Special Report: The Web and You -- Health Information

Is the Web Bad for Your Health

The Internet is rife with health-related Web sites and online pharmacies. Don't trust your well-being to a cyber doctor until you read this story.

"Please turn your head to the side."

Point.

"Now cough."

Click.

"Again."

Click.

"Now take a deep breath and hold it."

.

And then, faster than you can say Health Maintenance Organization, the check-up is over. But rather than sheepishly pulling on your clothes and driving home, you turn off your computer and make for the refrigerator. Can you imagine how many more people would actually go to the doctor if it were this easy?

Last year, an estimated 26 million Americans--the vast majority of them women--logged on to the growing number of health-related Web sites in search of answers to what ails them. Many found information that helped them make important decisions about their health care. Others received advice that was outdated, misleading, or even dangerous.

Like everything else online, health sites can be good or bad. The question is, how can you tell the difference?

Paging Dr. Koop

When former U.S. Surgeon General Dr. C. Everett Koop forgoes a comfortable retirement to steer a Web start-up, you know health on the Internet is hot.

Just as financial novices flocked to sites like The Motley Fool in search of hot stock tips, average folks with nary a recollection of Biology 101 are browsing Drkoop.com, WebMD, and other sites for medical advice. And that is cause for concern. In fact, the American Medical Association is so worried that patients might be getting bad information online that it has decided to launch its own health information site early this year.

The Web currently has more than 20,000 health-related sites, including online drugstores. Until recently, these sites went largely unmonitored, and a number of minor and major scandals ensued.

In August 1999, Dr. Sybil Biermann, a cancer specialist at the University of Michigan, published an article in a professional journal in which she raised questions about the accuracy of medical information on the Web. Dr. Biermann and her colleagues searched 371 Web sites for information about Ewing's sarcoma, a rare bone cancer that typically afflicts children and young adults.

The study showed that roughly half the online material was irrelevant and 6 percent contained major errors.

In an interview with National Public Radio, Dr. Biermann described one such inaccuracy: "One site reported a survival rate of only 5 percent. Now this is a serious disease, but the survival rate has improved a lot over the last several decades, and we're looking more at survival rates along the lines of 75 or 80 percent. One could only imagine what a patient who had Ewing's sarcoma, or the parents of a child who had Ewing's sarcoma, would think when they ran across a site like that."

Inaccuracy of information at health sites isn't the only cause for concern.

Many sites hawk health-care products themselves or refer users to e-commerce partners and then take a cut of the sales. This practice raises questions about possible biases in the reporting. Last September, Dr. Koop came under fire from the New York Times for not disclosing receipt of commissions from companies featured on his namesake site. Dennis Upah, Drkoop.com's chief operating officer, says Koop and the site did nothing unethical and had changed the practice before the story even ran.

And finally, the entire online health field receives a black eye every time an online pharmacy prescribes drugs such as Viagra or Claritin without seeing the patient (see "Prescription for Trouble" for our experiences buying prescription drugs online). Last summer Congress heard testimony about online drug sales.

And in October, the Missouri attorney general's office won the first court decision against an online pharmacy, ThePillBox.com, for selling prescription drugs illegally.

The Good News

None of this is to say health sites are evil. In fact, the very doctors and experts who caution against misleading health information online often praise the Net for its potential to empower users, allowing them to make more informed decisions about their health care.

Gina Herring of Scottsdale, Arizona, was at a loss over her 3-year-old daughter Meghan's sleeping problems. Then someone recommended she read an article at OnHealth's Web site.

"I found an interview with an expert," Herring says. "Several parents asked questions, and [the expert] answered them in an intelligent and helpful manner.

A couple of parents were even going through the same things we were."

As she explored OnHealth, Herring found useful advice on other subjects important to her, including facts about another health concern. But she doesn't confine herself to one source of medical information. "The most help I received with Meghan," she says, "came from other parents on the alt.parenting.solutions newsgroup. There is just nothing like talking to someone who has been through what you are going through and who can give you firsthand advice on what works and what doesn't."

Doctor, Give Me the News

So where on the Web should you go for health-related information? And what should you keep in mind as you sift through the mountains of material? To answer these questions, we spent two months visiting a number of general health sites. We focused on the ones that researchers at Jupiter Communications, Media Metrix, and PC Data report are the most popular.

Though we can tell you what's good and bad about the way a site works, we're not medical experts. So we asked a doctor to evaluate the sites from a medical standpoint. Dr. Peter J. Stuart is an obstetrician/gynecologist and attending physician at North Country Hospital in Newport, Vermont.

At each site, we searched for specific information, paying attention to the timeliness and breadth of the search results. We also visited the sites' community centers where users discuss health topics and checked out any areas where doctors field questions.

We liked some of the sites very much. The Mayo Clinic Health Oasis (www.mayohealth.org) provides what we consider to be the most comprehensive and accessible health information online. However, it lacks the interactive tools--such as message boards and online chat sessions--found on another of our favorite sites, AllHealth.com. Another convenient AllHealth.com feature, called My Health Records, lets registered members store encrypted medical records and prescription information online. The site will fax free copies of these records to members wherever they may need them--in the emergency room, for example.

Doctor Maybe

Some sites we didn't like. For instance, AmericasDoctor.com has made a name for itself by providing visitors with free, one-on-one, real-time chats with doctors. But we were unimpressed.

Ironically, part of the problem stems from the site's ethical and responsible operation of these Ask the Doc online consultations. It clearly states that its online doctors cannot diagnose or prescribe treatment, only give general information. But this precaution makes the consultations no more useful than articles published on the site. What's more, users have no idea who is on the other end of the chat line. You never get a name or credentials. The site itself says simply that these health consultants are "board-certified or board-eligible physicians." The latter term doesn't mean the doctors aren't practicing, just that they haven't completed all their board tests. When we tried the live chat feature, we asked our physician if he or she was board-certified or board-eligible, but the doctor ignored the question completely.

As you evaluate health sites on your own to determine where you want to turn, focus your attention on a few general areas: ethics, content, community, and commerce. And try out several health sites before getting comfortable.

Ethics: Who Can You Trust?

In general, large health sites like the ones we looked at are principled. They do not attempt to replace traditional doctor-patient care. The best sites make this point clear on their front page with language such as, "You should not rely on this information as a substitute for personal medical attention." Other sites have links to such a disclaimer, while ThriveOnline had no obvious disclaimer.

Despite efforts to disseminate information responsibly, health sites have come under fire from doctors' groups, consumers, and other watchdogs concerned that online health care be free from such questionable practices as conflicts of interest between sites and their sponsors.

Rebecca Farwell, general manager for OnHealth, welcomes the scrutiny. "Health online is different from entertainment, so sites have a greater responsibility," she says. "There's a certain amount of warranted concern when people are trying to discern good information from bad. But users are more savvy than the medical establishment lets on."

Until recently there has been little effort to establish ethical guidelines for these sites. In October, Dr. Koop called on competitors to join him in establishing a code of conduct. The following month, an alliance of health Web sites calling itself Health Internet Ethics, or Hi-Ethics, announced that it would formulate guidelines to evaluate the reliability of online health information and separate ads and information more clearly.

In the meantime, the nonprofit group Health on the Net Foundation in Geneva, Switzerland, has developed a seal of approval for health sites that choose to submit to its scrutiny. The HON Foundation's eight principles require, among other conditions, that health advice be given only by qualified professionals (or if not, that the deviation be disclosed), that information be sourced and dated, and that advertising be obvious and separate from editorial content.

Six of the major sites we visited carried the HONcode seal, including Drkoop.com, Mayo Clinic Health Oasis, OnHealth, and WebMD. Those that do not have the seal include AllHealth.com, AmericasDoctor.com, and ThriveOnline.

Health sites must also protect visitors' privacy. While all the sites we used have privacy policies, only two--WebMD and Mediconsult.com--had their policies reviewed and audited by Truste (www.truste.org), a group that attempts to monitor the policies of Web sites.

Should you avoid a health site that does not carry the HON or Truste logo? Not necessarily. We liked AllHealth.com and ThriveOnline, and neither site carries the seals. However, such logos demonstrate that an independent group has at least audited the site to ensure that it measures up to some standards.

Content: Quality or Quantity?

The best way for a health site to inspire trust is by publishing reliable content. We're not impressed when a search pulls up 536 matches, as WebMD did when we searched on peptic ulcer. We just want clearly presented, relevant, and timely information (which we didn't get a lot of from WebMD on the topic of peptic ulcers).

Several sites make important medical advice easily readable. One of the best is Drkoop.com, which distills esoteric professional articles to their key facts.

The site's columns, including those by Dr. Koop himself and ABC News medical correspondent Dr. Nancy Snyderman, are also informative and readable.

We were surprised at how accessible the information on Mayo Clinic Health Oasis is, considering that Mayo Clinic is chock-full of doctors, not editors.

InteliHealth, which also originates at a bastion of medicine--Johns Hopkins University and Health System--is not as easy for the average user to comprehend.

Many sites publish articles from outside sources. Discovery Health, which receives much of its content from InteliHealth, also takes information from sources like the National Institutes of Health. We found some of the best material at OnHealth; it came from the Cleveland Clinic, one of several hospitals that provide OnHealth with information on specific conditions.

Not everything you read at many sites is the definitive word on health and medicine. So always research multiple sites, and never rely on any single article.

Jackie Porter of Toronto suffers from fibromyalgia, a syndrome characterized by chronic pain in muscles, ligaments, and tendons. Porter takes issue with Drkoop.com's description of fibromyalgia which the site licenses from World Book Encyclopedia.

"It says 'fibromyalgia is also known as fibrositis.' Fibro used to be referred to as fibrositis back in the days when they believed it to be an inflammatory disease, which it is not," she says. Despite this criticism, Porter still likes the site. "Drkoop.com uses real people to write its 'A Day in My Life' articles, including one about fibromyalgia," she explains.

Health Info Goes Bad

Information, whether prepared by the site or an outside source, should always be dated so you can tell how currentit is. The source and the source's credentials should be prominently displayed.

The sites we visited generally post the date the piece was originally prepared.

Some also list the date it was last reviewed (often the same date). Some, such as OnHealth, even post the publication dates alongside the search results so you can zero in on the latest information. The question--how old is too old?

At some sites, the information was disappointingly dated. ThriveOnline had some articles that went back to 1993. And in a search at WebMD, the first match was a piece from 1991. Other sites stay more current. Drkoop.com's Dennis Upah says everything at his site is reviewed annually; some topics are reviewed quarterly.

Support Net

The community sections of health sites, which provide user-to-user features, are ideal for sharing ideas with people like yourself and finding support. Some have chats where you can question specialists.

At OnHealth, such chats happen daily. Other sites also host regular support chats, usually moderated by a frequent user whom the site has screened. Each week Drkoop.com hosts over 130 chats on topics from sleeping disorders to agoraphobia. Upah likens these chats to a hospital cafeteria, not a doctor's office. The chat leaders steer participants toward information but do not try to diagnose, suggest treatment, or argue with users. "The Internet should not be used to practice medicine," says Upah.

Not everyone with a specific ailment can be online when their topic comes up, but the transcripts from these chat rooms are often excellent sources of ideas.

Andrea Frankel of Nevada City, California, says she doesn't "do chats," but she finds the transcripts at WebMD helpful. Recently she read about a drug to help with her asthma and learned that help with migraines could be a beneficial side effect. She then combed the Web for people who'd used the drug.

The feedback she received was positive, so she asked her doctor for a prescription. "It's wonderful stuff," she says. "I can now breathe deeply."

And, she adds, she can drive on the freeway without getting migraines from the car fumes.

Discussion groups where people post messages are also good sources of support.

The sites normally moderate them, and users must adhere to certain rules, such as no cursing and no personal attacks.

Ian Sutcliffe, president of Mediconsult.com, says that his site takes moderating discussion groups a step further. Every message is edited before it is posted. He says criticism of a doctor, if the doctor is named, is not allowed. "We would send that person a note asking if they would repost the message without the doctor's name," says Sutcliffe. As it happens, the company operates sites for doctors, but Sutcliffe insists Mediconsult.com is not trying to protect the reputations of its other customers.

In addition, Sutcliffe says, his moderators edit posts for medical content. He describes one post that never saw the light of day: "A woman came on with breast cancer and came back [two months later] and said she'd been drinking her own urine and the breast cancer was gone." Sutcliffe says that the site did not post the message because it was protecting users from unproven and potentially dangerous advice.

Commerce Breeds Conflicts

In a press release last spring, Jupiter Communications analyst David Restrepo said of health sites, "Commerce is where the dollars are."

For better or worse, he's right. Every site we looked at--except Mediconsult.com, ThriveOnline, and WebMD--runs banner ads for products and services its articles may discuss. Commercials don't necessarily imply misconduct, as long as the advertising doesn't influence the editorial content.

Each site we spoke to insisted its ad and edit departments are kept separate.

Every site we visited except ThriveOnline also sells products or points visitors to e-commerce partners.

Finally, sponsorship is a popular element of health sites. Drkoop.com's allergies section is sponsored by Claritin, the allergy medication; LaserVision Center sponsors the Mediconsult.com eye care center; and much of The Health Network is sponsored by Tylenol. Again, each site insists that money does not influence editorial, but even the appearance of influence can taint a site and make it seem less reliable.

At The Health Network, the line between Tylenol's sponsorship and editorial content sometimes blurs. On certain pages that displayed a "Sponsored by Tylenol" logo, we clicked on links to pain-related articles, expecting to find editorial content. Instead, we found ourselves on the Tylenol Web site. Anne Russell, The Health Network's editorial director, says she believes that the labeling is clear enough. But if we were confused more than once, other visitors might be similarly thrown off.

Prognosis

For now, going to the doctor without actually seeing a doctor is still just a fantasy. But the Web can play a major role in making you a smarter, more informed patient. And despite some ethical dilemmas and the occasional shortcoming, the major health sites are excellent resources for learning about health issues and even for help in making life-and-death decisions.

But remember to explore your options as you would when dealing with any other media outlet. Learn the strengths, weaknesses, and potential biases of each site. Take the time to discover where you feel most comfortable, then make that location your home base.

Just as you would with a real live doctor, don't be satisfied with a single opinion. Gather as much relevant information as you can from a variety of different sources. And of course, don't forget to make an appointment for your annual check-up.

Brad Grimes is an executive editor for PC World. Dr. Peter J. Stuart is an attending physician at North Country Hospital in Newport, Vermont. Glenn McDonald is a freelance writer in San Francisco.

The Doctor Is In and Online

We asked Dr. Peter J. Stuart to use the health sites we reviewed and tell us what he thought. Overall, he was pleased with what he found, but he had reservations. "The biggest dilemma facing health sites is the possibility that people may try to treat themselves based on advice they find online, despite posted disclaimers," he says. "People should use these sites to gather information to take back to their doctor. They are a springboard, not an answer."

Prescription for Trouble

Our reporter combs the Web for quick fixes--they shouldn't be this easy.

Sift through the spam in your in-box for the past few months, and you're likely to come across something like this:

"Online Viagra prescriptions! Fast! Inexpensive! Totally Confidential!"

The scary part--it's true. Buying certain types of prescription drugs online is ridiculously easy, as we confirmed while trolling a handful of the hundreds of Web sites hawking such services.

* It's simple: You complete an online medical questionnaire, provide a valid credit card number, and place your order. The cyberdrugstore forwards your digital order form to an affiliated physician. Once the doc approves the prescription, your order is filled and delivered to your door, usually within 48 to 72 hours.

* How can this be? Believe it or not, with certain types of drugs, it's perfectly legal for a doctor to issue a prescription to a patient whom he or she has never seen. These medicines are considered "lifestyle drugs," and they're meant to improve quality of life rather than cure disease or treat symptoms. Examples include Viagra; Claritin, for allergies; Celebrex, for arthritis pain; and Propecia, for male baldness. So long as nothing in your medical questionnaire presents a problem, these outfits take you at your word and issue the prescription. But we found that even if your questionnaire reveals you're not a good candidate for a drug, you may still be able to get it at certain sites.

We placed orders for Viagra, Claritin, and Celebrex at seven Web sites that we found in a Yahoo search. We skipped the trusted names like CVS and Drugstore.com and shopped at sites we'd never heard of but which promised great deals.

* First the good news: All deliveries came exactly as ordered, the correct dosages and quantities. We even had a pharmacist verify that the drugs were real, and prices were comparable with what you'd find in a real-world drug store.

* The bad news: Sadly, several of our prescription drugs came with surprisingly little documentation--in more than one case, just a half-page photocopy of directions and precautions. One site did exactly what we were afraid of: It delivered our Viagra order even though we indicated in the medical form that our "patient" had a history of ulcers. The medical fact is, patients with active stomach ulcers are generally advised not to take Viagra.

So what's being done to prevent these dangerous lapses? Precious little. In testimony before a House of Representatives subcommittee last July, the American Medical Association representative Dr. Herman I. Abromowitz testified, "Every day, patients are endangered when they are permitted to receive prescription medications via the Internet without adherence to proper safeguards that ensure good medical practice."

Some states have attempted to block online sales, but as with so many Internet issues--online gambling, for example--no laws apply directly to the situation.

As of now, there is little to prevent any Web pharmacy from selling drugs to anyone who's willing to pony up the cash. In our experience, it's a fact that these drugs can get into the wrong hands. You'd best consult a real doctor before getting any prescription.--Glenn McDonaldTips for Healthy Living OnlineSurfing for health information is not the same as surfing for good deals on airline tickets or home electronics. This is your well-being we're talking about. So as you sort through the thousands of health-related Web sites, keep these precautions in mind.

* Get referrals. Health-related newsgroups are often a good source for health sites. Start at Deja.com and search on words related to your health concern, then read what other people have to say and ask them for recommendations.

* Shop around. Health sites will try to keep your attention--for instance, by letting you customize their home page. But don't get too comfy. In cyberspace it's easy to find a second or third opinion, so you should. Research various sites to form a more complete picture, and gather all the info you can.

* Ask questions. If you're having trouble making sense of something at a health site, contact the site. Shoot an e-mail or look for a phone number. If you can't find a phone number, be wary about using that site.

* Check the date. Like milk, some medical information goes bad over time as new research becomes available. Look for two dates on any health article you see online: the date it was published and the date it was last reviewed for accuracy. Few sites disclose the latter, so if the original publication date was four or more years ago, consider the information suspect and start looking for more up-to-date articles.

* Chat with care. In chat rooms and online discussion groups, ask yourself who the other participants are. Be careful of drug companies hawking their wares, doctors promoting a procedure, or plain old loonies extolling the curing power of your toenails. If possible, learn from the Web site how it screens postings.

And when you choose a screen name for chatting, don't choose one that might hint at your real identity.

* Check credentials. Most of the big sites have an Ask the Doc or Ask the Experts section where you can post questions. Make sure you know who is dispensing the answers and what their credentials are. If this information isn't stated clearly, ask for it, or consider the advice suspect until you get a second opinion.

* Print it out. When you find an article you think pertains to your specific condition, hit the print button and take it to your doctor at your next visit.

* Just say no. Although it might save you embarrassment to buy Viagra or another prescription drug anonymously from a little-known site that merely requires you fill out a form, don't cut any corners. Remember, many people taking Viagra encounter side effects associated with preexisting conditions.

You could be one of them. Always consult with a real live doctor before medicating.

* Stick with names you trust. Take the time to find two or three sites where you're comfortable and you get good advice. Then stay with them. And if you're buying supplements, prescription or nonprescription drugs, or other health supplies, look for the pharmacy sites with big names like Drugstore.com, PlanetRX, and CVS.

* Go to a specialist. We looked at general consumer sites that try to cover all your health-care needs. But sometimes it's best to get in-depth information from a site that specializes in a particular area that interests you. For instance, if you want information about cancer, it's probably best to visit sites for the American Cancer Society (www.cancer.org) or the National Cancer Institute (www.nci.nih.gov).

--Brad Grimes

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