Diabetes Forecast December 2005

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FOR TYPE 1/TYPE 2

Adventures On The Internet—The Quest For Information

Searching for reliable health information online can be a journey fraught with peril. But with the right tools, you can find the gems without getting tangled up in scams and old wives' tales.
by Terri D'Arrigo

Searching for health information on the Internet can leave you feeling a lot like Indiana Jones: You have to clear a path through a jungle filled with obstacles, traps, and shady characters to get to the treasure.

But if you know what clues to look for, you can ease your journey through the cyberwilds and increase your chances of finding the information and friendly support you seek.

Choose An Approach

Different online formats lend themselves to different kinds of information. Which one you choose depends on what you're looking for and whether you want to interact with other people.

Do you want to learn about a drug your doctor has prescribed? Do you want information on the latest diabetes research? Perhaps you'd just like to communicate with other people who have diabetes and see how they cope.

Once you know what you're looking for, you can begin your search in the most appropriate place.

Web sites are the most common online medium. "Web" is short for "World Wide Web," which is a network on the Internet, and a Web site is a location on the World Wide Web. But there are a slew of other Internet formats you may not be as familiar with, including bulletin boards, chat rooms, listservs, and blogs. To learn more about them, see Translating the Terms below.

Where To Start A comprehensive list of reliable information about diabetes on the Internet is far beyond the scope of this article, but here are a few resources to get you started. American Diabetes Association http://diabetes.org The Association's site contains a wealth of information about diabetes treatment, research, and prevention. The home page links to the message boards. The site also hosts chats. Healthfinder http://www.healthfinder.gov Healthfinder is run by the U.S. Department of Health and Human Services (HHS) and contains a list of health Web sites HHS has evaluated and found to be reliable. MedlinePlus http://medlineplus.gov This Web site is a service of the National Library of Medicine and the National Institutes of Health and contains general health information and a directory of drugs. National Institute of Diabetes and Digestive and Kidney Diseases http://www.niddk.nih.gov This Web site is part of the National Institutes of Health and contains information about diabetes and other diseases.

How To Avoid Pitfalls

How do you know which Internet sites and sources are trustworthy? The experts suggest you keep the following questions in mind when surfing the Internet.

Whose site is it? "Look at the site owner's credentials," says Arturo Rolla, MD, endocrinologist at Beth Israel Deaconess Medical Center, associate professor of medicine at the Harvard School of Medicine in Boston, and moderator of a private diabetes listserv (http://health.groups.yahoo.com/diabetesworld). "What are their affiliations? Are they diabetes educators or doctors? Are they associated with a reputable hospital or organization? Are they affiliated with a medical school?"

There should be a clear and prominent note on the site indicating whether the site owners are health professionals, Rolla says. There should also be a disclaimer reminding you that the information on the site is not a substitute for your own doctor's advice. Beware of anyone who claims to be able to make diagnoses online.

This goes for all health Web sites, but it's particularly important when you're reading blogs.

"A blog is one person's thoughts and opinions. If you like what that person writes and opines, go ahead and read it, but remember that the information isn't vetted by health professionals," says Bob Hoeckele, manager of online communities at the American Diabetes Association and moderator of the Association's message boards.

Finally, if it's not clear who owns the site and there's no contact information listed, watch out. Responsible site owners don't hide.

Where'd they get their information? A reliable Web site will contain links to credible references. Click around. If a page links to a research study, what journal did the study appear in? Who publishes the journal? And when was the study published? If a study is more than a few years old, it might be obsolete. Remember that new medical and scientific information becomes available every day. Be suspicious of any site that claims to be the only source of information about a particular topic.

Are they selling something? This is a case of "let the buyer beware."

"If they're trying to sell you something and there's an 800 number, be careful, especially if they claim to have a cure for diabetes," says Rolla. "There are a lot of scam sites that claim to have herbal cures, particularly from China and India." Remember that there is currently no cure for diabetes.

Not all commercial sites are dangerous or unreliable, however. Almost all major pharmaceutical companies and health equipment manufacturers host Web sites that contain information about their products. Some of them post general information about diabetes as well.

"Some of the industry sites have good information," says John Zrebiec, MSW, CDE, associate director of the Behavioral and Mental Health Unit at the Joslin Clinic in Boston and moderator of Joslin's message boards. "But consumers need to be aware that when product sites are sponsored by a company, that company is indeed trying to sell you something. Just keep it in mind." (To access the Joslin message boards, go to www.joslin.org/756_891.asp.)

One quick way to tell what kind of site you're viewing is to look at the Web address. Most nonprofit organizations have Web sites that end in .org, university Web sites end in .edu, and government Web sites end in .gov. Most commercial sites end in .com.

A .com suffix doesn't necessarily mean the site owner just wants to get into your wallet, however. For example, the Mayo Clinic, the world's largest group practice, hosts a consumer Web site (www.mayoclinic.com) in addition to Web sites for its medical school and research centers.

Is it moderated? Reliable bulletin boards, chat rooms, and listservs have moderators to enforce the rules of polite communication and keep advertisers from cluttering up the service with unsolicited promotions called "spam."

Moderators and their professional qualifications are usually listed on the Web page that leads into the bulletin board or chat room.

"Ideally, the service would be moderated by a professional or team of professionals, including diabetes educators and physicians," says Zrebiec.

Yet freedom of communication is also important, he says. "When someone posts incorrect information, we don't take it off the board. We view it as an opportunity to learn, so we just provide the correct or appropriate response."

"The cream rises to the top, and after you've been reading awhile, it becomes obvious when advice from other [participants] is good or bad," says Hoeckele. "If something is way out there, we'll jump in and suggest that they call the Association's hotline or post a link to another page on the site where they can find correct information."

How did you learn about the site? Did you find the Web site on your own, or did a note from someone you don't know mysteriously appear in your e-mail, encouraging you to visit a particular site?

"Chances are a reputable organization is not going to seek you out. They put their information on their site for you to come to them," says Rolla.

If your gut tells you an e-mail or Web site is a bit off, try to verify the source of the information. For example, there are a lot of Web sites that mention a "Mayo Clinic Diet," and the "diet" has been distributed in thousands of unsolicited e-mails, but there is an official statement on the clinic's Web site explaining that no such thing exists.

One good way to find reliable sites is by word of mouth, Rolla says. "Ask people you trust, including your doctor, diabetes educator, or dietitian."

Your Turn

Once you find a site or forum you like, there are a few steps you can take to get the most out of it.

Come prepared. "If you have a question, give as much information as possible about what you're asking, just like you do with your doctor," says Hoeckele. "Provide a clear picture so that people can give their opinions."

For example, don't just say that you're having trouble getting your blood glucose down. Explain what you're doing to care for your diabetes, which medications or insulin you take, what time of day your blood glucose is high, and what the numbers are.

Play nice. It's a big Internet and you're going to run into all kinds of people with all kinds of opinions, says Rolla. "We encourage differences of opinion because that's how we learn," he says. "But every now and then we get people who have very fixed ideas. They think everyone should do things their way and they start fighting with everyone else."

In general, picking fights on the Internet (known as "flaming" or starting "flame wars") is strongly discouraged; get involved in one and a moderator may ban you from a site for being disruptive.

"The bottom line is that we want people to feel safe when they visit," says Hoeckele.

Follow up with your doctor. Always talk to your doctor or diabetes care team about health information you find on the Internet before altering your treatments in any way.

"If you are looking for emotional support or educational information about diabetes, the Internet is a worthwhile place to look, but I don't think it is the place to get answers for medical concerns," says Zrebiec. "For example, sometimes people post lab results on a board and ask what they should do, or they post symptoms and ask for a diagnosis. Those are things you should ask your doctor."

Use common sense. Finally, all experts agree: If something seems too good to be true, it probably is. Your instincts combined with a little cyber savvy will help you find the best health information the Internet has to offer.

Terri D'Arrigo is an associate editor of Diabetes Forecast.

Translating The Terms

Web sites. Web sites are made of different pages that you connect to by clicking on highlighted text called links. The first page on a Web site is called the home page, and all other pages can be accessed from there. Web sites often host other online media, such as bulletin boards or chat rooms. Most research centers, nonprofit organizations, hospitals, government agencies, universities, newspapers, and drug and medical supply companies have Web sites.

Bulletin boards. A bulletin board (also called a message board or discussion board) is a place where you can leave public messages for everyone who comes to the board to read. You can post a comment or ask a question, and other users can respond by posting their own messages. Many people with diabetes come to bulletin boards seeking information, support, and friendship.

Chat rooms. Chat rooms are places on the Internet where people can communicate with each other in real time. You can ask a question and others in the room will respond immediately. Chats may be structured, such as a scheduled question-and-answer session with a health professional, or they may be open. When a chat room is left open, anyone can enter at any time and start chatting.

Listservs. A listserv (no "e" at the end) delivers messages to and from users via e-mail. When one person posts a message to the list, everyone on the list receives the message. Many people with diabetes subscribe to listservs for news and support.

Blogs. Short for "weblog," a blog is an informal, public Web site where the writer ("blogger") shares his or her thoughts, opinions, and experiences. A blog can be written like a journal or diary, and there may be one or more entries each day. Most health blogs are personal accounts of how the blogger copes with a disease, although some blogs contain links to news stories and other health information. Readers can usually leave comments for the blogger, but most of the communication goes in one direction: from blogger to readers.