Extend your clinical reach with the Internet

By Kevin B. Johnson, MD, and Christoph U. Lehmann, MD

This electronic wizard can help you make an unusual diagnosis, generate management guidelines, or locate a support group more quickly and easily than any other resource in your office--if you understand a few basic principles.

The constellation of findings in a 2-year-old who is new to your office are striking. The child has been healthy except for a history of anemia that is unresponsive to iron supplementation. He has four café-au-lait spots; his most recent complete blood count revealed mild thrombocytopenia, though a "clotted specimen" could not be excluded. Your physical exam shows delayed growth--below the fifth percentile for height, weight, and head circumference and at the 50th percentile for a 1-year-old. These findings seem familiar. Five years ago, you would have scoured the textbooks in your office or presented the case to your partners. But now you excuse yourself and quickly launch your web browser. You go to the Online Mendelian Inheritance in Man site at http://www3.ncbi.nlm.nih.gov/omim and put in the important findings. You press the enter key and in a few seconds see a differential for this child's condition. By selecting each underlined diagnosis, you are able to review the salient points about that condition. You return to look again at your patient. Bingo! The child's thumbs are indeed somewhat hypoplastic. Fanconi pancytopenia syndrome is the likely diagnosis.

This true account demonstrates the power of the World Wide Web in the hands of the astute physician. As recently as 1992 the Web was nothing but a morass of inaccessible text-based information of little use to most physicians. Now it is an easy-to-use resource for information cast in almost every conceivable form--text, graphics, sound, video, three-dimensional animation, and even live audio/video broadcasts. The health information content of the Web has increased at a dramatic pace, though not all of it is reliable.

To illustrate the benefits and risks to the practicing pediatrician of getting information from the Web, we have developed nine case scenarios like the one that opened this article. Since uniform resource locators (URLs) often change and the same information may be available at more than one site, we list only a few representative sites by name and URL in each discussion.

CASE 1: News to you!

JJ is one of your favorite adolescent patients. At a recent clinic visit, she divulges that she is considering becoming sexually active. Your discussion soon turns to methods of contraception. You confidently describe the safety and efficacy of all the common methods. JJ listens intently. As you finish, you see her light up. "I thought I might use the contraceptive ring. Did you see the report on cable yesterday?" You excuse yourself (and wish that you hadn't spent last evening watching a movie), then turn to the Web.

Fortunately, many news wires and other media groups publish their contents on the Web. In this case, you can easily use a search engine such as Excite at http://excite.com, HOTBOT at http://www.hotbot.com, or a host of others. From this site you enter a key word or phrase to obtain a list of Web pages that contain those words. Alternatively, if you knew that the report that JJ was referring to had been on CNN, you could go to its website--CNN On-Line (http://www.cnn.com)--and search for the story your patient saw. As a rule, if you can name a likely source for the information, you can guess its URL; if you can't determine the URL, you can try a search engine.

An excellent source of news is Business Wire at http://www.businesswire.com. Yahoo! at http://www.yahoo.com, Infoseek at http://www.infoseek.com, and many other sites also distribute and store press releases. To use Yahoo!, search on "press releases." MEDLINE is available to physicians and patients on the Web at http://www.ncbi.nlm.nih.gov/ PubMed. MEDLINE is not as up-to-date as CNN, of course, because journal articles must be indexed before they can be retrieved.

Helping patients interpret and evaluate medical information they have obtained from a lay publication or TV is always a challenge but has been made a lot easier by the Web.

CASE 2: Too good to be true

LP, a 4-year-old with atopic dermatitis, visits your office with her mother. She proudly presents you with a handout from an organization that sounds "respectable," but is unfamiliar to you. This group proclaims that wearing a solid copper band on the arm is a breakthrough treatment for atopic dermatitis and will produce a complete cure. You quickly put your newly acquired Web-sleuth skills to work.

While the Web has become an important resource for medical information, it has also developed into a platform for promoting nonscientific, fictitious, or dangerous medical treatments or cures (http://www.quackwatch.com). The letterhead of the organization, its name, and the tone of the message give you the first clues about the nature of the information, just as they would on a piece of ordinary mail. When the message comes from the Web, however, you have another clue--the website address (see figure). If you trust the messenger, you might trust the message!

Information that most health-care providers are likely to take seriously will come from sites ending with edu (an educational institution), mil (military), or gov (government). Information from sites ending with com (commercial) org (nonprofit organization), net (Internet service provider), or any country code should be scrutinized. The address prefix "http" (hypertext transfer protocol) simply confirms that the site is designed for Web technology. You may need to review the website yourself to assess the validity of the document's contents. Occasionally, biased groups use their name and their home page design to disguise themselves as neutral national organizations. The old adage is true--never judge a book by its cover.

In this case, a search engine provided a site on alternative medicine: http://cpmcnet.columbia.edu/dept/ rosenthal./databases/AM_databases.html. The site quickly revealed that copper band therapy for atopic dermatitis is not well tested.

CASE 3: The missing link

DD is a 12-year-old girl with Apert syndrome. Her craniosynostosis has been repaired and she has mild hearing loss and syndactyly. After you offer the parents anticipatory guidance and discuss with them and DD her recent hearing test, you notice that DD is making little eye contact. Your questions reveal that she is embarrassed about her disorder, and feels picked on at school. Moreover, she wants additional surgery to correct her facial anomalies, according to her parents, but there is no medical indication for these risky procedures. Finally, her parents say, "If only there were more families with this syndrome who we could talk to. Do you know if there is a support group for Apert syndrome?" You call your favorite geneticist, but can't reach him. So you turn to the Web.

The Web has become an ideal resource for locating support groups for patients with chronic diseases. Although some textbooks and journals list these groups, they can't remain up to date. In addition, information about local contacts generally is available only from a central office. The Web offers support groups an inexpensive way of providing up-to-date, detailed information to new members and, via Internet tools such as E-mail and listservers, disseminating information. These same tools allow members of support groups to contact one another. Subject- specific indexes like PEDINFO (http://www.uab.edu/pedinfo) and Pediatric Points of Interest (http://www.med.jhu.edu/peds/neonatology) index many support group websites.

As with any Internet-based information, it is important to examine the credentials of a support group and to follow up any Web-based contact with a phone call to clarify questions. A search on Apert syndrome reveals many sites sponsored by well-known educational institutions that may be good starting points for patients looking for a support group.

CASE 4: A not-so-private affair

Frank, the father of a child who has cystic fibrosis, asks you if using the Web at work to gather information about his son's illness puts his privacy at risk. We are likely to hear this important question increasingly often as parents worry about denial of health coverage or about owners of Internet sites having access to personal information. You probably will be unable to give Frank a simple Yes or No answer, but an understanding of the security risks will enable you to alert him to potential problems

To address Frank's concerns, we need some information about the equipment Frank is using. We already know the location of the computer--a key piece of information. Because all Web links, images, and pages are stored in an area of the computer called a "cache" after an individual finishes a search, any subsequent user of that particular computer can retrieve this information. Most computer browsers allow users to purge the cache and to delete the history of visited URLs. This precaution does not prevent companies from monitoring employees by using installed software programs that register users' keyboard and mouse actions.

E-mail privacy is also difficult to maintain, especially on the job. The courts have ruled that E-mail at work is the property of the employer and that employees have limited rights of privacy (Flanagan vs. Epson America). True security on the Web requires security at three levels: the location for information (the server), the channel of communication (the Internet) and the destination for information (the computer on an individual's desktop). Details about Web security may be found on the Web at http://www.microsoft.com/insider/internet/articles/security.htm. Information also may be available as a menu option under "help" in the tool bar on the web browser screen.

A new feature in computers at many sites further complicates this issue. It used to be that Web services for targeted audiences could not identify a user unless an identifier and password were entered with every interaction. The development of client-based "cookies" now allows websites to store small pieces of text in the user's computer. When a user revisits a website that uses cookies, the site identifies the user and may use stored information to customize the site by changing advertisements, bringing up relevant links, or other modifications. If you have Windows 98, a visit to its update page will reveal cookies in action. Other popular sites, such as Yahoo!, Amazon, and E-Bay use cookies extensively to tailor their Web pages to the user's interests. Sharing cookies and information collected about visitors to a site may allow owners of Internet sites to learn more about consumers than these consumers realize or would like. By sharing information, insurers and employers might be able to identify individuals interested in information related to specific illnesses, such as cystic fibrosis or HIV, and subsequently deny health coverage. It is wise to accept cookies only from trusted sites to protect privacy.

CASE 5: I know I have those guidelines somewhere ....

Where is that Red Book when you need it? Just before you order immunizations for your 4-year-old patient KJ, you note that he developed a rash last year after eating an Easter egg. Is it measles-mumps-rubella or influenza vaccine that can be administered even with a history of egg allergy? Unfortunately, you can find only a 1994 Red Book in your office, and you know that the recommendations for egg-allergic patients have changed in the last few years. You have lots of potential places to look--piles of journals, other out-of-date textbooks, and file drawers that need organizing. Your partner remembers that the recommendation was in the American Academy of Pediatrics (AAP) newsletter last year, and, yes, you have those, too--in a separate pile on the floor of your office.

One of the most gratifying uses of the Web is as a resource for guideline-based care. Most national recommendations for disease management and prevention are available in some form on the Web. For example, the comprehensive website of the Centers for Disease Control and Prevention (http://www.cdc.gov) covers topics from immunization guidelines to lead poisoning prevention strategies. The AAP site (http://www.aap.org) is also worth investigating. It provides links to many practice parameters and consensus statements. If your computer is equipped with Adobe Acrobat Reader you will be able to download, print, and distribute free brochures and guidelines that are identical to the ones these agencies would normally charge a nominal fee to send you. Most new computers come with the Adobe Acrobat Reader. Those who need to install it go to http://www.adobe. com/prodindex/acrobat/readstep.html, where the free installation is completed by supplying some basic information, then clicking on "download."

Consensus statements from associations and foundations dedicated to a particular disease or medical issue also can be downloaded free of charge from the Web.

CASE 6: No reason to go nuts

EL is your patient with terrible eczema. The child's father has been trying his best to help you understand what is triggering the boy's flares, and now you are certain peanut allergy is the culprit. You make a referral to a specialist, but the visit is months away. In the meantime, the father wants a list of foods that contain peanuts. You mention the obvious ones and tell him to read the labels of everything else the family buys. The father thanks you, but says he was hoping you had a list of often overlooked foods.

Of course, the Web can help you with this one! The Food Allergy Network website (http://www.foodallergy.org) is a great reference. You can find similar resources for food allergy and other conditions by searching a Web subject database. Support groups are another resource. Using the E-mail address of an allergy group, you can ask about specific foods. These groups also supply answers to frequently asked questions, such as "What should my child say when friends or their parents offer food?" Support groups also may make available handouts about particular aspects of a condition. For patients with Down syndrome and other metabolic or genetic disorders, for example, they offer recommendations for subspecialty follow-up.

CASE 7: Where is he now?

One of your favorite families has come to say goodbye. They are relocating to San Jose, CA, and are hoping you can recommend a physician for them. You remember that a friend of yours moved out West. How can you find out where he is?

Information about where your friend works--and also about where you work--probably can be found by searching for his name (or yours) at a few websites. One of us discovered this when a high school friend found him (at a temporary address, no less) by searching on the Web using the American Medical Association's On-Line Doctor Finder. This site, at http://www.ama-assn. org/aps/amahg.htm, is likely to have some basic information about most physicians. Remember that it is as easy for others to gather information about you as it is for you to collect information about them. It seems prudent to check what this information is and its accuracy. Enter your name into a search engine and see what comes up.

Other resources on the Web provide information about the accreditation status of managed care organizations and, through sites such as http://www.jcaho.org, about hospital accreditation by the Joint Commission on Accreditation of Healthcare Organizations and other groups.

CASE 8: distress signal

Last night, a hospital laboratory called to report a finding on your new patient JA, a 3-day-old boy who had a blood sample drawn for total bilirubin level in the afternoon. When you tried to contact the family, you learned that their phone had been disconnected. The value was alarming but not critical, and you want to talk with the family. Today, as you are about to ask the police to go to the house, you realize that you do not have an address for the family, although you do know the name of the town where they live.

For nonurgent access to a family, the Web site AnyWho, at http://www.anywho.com/resq.html and http://www.anywho.com/telq.html, can help to find a current address by searching for a patient's name or telephone number. From there, you can search for the phone number and an address of a neighbor. In this case, the next-door neighbor knew that the family was spending the night with the grandparents, who were easy to locate.

CASE 9: A potpourri of information

One of the residents you work with is trying to find a parent handout on scabies and also is looking for a copy of the food pyramid produced by the American Dietary Association. He asks you to tell him how to find these items on the Web. The real issue here, of course, is not how to find these two particular items, but how best to use the Web to answer any of the many questions that arise in everyday practice. This resident's needs form an appropriate last case for this article because the scenario allows us to address the general principles for locating information on the Web.

Searching the Web is like looking for a paragraph in a textbook. The two main approaches are to look up a topic in the table of contents or search the index. The table of contents of a book is analogous to a subject database, like Pediatric Points of Interest, PEDINFO, Medical Matrix, Yahoo! and others in the accompanying table. These resources collect URLS and arrange them in a hierarchy that is meaningful to a particular audience. Alternatively, you can consult an "index," by using a search engine such as Excite or HOTBOT to find specific occurrences of a word or phrase. Be aware that each subject database and search engine works slightly differently. Consequently, it's best to pick one or two of each of these two kinds of tools and learn how to use them.

In Case 9, scabies information is popular enough to be found using Yahoo! but the resources it cites are not comprehensive. A better approach is to use a search engine and to pick a handout whose URL suggests that it comes from a reliable source. For the food pyramid, you might try locating the American Dietetic Association (ADA) using Yahoo! and then search for the food pyramid within the ADA's site. (The URL for the ADA is http://www.eatright.org, not http://www.ada.org, as you might expect.)

Getting comfortable

The best way to expand your use of the Internet is to become familiar with your web browser. Start by spending about half an hour a week finding information resources that relate to something that interests you and looking at some of those we've mentioned. As an exercise, you might try to "solve" the cases in this article on your own; you probably will uncover sites--possibly more useful than those we have noted--that can be bookmarked for later use. Then write down the kinds of information you most often need to access in your practice. Spend the next few weeks surfing, to find sites that provide that information, and use your web browser to bookmark them. Learning how to search the Web using a subject database and remembering to bookmark a website are two of the most important steps in creating a customized "virtual textbook" for your office. Try using these Web resources when questions arise, or as you have time. You will soon be as comfortable browsing the Web as you are browsing the newspaper. Happy surfing!

DR. JOHNSON is Assistant Professor of Pediatrics and Biomedical Information Sciences, The Johns Hopkins University School of Medicine, Baltimore, MD.

DR. LEHMANN is Instructor of Pediatrics and Fellow, Division of Biomedical Information Sciences, at the same institution.

Kevin Johnson. Extend your clinical reach with the Internet. Contemporary Pediatrics 1999;8:67.