Health information on the Internet can help save your life. I'm living proof.

A few years ago, over a period of months my doctor treated me for a variety of medical symptoms. It seemed like as soon as one was under control, another developed. Finally, based on my symptoms, my medical history, and recent tests, my doctor suggested a diagnosis that might explain everything. I had an ignorant, layperson's view of the illness he mentioned, and rejected his diagnosis.

I continued getting more and more sick – and more and more scared. In desperation, I turned to the Internet. Within minutes, I found a National Institutes of Health site that offered several documents about the illness my doctor had mentioned. I only had to read the first two pages to realize that my doctor's diagnosis was correct. I immediately returned to him and started treatment – a treatment that I'm fully convinced saved my life. Today, with ongoing treatment I'm largely able to control my illness and can lead a normal life.

My case is an extreme example of the benefits available from Internet health information. Yet millions of people have similar – if less dramatic – stories to tell about how health information they found on the Internet has helped improve their lives.

People have found background information about an illness that struck them, news about new drugs or research developments that could help a loved one, or simply information about how to pursue a fit and healthy lifestyle. And just as important as the hard-core medical information, they've found support, comfort, and insights through the hundreds of Usenet newsgroups and mailing lists where people with specific illnesses can exchange messages. Some doctors are even starting to use the Internet to communicate with their patients.

Yet for all the promise that health information on the Internet offers, there also are perils. There's a lot of bad information floating around – everything from information that's just plain wrong to fraudulent claims by quacks, hucksters, and con artists. And separating the junk from the good stuff isn't always easy.

How to Judge the Quality
of Internet Health Information

So how do you, as a consumer with no formal medical training, judge the quality of health information you find on the Internet? Most importantly, you have to use your common sense. If a claim that you read sounds too good to be true, it probably is. If a "cure" for a particular illness falls outside commonly accepted medical knowledge, steer clear. And if someone promises a "miracle cure," stay away. Much as you might want to believe in miracle cures – especially when you or someone you love is desperately ill – they don't exist.

When seeking health information on the Internet, you're particularly vulnerable because in many cases you're doing so in response to a medical crisis involving yourself or someone you love. You're stressed, you're frightened, and you may not have had a lot of sleep lately. You may jump on the Internet, desperately looking for information and – most importantly – looking for a cure that will make the medical crisis disappear. Under these circumstances you may be tempted to suspend your normal good judgment and latch onto anything that promises hope, no matter how outlandish it seems. You must resist that temptation, as hard as it is, and carefully assess any information that you find.

Sometimes it's easy to determine whether a piece of health information is reliable. For example, if someone sends you an unsolicited e-mail message trying to sell you some health product, throw it away. Unscrupulous folks send millions of these unsolicited messages, known in Internet circles as spam. It costs virtually nothing to send the messages, which makes them real popular with scam artists, hucksters, and their ilk. No reputable company sends spam.

But what about when you're out on the Web, surfing among various health sites? How do you judge which are trustworthy?

It would be great if a single, perfect indicator of quality existed
– or even a small group of such indicators that you could check off one at a time when examining a site. But unfortunately, the information on the Internet does not lend itself to a short checklist of quality indicators. Instead, when assessing a document you must consider a whole assortment of factors, and decide which are applicable – and most important – in a particular case. Here are just some of the issues you may want to keep in mind:

  • Is it clear who operates the site? In some cases, the suffix on a site's address provides clues. For example, a site whose address ends ".edu" is operated by an educational institution, ".gov" indicates a government site, ".org" signals a site run by an organization (usually a nonprofit group of some kind), and ".com" indicates a site run by a commercial firm. If you can't figure out who's responsible for a site, be wary.

  • Is the site's operator reputable? Sometimes this is easy to determine. For example, the American Heart Association has a long-standing reputation as a fine organization, so you can assume the information on its Internet site is reliable. But what about a site operated by an organization or individual you've never heard of? The site's information isn't necessarily bad – just be a bit more careful when looking it over. Many great health sites are operated by private individuals with no formal medical training but a strong personal interest in a particular disease.

  • Is the site operated by a pharmaceutical company or other business that's really using it to push a particular product? If so, be aware that the information may be biased.

  • Does a site operated by a legitimate, nonprofit organization receive funding from a pharmaceutical company or other firm? Many do, and this money can lead to conflicts of interest.

  • Does the site list a postal address, e-mail address, and phone number where you can get more information? If these contact details are missing, watch out.

  • Who wrote the specific document you're reading? What are the author's credentials, affiliation, or background? If author information isn't provided, be extra careful.

  • What was the author's likely motivation for placing the information online? Was it simply to educate, or was it to promote a particular point of view or sell a product or service?

  • Does the information you're reading conflict with commonly accepted medical knowledge? If so, is there strong evidence supporting its claims?

  • Do other sources confirm the accuracy of what you've found online? Confirmation can be provided by other Web sites, your doctor or other medical professional, recognized medical journals, and other sources. However, keep in mind that just because you find the same information in two places doesn't prove it's true.

  • Does the information appear to be thorough and complete? Sources that only provide a partial picture are especially dangerous when dealing with health information.

  • When was the document written, and when was it placed on the Web site? With medical knowledge advancing so quickly, out-of-date information can be incomplete or even dangerous.

  • Is the site updated regularly? If the last update occurred months or even years ago, be careful.

  • Does the site exhibit the common signs of quackery? There are many signs: testimonials ("I've never seen anything like it – it's simply amazing!"), guarantees ("We absolutely guarantee that you'll lose one inch of fat in 24 hours!"), and claims of persecution ("The medical establishment doesn't want you to know about this!"), among others.

Special care is required when using Internet mailing lists, newsgroups, and chat rooms. All of them can be wonderful sources for support and information, but they're also very popular with hucksters and con artists. Newsgroups and chat rooms are especially popular targets, since they're usually not moderated. When reading messages from mailing lists, newsgroups, or chat rooms, always keep in mind that frequently no one "polices" the postings, people who post can claim to be anyone they wish, and any advice posted is just one person's opinion. In other words, take anything you read with a big grain of salt. You can't be too careful.

Of course, it pays to assess carefully the quality of medical information you get from any source – the Internet, popular magazines, newspapers, medical journals, government publications, and so on. Internet information isn't inherently more or less reliable than information from other sources. In every case, the most reliable way to check the accuracy of health information you find – whether from the Internet or elsewhere – is to discuss it with your doctor or other medical professional.

How to Use This Book

How to Find Health Information on the Internet is divided into four sections:

  • Directories, Search Engines, and Reference Sources – The specialized health directories and search engines described in this section are great places to start a search for health information on the Internet. Other highlights in the section include listings for general health sites, medical journals and news sources, and reference sources.

  • Conditions, Diseases, and Illnesses – Sites in this section provide specialized information about specific health problems ranging from AIDS to substance abuse.

  • Prevention and Treatment – This section focuses primarily on staying well. The sites target such topics as children's health, fitness and exercise, men's health, nutrition and diet, travel medicine, and women's health. Sites that discuss specific treatment methods, such as prescription drugs and transplantation, also are included.

  • Health Care Issues – Health care is one of the hottest topics being debated today, and sites in this section offer information about such issues as death and dying, environmental health, ethics and fraud, health care policy, health insurance, occupational health and safety, and smoking.

Within each section, chapters are arranged alphabetically by subject. However, you should check the index for topics of interest because sites frequently have files about numerous subjects.

Basic access information is provided for each site. This information varies from site to site, but you will find the following whenever it's applicable:

  • Access method(s) – The tool(s) you can use to access the site, such as the World Wide Web, Gopher, FTP, Telnet, and E-mail.

  • To access – The site's address(es) on the Internet.

  • Mirror – Other Internet addresses where the same material is maintained.

  • E-mail – The e-mail address where you can send questions about the site.

Two other pieces of access information are provided for mailing lists:

  • Subject line – The word(s) you must type on an e-mail message's subject line to subscribe to a mailing list. The words you must type are in bold type. If this line is blank in the instructions, leave it blank in your message as well.

  • Message – The word(s) you must type in an e-mail message's message area to subscribe to a mailing list. The words you must type are in bold type. Any words that are in italics you must replace with the correct information. For example, if the message in the instructions reads

subscribe listname firstname lastname

you must type subscribe followed by the list's name, your first name, and your last name.

A Final Word

According to the National Health Information Center, half of all deaths in the United States are caused by factors that people, either individually or as a society, can control. But to take control of your health, you first must be educated about a wide variety of issues. What better education source than the Internet, where you can quickly and easily download articles from medical journals, reports from the National Institutes of Health, and other high-quality material? And where, if you're so inclined, you can find a forum for virtually every medical condition where you can exchange information, questions, and support with other people?

Yet you must remember that the Internet is only one tool in your quest to become a well-informed health consumer. Many other tools also exist – paper journals, books, commercial databases – and you must use them all if your goal is to become truly educated about health issues. And most importantly, you must discuss what you learn with your doctors so that they and you, working together, can make educated decisions that help you take control of your health and your life.

 

 
 
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