Resources for Patient Education: Introduction

Teaching resources provide patients and families with important information. Many voluntary organizations and government agencies provide patient teaching materials at no cost to health care professionals and consumers. Resources for patient teaching range from traditional printed material to interactive Web sites. Helping patients and families locate health information and evaluate its accuracy and usefulness are vital parts of the nurse’s patient teaching role.

Increasingly, health professionals will face the issue of patients‘ bringing their own health information to appointments, often from the Internet. Use of the Internet as a primary source of medical information is expected to grow significantly in the near future.1 The Internet is attractive to both patients and health professionals for a number of reasons. It is a high-speed, entertaining medium that allows users to search at their own convenience. Communication is anonymous, and service provider charges are usually reasonable. The challenge for patient educators is not only to take advantage of consumer education offered by the Internet, but also to reduce the potential damage of erroneous information.

Patients can obtain information from four different sources over the Internet-Web sites, newsgroups, listservs, and bulletin boards. Web sites connect the user to a homepage that has links to a great deal of printed information. (See Table 23 for a list of useful Web sites for patients.) Newsgroups are Internet-based forums for the exchange of information on specific topics. Listservs are mailing lists designed to serve the needs of groups of people who want to exchange information on a common topic of interest. Bulletin boards offer a number of services for patient education and counseling that patients can use from home. Bulletin boards make it possible to provide information and interpersonal support to a variety of patient populations in a cost-effective way. By using the Internet, patients and families can share information and solve problems of common interest without having to arrange time to attend face-to-face support groups. They also allow participants to ask questions and receive answers from health professionals. Electronic bulletin boards also provide access to a library of expert information on health care problems. This easy accessibility reduces the time needed to search for health information or wait for materials to be sent by mail.

The Comprehensive Health Enhancement Support System (CHESS) is a good example of how a computer bulletin board can be used. Table 24 shows examples of CHESS services for women with breast cancer.

It is helpful to advise patients that an Internet site with the designation „edu“ for educational institution and „org“ for organization are generally reliable. „Com“ or commercial sites may be put on the Internet by anyone-patients should be taught to carefully evaluate „com“ sites by looking at how current the information is, who the sponsors are, and to whom the site has links. The potential for health quackery exists on the Internet; by helping patients become educated consumers, nurses can help prevent them from being misled by inaccurate or even dangerous information. Three strategies health care professionals can use to incorporate the Internet into health care are to

  • Develop Internet sites to point patients to reliable information.
  • Advocate for endorsement of sites by professional organizations.
  • Act as intermediaries between patients and the Internet.

Table 23

Examples of Useful Consumer Health Web Sites

  • Centers for Disease Control and Prevention (CDC) – www.cdc.gov – resources about general health and disease topics arranged alphabetically under „Health Topics A-Z“
  • Health finder – www.healthfinder.gov – serves as a gateway to consumer health information, databases, Web sites, support and self-help groups, and government agencies and nonprofit organizations that produce accurate and reliable information for the public
  • HIV Insite – http://hivinsite.ucsf.edu/ – a gateway to in-depth information about various aspects of HIV/AIDS
  • MayoClinic.com – www.mayoclinic.org – provides information from over 2,000 health care professionals at the Mayo Clinic to patients and the general public
  • MEDLINE plus – www.medlineplus.gov – a consumer-oriented Web site provided by the National Library of Medicine, the world’s largest biomedical library
  • National Women’s Health Information Center (NWHIC) – www.4woman.gov – serves a gateway for selected women’s health information resources
  • NOAH: New York Online Access to Health – www.noah-health.org – one of the oldest health consumer Web sites, provides high-quality and accurate full-text information to consumers
  • Oncolink – www.oncolink.com – a site specializing in cancer-related information for consumers
SOURCE: Romano, C.A., Hinegardner, P.G., & Phyillaier, C.R. (2003). „Consumer health resources.“ In: Fitzpatrick, J.J., & Montgomery, K.S. (Eds.) Internet Resources for Nurses, (2nd ed.). New York: Springer Publishing Co., 156-168.

 

Table 24

CHESS Services on Breast Cancer

  • Questions and answers: 250 questions most commonly asked by women with breast cancer
  • Instant library: 150 articles on breast cancer-related issues
  • Getting help: guidance on how to be an informed consumer
  • Referral directory: organizations that will help or find services
  • Personal stories: women sharing breast cancer experiences
  • Ask an expert: users can leave confidential messages and receive confidential information from medical experts.
  • Discussion group: users can leave messages on a bulletin board for other users to read and respond to
  • Decision aid: helps women decide among treatment options
  • Action plan: helps women develop plans to implement their decisions
  • Dictionary: definitions of health-related terms
SOURCE: Adapted from Gustafson, D., et al. (1993). „Development and pilot evaluation of a computer-based support system for women with breast cancer.“ Journal of Psychosocial Oncology, 11, 69-93.

Selected Patient Education Resources