Michael A Diefenbach
Mount Sinai School of Medicine
New York, NY
According to a recent report from the Pew Research Center, eight in 10 internet users have accessed the web to obtain health-related information at www.pewinternet.org.(1) Compared with a similar survey conducted in 2002, the researchers found a significant increase in interest in diet, nutrition, vitamins, exercise or fitness, prescription or over-the-counter drugs, health insurance, physicians and hospitals, and experimental treatments of medications.
Interest for health information is particularly high among women, college graduates and individuals younger than 65 years old who are experienced internet users and who have broadband access. However, the internet is not the primary source of information for patients. For example, among prostate cancer patients who are deciding on a treatment, physician advice was listed as the most important source of information (87%), followed by advice from family and friends (68%), information from books, journals and TV (51%) and, finally, the internet (45%).(2)
How do cancer patients evaluate the information they receive from the internet?
Most cancer patients are satisfied with the information they receive from the internet,(3) and judge it as very (22%) or somewhat reliable (70%). The Pew Research Center reported that 52% of representative users thought that information they encounter is “almost all” or “mostly” credible.(1) Physicians have a more critical view of the information offered on the internet. Only 8% of a representative sample of physicians thought the information brought in by a patient during a consultation was very accurate.(4) This negative evaluation of the accuracy of health information, however, appears exaggerated. For example, a study evaluating prostate cancer information on the web found that only 4% of the information was inaccurate,(5) and 5% for breast cancer information.(6) These figures are quite low compared with the rate of inaccuracy found in nutrition- (89%) and diet-related (46%) information.(7,8) Despite these low rates of inaccuracies among websites offering prostate and breast cancer information, the onus lies on the patient to distinguish credible versus noncredible information, and not all patients are able to do so.
What patients can do to become web-savvy
Many physicians believe that it is difficult for patients to interpret medical information on the internet accurately.(9) Although healthcare professionals cannot be expected to educate patients how to evaluate health information on the web, there are some ways they can help their patients. Many cancer centers and hospitals have Patient Information Centres or Resource Rooms that are equipped with internet-connected workstations and are often staffed with librarians or health educators.
These professionals are a valuable resource for training patients to become educated health information consumers, either face to face or through group lectures.(10) Another simple way to educate patients is to introduce them to a newly developed system to evaluate websites; this is best represented by the CREDIBLE acronym. The CREDIBLE mnemonic helps patients remember the elements that are part of a trusted website (see Box 1).(11)
An alternative to the internet: closed internet or CD-ROM- based multimedia programs
Patients are often overwhelmed by the vast amount of information they encounter when searching for health information on the internet. For example, typing the search term “prostate cancer” in a search engine offers 26,000,000 possible links; even a refined search strategy for “prostate cancer symptoms” produces 4,250,000 hits. It takes a fair amount of patience and skill to extract the information one needs. Recognising this, researchers have started to develop multimedia systems that offer comprehensive health-related information. One of the best examples of a closed internet-based system in the USA is the Comprehensive Health Enhancement Support System (CHESS) developed by Gustafson and colleagues.(12–14) CHESS is a web-based support system that includes modular programs on breast cancer, AIDS/HIV infection, sexual assault, alcoholism and academic crisis.
For example, the breast cancer module provides disease information, a treatment decision aid, opportunity to contact healthcare providers via email, testimonials from patients and a patient forum to exchange information and to solicit social support. Evaluation studies have confirmed that the CHESS system is user-friendly and well accepted by patients of diverse demographic background.(15) The use of the CHESS system has also been linked to improvements in quality of life and increased participation in healthcare.(13) Despite its comprehensiveness, CHESS lacks a needs assessment module that would direct the patient to the desired information.
Another example is the CD-ROM-based Prostate Interactive Education System (PIES; see Figure 1).(16) PIES uses the metaphor of a health centre that the patient visits to obtain prostate cancer-relevant information. Upon “entering”, the patient is greeted by a health educator who gives him an overview of PIES, its capabilities and its rooms. PIES consist of various physicians’ offices, a library and a support group room. Physicians are represented by videos of actual doctors who talk about prostate cancer treatment within their area of specialisation. Patients are able to access these videos through menus listing frequently asked questions (eg, “tell me about side-effects from surgery”). The library organises information in book form. Each book contains information that is approved by the National Cancer Institute in text form and is illustrated with graphics, photographs and animations. The books on different prostate cancer treatment options are organised in the same way, which facilitates comparing the information across books.
The support group room allows patients to interact with prostate cancer survivors. Survivors are represented through videos. Patients have the option to type in questions or access appropriate video clips through a pull-down menu. Evaluation through usability testing demonstrated that patients were impressed with the breadth of information and the attractiveness of the graphics and videos. They also commented on the intuitiveness of the PIES metaphor and that “it made sense” how different kinds of information were stored in different locations (eg, books in a library).
In addition, PIES tailors its text-based informational content to a patient’s information seeking preference. Patients who require extensive information receive more detailed information compared with those who are satisfied with abbreviated content (see Resources).
The internet presents both benefits and challenges. On the one hand, it allows patients to become informed healthcare consumers; on the other hand, it requires skill and experience to extract the information that is most useful to the patient. Researchers have taken up the challenge by developing standards and educational programs that help patients navigate relevant information.
“Closed” web- or CD-ROM-based systems offer a solution to “information overload”. Such systems offer a user-friendly way to present comprehensive information about one specific topic area through multiple channels (ie, videos, graphics, animation, voiceovers). They further allow targeting of information to distinct patient groups (eg, minority populations) as well as tailoring to specific information needs. Early research points to the usefulness of multimedia programs for patient education; however, more extensive efficacy research is needed.
- Pew Research Center Featured Reports. Health Information Online. Available from: http://www. pewinternet.org
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- J Med Internet Res 2004;6:e3.
Cancer Research UK
Macmillan Cancer Relief