Patient Education Via the Internet

Most practitioners have experienced the patient who brings a sheaf of papers containing their research on the medical condition being treated. Frequently doctors spend significant amounts of time refuting the accuracy and appropriateness of the material. Problems with the information could range from simply being dated, to out and out quackery. Sometimes, however, there may be some real gold.

If you and your staff can assist your patients in becoming more knowledgeable users, the World Wide Web can become a valuable tool to assist with patient education. It has been suggested that empowering patients to find clarifying and enlightening information about their condition can transform the patient-physician relationship from one that is authoritarian-based to one of shared decision-making between physician and patient (1).

Web users have been advised that the medical information found on some websites can be incomplete, misleading, or totally inaccurate. In an effort to shield patients and consumers from the perils associated with inaccurate or outdated information, several organizations have developed useful guidelines.

Among those organizations is the American Medical Association (AMA) via their Guidelines for AMA Websites. AMA has sought to endorse certain sites and articulate certain specifications that lend integrity to the information. This document was published in 1999 and focuses on very specific areas: creation and updating of content; acquisition and posting of advertising; the preservation of privacy and confidentiality; and the provision of reliable and efficient e-commerce.

Another organization, Quackwatch, Inc. (2), focuses its energy on quackery-related information. Their purpose is to:

• Investigate questionable claims;
• Answer inquiries about products and services;
• Advise quackery victims;
• Distribute reliable publications;
• Debunk pseudoscientific claims and report illegal marketing;
• Assist with or generate consumer-protection lawsuits;
• Improve the quality of health information on the World Wide Web;
• Attack misleading advertising on the World Wide Web

Other sites under their purview include Device Watch (a guide to questionable medical devises), Cancer Treatment Watch (a guide to sensible cancer treatment), and Internet Health Pilot (a gateway to reliable health information). The Quackwatch organization was founded by Dr. Stephen Barrett in 1969 and has been a member of the Consumer Federation of America.

Medem has an award-winning medical library and partners with many medical societies for content. It organizes the information by the following broad topical areas: life stages; diseases and conditions; therapies and health strategies; and health and society. It was chosen as one of the 10 most useful websites for patients because of reliable health information ranging from introductory to advanced levels.

MLANET (3) has been established by the Medical Library Association (MLA) and provides an online users guide. Their mission is to promote quality information for improved health.

To identify reliable websites, they suggest looking at:

• Sponsorship
  • Can you easily identify the site sponsor?
  • Does the site list the advisory board members?
  • Note the difference in Web addresses. For example, “.gov” denotes a government agency, “.edu” an educational institution, and “.org” a professional organization. Commercial sites are identified by “.com” and include a wide range of entities from hospitals to commercial enterprises, such as pharmaceutical or medical device companies.
• Currency — the site should be updated frequently
  • The date of the latest revision should be clearly indicated — usually found at the bottom of the webpage.
• Factual Information
• If information is opinion-based, that should be clearly stated.
• Audience
  • Should indicate if intended for lay persons or professional staff
  • Many sites have dual paths: one for patients/consumers and one for healthcare professionals.

The MLA offers the following top 10 websites for consumer health:

1. Cancer.gov is the official website for National Cancer Institute (NCI), a component of National Institutes of Health (NIH);
2. The Centers for Disease Control and Prevention is an agency of the Department of Health and Human Services. It is dedicated to promoting health and quality of life by preventing and controlling disease, injury, and disability. Also, the site has a valuable section on travel safety. Information is available in Spanish.
3. Familydoctor.org is operated by the American Academy of Family Physicians (AAFP). All of the information on the site has been written and reviewed by physicians and patient education professionals at the AAFP.
4. Healthfinder is a gateway for consumer health information. The developer and sponsor is the Office of Disease Prevention and Health Promotion of the Department of Health and Human Services. Information is also available in Spanish.
5. HIV InSite is a project of the University of California San Francisco. It has in-depth information on HIV/AIDS. Information is also provided in Spanish.
6. Kidshealth provides doctor-approved health information for children from birth through adolescence. It was created by the Nemours Foundation Center for Children’s Health Media.
7. MayoClinic. The editors of this site’s information include over 2,000 physicians, scientists, writers, and educators at the Mayo Clinic. It is intended to provide health education to patients and the general public.
8. Medem, see detailed information above.
9. MEDLINEplus is a consumer-oriented health information website established by the National Library of Medicine. It has an alphabetical list of health topics.
10. NOAH: New York Online Access to Health is a unique collection of state, local, and federal health resources for consumers. Information is provided as full-text and is in both English and Spanish.

MLA has identified the best websites for cancer. They include:

• American Cancer Society. This site is designed to provide news and information on types of cancer, patient services, treatment options, and cancer statistics. It also has a pediatric section and advice on living with cancer.
• Association of Cancer Online Resources. Their mission is to provide varied and credible information to cancer patients through cancer-related Internet mailing lists, as well as Web-based resources.
• Cancer Care, Inc. provides free professional help to those with cancer through counseling, education, referral and direct assistance. Information is also available in Spanish.
• CancerNet, National Cancer Institute. This site was produced by the Cancer Institute of National Institutes of Health. It offers information on types of cancer, treatment options, clinical trials, genetic information, risk factors and prevention, testing and support. A Spanish version is available.

MLA also provides links to multiple website resources for diabetes and heart disease. Each reference contains information on the sponsor, a description of the website, and the intended audience.

The American Cancer Society has been concerned about the proliferation of cancer websites with questionable content. It suggests questioning the reliability of information on sites if:

1. online purchasing is permitted;
2. there are patient testimonials available;
3. the treatment is described as a cancer “cure”;
4. the treatment is described as having “no side effects.”

Patients and families are eager to access credible health information to better understand the illnesses in their lives. Pointing the patient in the right direction by either posting guidelines or suggested websites can be a service to your patients and can greatly augment your efforts around patient education. To increase access to World Wide Web health information some practices have chosen to provide a terminal or have partnered with their local hospital to establish patient education centers. Patients will appreciate your assistance locating information that will inform them and help them to become educated partners in their healthcare.

Resources:

1. JAMA, VOL 283, No. 12, March 2000
2. http://www.quackwatch.com, mission statement
3. http://www.mlanet.org/resources