Physician's role in helping patients navigate the Web
How to handle information patients get from the Internet—and questions about where to look for more
From the November 1998 ACP-ASIM Observer, copyright © 1998 by the American College of Physicians-American Society of Internal Medicine.
By Howard Wolinsky
Whenever patients ask general internist Abhin Singala, MD, about information they've retrieved from the Internet, he is pleased—even if the information turns out to be incorrect.
"The Web has created a new avenue of communications between me and my patients," explained Dr. Singala. "If the information is wrong, I can deal with that as a physician and educator and help guide patients to better resources. If the information is correct, however, it can help eliminate time spent on additional research."
Dr. Singala's attitude is a pragmatic one. In Oak Brook, Ill., the affluent suburb of Chicago where he practices, nearly 80% of his patients are online, and they are constantly sending him e-mail about health-related Web sites they have found and corresponding questions about their health.
But Dr. Singala is quick to point out that he is not embracing online technology solely because of his patients' predilection for it. He feels so strongly about technology's potential as a communication tool that he gives his e-mail address to new patients and is putting Internet connections in all of his examining rooms to encourage his patients to get online.
While Dr. Singala's patients may be a technically savvy group, they are not alone. Cyber Dialogue, a New York firm that researches consumer use of the Internet, reported this August that of the more than 52 million U.S. adults who are actively online, up to 38% of women and roughly 28% of men search for health and medical information. These people are most interested in information about disease, diet/nutrition, drugs, online health newsletters and women's health.
But despite enthusiasm from their patients, many physicians remain concerned about the trend of downloading health care information from the Internet. They worry not only about the quality of information that their patients find online, but about how that information will affect the doctor-patient relationship, particularly when physicians have to explain that the information is incorrect.
Even Dr. Singala, who is an associate professor of medical and health informatics at the University of Illinois at Chicago, admits to a downside. "A lot of misinformation is on the Web," he said. "You have a lot of patients who try to play doctor on their own and have a lot of information, but they only have half of the picture. They come into the office, demanding tests or procedures for a diagnosis that they've made from the Internet."
So what can physicians do to offset the bad information that their patients are finding on various Web sites? To start, it's helpful to be familiar with some of the more popular sources of information on the Internet—and to be aware of their potential pitfalls.
Some of the information available on the Internet comes from online discussion groups, where patients can talk to other patients and medical professionals about their health problems via e-mail, electronic bulletin boards and online chat rooms. America Online, the largest online service, recently introduced a service called America's Doctor Online that allows AOL members to ask physicians questions about their health for free, day or night.
But many discussion groups lack any kind of direct physician supervision, and information consequently can be misleading. Edward J. Mathes, RPA-C, a physician assistant with Southeast Medical Associates, an internal medicine practice in suburban Rochester, N.Y., has witnessed bad advice being given online. In one case, a mother was distressed about a urinary problem in her daughter that required regular examinations. When the woman asked members of an online nursing group whether she needed to keep bringing her daughter into the doctor's office, several nurses told her it was unnecessary. Mr. Mathes said he later told the woman in a private e-mail that the exams were necessary to prevent kidney damage. He also recommended that she seek advice from a pediatric urologist.
Defenders are quick to point out that not all discussion groups are bad. Urologist Michael Bazinet, MD, founder and medical director of Mediconsult.com, a Web site for patients that is visited by about 500,000 people per month, said that discussion groups, especially those that serve as support groups, can be beneficial. He admitted that the quality of information garnered from these discussion groups varies widely, but added that they "can provide a lot of emotional support for patients."
Brooks S. Edwards, MD, a cardiologist and medical director of Mayo Clinic Health Oasis, Mayo's Web site, said that physicians should tell their patients to use caution when obtaining information from the Internet. "The medical information that is available on the Web is very heterogeneous," he said. "There is some wonderful information available, and at the same time there is dangerous information. Users have to exercise caution to know that the information they are receiving is reliable."
Judging Web sites
While no one organization oversees the quality of medical information on the Web, many Web sites use awards or seals given by organizations like the Health on the Net (HON) Foundation as markers of quality. In 1995, an international conference of some of the world's leading Internet, Web and telemedicine experts created the Foundation and its voluntary code of standards, which is now one of the more popular seals for health care Web sites. Sites that subscribe to the HON standards can display the seal on their pages.
In part, the HON standards say that only medical professionals should dispense health advice at Web sites or that there should be full disclosure if nonprofessionals are supplying the information. The standards also say the data revealed on the site should be kept confidential and that, when possible, data on the site should be linked directly to source data. (For more details on the HON code, see www.hon.ch/HONcode/Conduct.html.)
While the HON standards are viewed as a model of Web site seals, not all standards are quite so high. As a result, many can confuse—or even mislead—patients. Some standards, for example, indicate only that a group of graphic designers—not a panel of medical experts who examined content—gave thumbs up to a site.
But Marjorie Lazoff, MD, an emergency room physician who writes the NetView column for the newsletter, Medical Software Reviews (www.healthcarecomputing.com), said that the real problem with even top-notch standards is that they are not enforced. "The HON seal is a neat idea with some credibility, but it's a voluntary activity that carries no guarantee," she said. "It's laudable when a site supports HON's principles, but shysters could just as easily pretend they agree."
While HON does not actively monitor all sites, Mark Selby, executive director of the HON Foundation in Geneva, Switzerland, said that his organization does follow up on any complaints received. Mr. Selby pointed out that several sites have been instructed to remove the HON logo.
Some believe that advertising, especially by drug companies claiming to sponsor a site, is another issue to consider when judging Web sites. Physicians like Dr. Lazoff feel that the presence of ads can be distracting and confusing to patients, particularly those trying to cope with serious medical conditions. "Unlike a person looking for nutrition or exercise tips," she said, "patients seeking information about a newly diagnosed condition, or looking to sort out chemotherapy and surgical options, aren't appropriate targets for ads." Many critics of advertising at medical Web sites are also concerned that the content at many sites is designed to reinforce ads for the products being promoted.
Web sites that accept advertising defend the practice, however, claiming that consumers can distinguish promotional materials from other content. Dr. Edwards, director of the Mayo Clinic's Web site, said that although his site accepts advertising—some from the clinic itself—the site is still valuable to patients. "We are not a marketing site for Mayo Clinic," he said. "We exist to provide accurate, reliable and useful health information for the general public. I think most users are accustomed to ads, just as readers of Time and Newsweek are accustomed to ads in those publications."
Talking to patients
How should physicians handle patient requests for online sources of information? Dr. Bazinet, who feels that the Web is not radically different from other media, said that the same approaches used to sort out information from traditional sources should be applied to information from the Internet.
"The bottom line is that people need to be cautious about where they get their information," he said. "Using a reputable institution is the key to avoiding problems. Reputable sites like the Mayo Clinic site go to great lengths in their effort to provide quality information. They are committed for the long term, and it is in their best interest to maintain their reputation."
But Dr. Lazoff said that physicians, who do not generally have the time to thoroughly check out patient information resources on the Web, should think twice about endorsing any particular site. "Despite a number of very useful sites, physicians need to be very careful in recommending anything, even if sponsored or written by reputable institutions," she said. "Unfortunately, most health information on the Web is not comprehensive. There is no way to assure quality content, and there's no easy way for the medically uninitiated to identify information that is specific and reliable for them."
Besides, Dr. Lazoff added, blanket recommendations of Web sites aren't generally very useful because patients have different needs, as well as learning styles and levels of literacy.
Unfortunately for patients and physicians alike, the situation shows few signs of improving. "There are simply not enough medical experts on this planet to monitor the quality of medical information being placed on the Net every hour of every day," noted HON's Mr. Selby. "A Web site could be reviewed and approved by such an expert, but then its entire content could change 15 minutes later."
Howard Wolinsky is a Chicago-based freelance medicine and technology writer.
Eight Web sites worth mentioning to your patients
With an estimated 10,000 Web sites devoted to medicine and health care, it's impossible for physicians to keep up with everything their patients may be finding on the Internet. While it's best to review Web sites you recommend to patients yourself, here are some sites suggested by physicians who regularly surf the Web. You might consider mentioning them to patients who ask for advice about where to find accurate medical information:
- The American Medical Association (www.ama-assn.org/) contains special pages on asthma, women's health, migraines and AIDS. Drug company sponsors keep a low profile on these pages, which include news reports, journal reports and links to other Web sites. The site also features a database of the country's physicians, information from AMA journals and an atlas of the human body.
- The Combined Health Information Database (chid.nih.gov/) provides titles, abstracts and lists of health-education resources on topics such as AIDS, Alzheimer's disease, arthritis, cancer, deafness, digestive diseases, disease prevention, epilepsy, maternal health and weight control. Sponsors include the Department of Health and Human Services, the Public Health Service, the CDC and the NIH.
- Columbia Home Health Guide (cpmcnet.columbia.edu/texts/guide/) contains the text of the Complete Home Medical Guide from Columbia University College of Physicians and Surgeons.
- Dr. Koop's Community (www.drkoop.com/) offers health news, chats, forums, bulletin boards, encyclopedias, daily polls, drug information, Web site reviews and "Ask Dr. Koop," a feature where community members can pose questions to former U.S. Surgeon General C. Everett Koop, MD.
- Healthfinder (www.healthfinder.org/default.htm) serves as a gateway site to consumer health sites, online publications, databases and other resources from the U.S. government. The site provides links to medical dictionaries, medical libraries, toll-free phone numbers for health information, and health-related Internet search engines. Contributors include the Administration on Aging, the Agency for Health Care Policy and Research, the CDC, the FDA, HCFA, the Library of Congress and the NIH.
- InteliHealth (www.intelihealth.com/) from Johns Hopkins Hospital contains information from the "Johns Hopkins Encyclopedia," an "Ask-the-Doc" section to pose questions to Hopkins physicians, a U.S. Pharmacopeia database, news and Medline searches.
- Mayo Clinic Health Oasis (www.mayohealth.org/) offers information and education from Mayo Clinic doctors on asthma/allergy, Alzheimer's disease, cancer, children's health, heart disease, nutrition and men's and women's health. The site also has a searchable database of drug information and news.
- Mediconsult.com (www.mediconsult.com) contains medical information and news on a wide variety of topics with special areas for men's, women's and seniors' health. Information on clinical trials, journal articles, drug information from the U.S. Pharmacopeia and Medline searches is also available.
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