a hospital-oriented portal that combines information with local facilities with general medical news. In addition, each of the major departments posts specialty-specific patient information, eg, Johns Hopkins Medicine Gynecology and Obstetrics.
Mayo Clinic, Rochester, Minnesota. This comprehensive site accepts advertising. However, the site maintains a distinct separation between advertising content and editorial content. Sponsored areas of the site are labeled, and the sponsoring organizations are clearly identified.
Government
Centers for Disease Control and Prevention. This site is expansive and easy to access, but text-heavy. The recently posted content is focused on bioterrorism issues.
National Institutes of Health (NIH). In addition to providing a wealth of information on its Web site, there are links to dozens of NIH-related institutes and resources. In my opinion, it is one of the best sources of medical information for patients on the Web.
Journals
Postgraduate Medicine Online Library of Patient Notes. Many of the more prominent medical journals, such as The New England Journal of Medicine and JAMA, offer online content, but the content is beyond the understanding of most patients. However, there are several journals with patient materials, and these are available on the Web. One such site is Postgraduate Medicine Online (author's disclaimer — I have authored Patient Notes and serve on the editorial board of this journal).
Societies
American Cancer Society (ACS). This site provides a wealth of content for patients, families, and healthcare providers. A notable utility is their NexProfiler decision-support tool that assists patients in understanding their treatment options and potential side effects. Also, although patients may opt out of mailing lists and other uses of their private information, the default condition is to allow the use of personal information in a limited way.
American Diabetes Association. This site, which serves as a portal for patients and physicians, is comprehensive and authoritative. A major feature is an “In Diabetes Today” section that provides links to late-breaking news for patients and physicians. As a default, the personal-information policy of the site is, “The American Diabetes Association may sell, trade, or rent your personal information to others.” Patients may opt out by sending an email to the association.
American Heart Association (AHA). This is a comprehensive portal for patients and providers. A notable features is a section for Spanish-reading patients. Like the ACS and the American Dental Association (ADA), the AHA collects personal information. Their personal-information policy states that, “The AHA will suppress the use of an individual's Personal Information if requested by that individual.” Your patients will have to take an active role in protecting their privacy.
Locating Your Own
Locating your own sites in a particular specialty or dealing with a specific disease doesn't necessarily require you to surf the Web for hours on end. A shortcut is to look for certain “seals of approval” you can use to weed out the questionable sites. You can also alert your patients of these awards and seals to facilitate their search for valid medical information. Two of the more relevant certifications include what follows.
VeriMed Healthcare Network
VeriMed Healthcare Network. This site is a commercial group that uses physicians and residents that self-select to use their service. It may be a matter of posting, but the VeriMed physician listed in the acute gouty arthritis example above was only identified by his department, not his academic rank or title. He may have been a resident or head of the department.
Health On the Net Foundation
Health On the Net Foundation (HON). HON is one of the first certifying bodies on the Web designed to guide patients in their selection of online medical information. The HON icon doesn't mean, for example, that the content is free of commercial bias, but that the commercial affiliation is made obvious to the user. This is a free, noncommercial service supported by the Geneva University Hospital, Geneva, Switzerland, and the Swiss Institute of Bioinformatics, Geneva, Switzerland.
End Note
A medical site plastered with seals and awards isn't necessarily in your patient's best interest. For example, the criteria for the National Health Information Awards includes the “ability to elicit appropriate consumer action.” Because there are many such marketing-related seals on the Web, it's important to tell your patient to look for a few of the better-known noncommercial seals, such as HON. Furthermore, it doesn't take much to paste an icon on a Web site. For this reason, HON and others provide a utility that patients can use to verify that a site is actually a recipient of the award.
Another factor in pointing a patient to sites of independently validated material is that simply because posted content medically correct doesn't mean that it's right for you or your patient. You should educate your patient on regional and hospital variations in standard practices. Simply because a procedure is performed at Johns Hopkins doesn't mean that it's recommended or even available at your institution.
Figure 1.
Quality-trustworthiness continuum of online medical resources for patients.