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They want access to online health information, but they can't always distinguish between well-established clinical protocols and quackery.
They want access to online health information, but they can't always distinguish between well-established clinical protocols and quackery.
The Internet promises to touch every aspect of a physician's professional life, from patient relations to access to clinical studies, from billing to patient records, from marketing to e-mail.
To help you make sense of what may be the most profound force in medical practice today, we're kicking off a new series with this article on helping patients navigate the Internet. Future installments, which will run in our first issue of every month, will look at such topics as online patient charts; Web-based electronic medical records; services that electronically connect doctors with health plans, hospitals, and other providers; and online supply purchasing.
No doubt you've had patients query you about health information they've gotten off the Internet. Maybe you welcome the exchange, figuring that an informed patient will take better care of herself and stay healthier. But no matter what your attitude, you need to accept these conversations as part of the job. If there's one thing you can count on, it's having to deal with more and more Internet-informed patients.
A Harris Poll found that 70 million adults used the World Wide Web to find health information between June 1998 and June 1999. And the numbers grow each month. So if you don't know how to deal with these exchanges gracefully, you risk turning off a lot of patients.
That's especially true if you practice in an area like Silicon Valley, Austin, TX, or Manhattan's Silicon Alley, where you'll have to work hard to keep up with your patients. But even if your patients aren't computer literate, you can't afford to ignore the Internet. Eighty-year-old Mrs. Smith may not be surfing the Web, but chances are her 50-year-old daughter or 25-year-old granddaughter is doing it for her, says physician and online health specialist Tom Ferguson of Austin, TX. Ferguson is author of Health Online: How to Find Health Information, Support Groups, and Self-Help Communities in Cyberspace (Addison-Wesley, 1996). He's also a professor of health informatics at the University of Texas Health Science Center in Houston, and publisher of The Ferguson Report, a free online newsletter (www.fergusonreport.com).
"This is the real world," says pathologist George D. Lundberg, who last year moved from editor of JAMA to editor-in-chief of Medscape, an online information service for health professionals and consumers. "There's no way to stop it. If you throw up your hands and get angry, you're just going to alienate patients."
If your patients' Internet forays make you edgy, it could be because you recognize there's more going on than just research. In health care, as in other industries, knowledge is power. With so much information newly and instantly available to patients on the Web, guess where the power is shifting?
Thanks to the accessibility of information, "the doctor-patient relationship is at a major point of change right now," asserts Ferguson. "An authoritarian style of doctoring was quite appropriate when the typical physician had a dozen more years of education than the typical patient. But that's no longer the case. Many patients today are just as well educated as their physicians. They know how to research, evaluate information, and make their own decisions. We need to learn how to relate differently to those patients and be willing to learn from them," he says.
Patients who do take the trouble to read up on their health expect to participate in the discussion of treatment options and share in the decision-making. That's not necessarily a bad thing. Sure, you may have to spend additional time explaining why a course of treatment advocated by some Net fanatic may be completely inappropriate for your patient. But there are many instances when a patient's computer research can save you time and increase your effectiveness, says Ferguson.
Take a patient who has a condition you rarely encounter and has put in 20 hours a week for a month doing research and speaking with experts, perhaps via chat-room discussions. Why not tap her expertise? asks Ferguson.
Some patients have the time to track down even the most obscure health care information on the Web. You don't. How do you stay a step ahead so you can answer questions intelligently? "You can't," says Philadelphia internist David B. Nash, associate dean at Jefferson Medical College in Philadelphia and co-author of Connecting With the New Healthcare Consumer (McGraw Hill, 2000). With more than 70,000 sites for health care information, it's impossible to review everything that's out there. The best you can do is ask patients to bring you printouts of the information they've found so you can go over them together, he says.
Alternatively, consider subscribing to a service designed to alert you to what patients are reading on the Internet, as well as what they've seen on last night's news or this week's episode of ER. Cambridge, MA, internist Joseph Maloney favors MD Consult (www.mdconsult.com) for that purpose. He leaves a computer on all day in his private office so that he can use free moments to read the service's reviews of recent health-related media coverage, or print out the patient education handouts available at the site. The subscription costs him about $200 a year.
The service "has certainly elevated my ability to respond to patients," says Maloney. He considers that important because patients in his markethome of the Massachusetts Institute of Technology and numerous high-tech start-upsexpect him to keep current.
Of course, if you've never browsed the Web yourself, it's time to start. "Jump in," advises Ferguson, who works with physician groups and hospital staffs who want to increase their Net savvy. If you find the Web intimidating, ask a friend or colleague to help you. "Start by looking up information on something funlike stocks or the hot new sports cars. Keep at it until you start feeling comfortable with this new medium," he says. Then spend time "listening in" on online support communities for people who have the conditions you encounter in your practice. Check out the sites your patients frequent most often. If you don't know what they are, add the question to your patient information form, says Ferguson.
Train yourself to identify the sponsors of each site you visit and the advertisers, so you can help patients discern a site's commercial slant. You might also want to look for the Health On the Net Foundation's "HONcode" symbol. This nonprofit organization awards its stamp of approval to sites that meet certain quality and reliability criteria.
It's natural to want to steer your patients to the sites you consider best. Be careful that you don't come across as trying to dictate their choices. You need to recognize that what you value, by virtue of your medical training, is not necessarily what patients will value. "Don't tell patients that certain sites are unacceptable," says Ferguson. "Most patients feel that's for them to decide." It's far more effective for you to share your favorite sites with patients, and ask them for theirs. (For one expert's recommendations of patient-friendly sites, see the listing below.)
The best way to influence choices is to establish a good doctor-patient rapport, says Lundberg. To that end, "be accepting, supportive, and not resistant" toward patients' efforts to educate themselves. "Tell patients you're pleased that they care about their health. Then say, 'Let me suggest these sites. I find them trustworthy,' " Lundberg recommends.
Adds Maloney: "You never want to give patients the impression that you won't welcome any conversation they want to have about their health. Nor should you dismiss the information they collect. Remember, they've spent hours at their computer getting it."
To help patients become more discerning in general, consider developing a handout to guide their Net surfing (see the sample letter at end of story). Make sure you tell them that even sites with no advertising may be misguided. Some are the handiwork of people who are champions of a particular approach or therapy. But that individual's enthusiasm is no guarantee that the approach will bring results for your patient.
What if the patient is considering a treatment or course of action that's potentially harmful? "Let him talk himself out," says Maloney. "Then, in a low-key way, mention potential risks. Tell him, for instance, that the medication can cause seizures. Things like that usually get the patient's attention."
If patients ask questions you can't answer immediately, tell them you'll speak with someone who knows a little more about the subject and will get back to them, says internist Osbourne A. Blake in Inglewood, CA. Then make good on your word.
Blake says he browses Medwatch (www.fda.gov/medwatch) and MD Consult to keep up to speed, and he bookmarks some of the links. He thinks the best way for a doctor to steer patients to the most helpful sites is to set up his own Web site, and put in the links himselfa project he's working on now.
Clearly, Blake is comfortable with his Web-surfing patients and doesn't mind explaining to some that the treatment they're convinced they need may not help at all. "The more information patients have, the more comfortable they'll feel, and the more they'll take part in managing their illness," he says.
Blake tells of a patient who had trouble managing his hypertension until Blake referred him to two Web sites from the American Heart Association and the National Institutes of Health. "At the very next visit, he told me what his goals were to bring his pressure down. He said that if he lost 10 pounds, his pressure could drop by 10 mm Hg," says Blake. "Sometimes, patients educate you on treatments."
Encouraging patients to stay informed about their health "is the best way to maximize the 12-minute encounter," says Donald W. Hackett, president and CEO of drkoop.com (www.drkoop.com), one of the most heavily trafficked health information sites. "When a patient has knowledge of what ails him, he can begin the discussion at a higher level." In other words, physicians may spend less time explaining the basics to such a patient, and can often launch right into the discussion of the care plan they want to establish. While online health information won't change the SOAP process, it can make the objective portion more productive, adds Hackett.
Many patients with chronic or rare disorders have found online support groups invaluable. Online expert Tom Ferguson studied the most frequent users of Sapient Health Network's online interactive support groups for people with chronic and serious illness. (Sapient is now part of Healtheon/WebMD, a company that connects physicians and consumers with health plans online.) The 191 respondents from Sapient rated the online support communities more helpful than physicians in 10 out of 12 categories.
The categories included convenience, cost-effectiveness, emotional support, compassion/empathy, help in dealing with death and dying, medical referrals, practical coping, in-depth information, and "most likely to be there for me in the long run." In the remaining two categories, it was specialistsnot primary care doctorswho ranked highest. The two areas were helping diagnose a condition correctly and helping manage a condition after diagnosis. (For more details, read "E-patients prefer e-groups to doctors for 10 of 12 aspects of health care," in the March 1999 issue of The Ferguson Report.)
Primary care physicians shouldn't worry much about the results yet, says Ferguson. The survey respondents are far more computer literate than the typical patient. However, the results do predict the general trend for the future, he says. And they show how much your sickest patients currently rely on outside support.
The relevant question for physicians is whether to refer patients who can use extra support to online groups and, if so, to which ones. There's the conservative point of view, espoused by physicians like George Lundberg, who fear that unsupervised groups "can create a lot of mayhem."
Then there's the populist perspective of physicians like Ferguson. In his book, Ferguson predicts that the primary caretaker of the future will be "the health-active consumer, the concerned and supportive family caretaker, the neighborhood natural helper, the corporate wellness professional, the online self-help group facilitator, the newsgroup coordinator, the network [systems operator], the Web page creator, and, perhaps, other key players yet to evolveworking in cooperation with a new generation of supportive health professionalswho will serve as the real primary practitioners."
Hackett of drkoop.com likens unsupervised chat groups to waiting room conversations, and moderated online discussions to consultations where patients talk one-on-one with a medical expert. He says patients benefit from both. "Individuals value the opportunity to share and learn with others. Certainly the tone changes when there is no trained professional." Support groups at drkoop.com, he says, are all led by an individual who has extensive knowledge of a condition, such as a woman who has had breast cancer herself.
Your best bet for finding online support groups you can comfortably recommend is to ask your patients for their top choices, then spend time perusing the discussionsusing a screen name that doesn't identify you as a physician. You could also check with national organizations you trust to see what they endorse.
Just keep in mind that whether you recommend online support groups or not, your patients will use them.
There's no getting around the fact that certain patients in your practice will become as knowledgeable about their conditions as they can. They will also begin to develop clinical judgment on their own, says Ferguson. You can help them exercise this skill by making sure they have the information they need, and a framework for evaluating it.
"I think we need to help people be as competent as they can be," says Ferguson. "Our role is not to hold on to the power and control. We need to encourage patients to learn all they can about their health problems, even if that means they disagree with us from time to time. It's a poor student who is afraid to challenge the teacher."
Next month: Online patient charts.
The three most heavily trafficked consumer online health sites at the end of last year were OnHealth (www.onhealth. com), drkoop.com (www.drkoop.com), and America Online's health channel. So these are the three to visit if you don't know your own patients' preferences and want a representative sampling of what's available.
For a physician expert's top sites, we went to pathologist George D. Lundberg, former editor of JAMA and now editor-in-chief of Medscape (www.medscape.com). These are his favorites, in alphabetical order.
adam.com, at www.adam.com, is a San-Francisco-based commercial provider of health and wellness information. Among the health advisory panel members are pediatrician Alan Green, a clinical faculty member at Stanford University and creator of his own very popular "ask-the-doctor" Web site at www.DrGreene.com.
CancerNet, at cancernet.nci.nih.gov, is a service of the National Cancer Institute. This site provides information on various types of cancer, treatment options, the latest clinical trials, medical journal articles, support groups, and other resources.
Centers for Disease Control and Prevention, at www.cdc.gov. This site provides consumers with health news and features on subjects such as protecting one's health when traveling outside the US. There's also a data and statistics section that's useful to physicians.
drkoop.com, at www.drkoop.com, is a commercial site that offers a mix of news, feature articles, and links to online support communities. It has the Health on the Net Foundation "HONcode" stamp of approval.
healthfinder, at www.healthfinder.gov, is maintained by the US Department of Health and Human Services. This site provides basic self-care information, government health news, and links to numerous sites.
InteliHealth, at www.intelihealth.com, is maintained by Aetna US Healthcare and Johns Hopkins University and Health System. This site provides physician-reviewed, consumer-friendly articles, an "Ask the Doc" feature, online communities, and a medical dictionary. It has the Health On the Net Foundation "HONcode" stamp of approval.
Mayo Clinic Health Oasis, at www.mayohealth.org, is maintained by the Mayo Clinic. Like InteliHealth, this site provides physician-reviewed, consumer-friendly articles on a wide range of health topics. It also allows users to e-mail questions to clinic physicians.
Medscape and its sister site, CBSHealthWatch, at www.medscape.com, and cbshealthwatch.medscape.com, are commercial sites. Medscape is the professional site, built around practice-oriented content. CBSHealthWatch, the consumer site, provides news, features, and interactive content.
OncoLink, at www.oncolink.upenn.edu, is maintained by the University of Pennsylvania Cancer Center. This comprehensive site offers news, education on treatment options, reporting on clinical trials, psychosocial support through an active online community, and a listing of useful institutions, organizations, associations, support groups, online journals, book reviews, and other resources for cancer patients and physicians.
RealAge, at www.realage.com, is a commercial site that provides news, an active online support community, and interactive health assessment tools. RealAge has the Health On the Net Foundation "HONcode" stamp of approval.
United States National Library of Medicine, at www.nlm.nih.gov, provides access to the world's largest medical library. For general health information, instruct your patients to use this address: www.nlm.nih.gov/medlineplus. Medline plus has the Health On the Net Foundation "HONcode" stamp of approval.
A letter like the one below will help patients separate the useful Web sites from the questionable ones.
I want to work with you to help you maintain the best of health. Many people these days are taking the initiative to learn more about responsible self-care for themselves and family members. If you're doing so, I commend you and offer this handout to support your efforts.
Some books, articles, and online information services are reliable, but many are not. You need to distinguish what is helpful from what is harmful. It's important to be aware that many of the online health services were created by companies whose main goal is to make money. Don't be duped by something that serves as an advertisement, even if it doesn't look like the ads on television.
Next time you log on to your favorite health care Web site, look for the sponsor and the advertisers. Then consider whether the information is in your best interest, or whether it's designed to sell you something. If you'd like, I can point you to sites where all of the health care information is reviewed by competent medical professionals.
I suggest you use the following five criteria to evaluate the sites you visit. They were developed by George D. Lundberg, MD, former editor of The Journal of the American Medical Association, and health journalist William M. Silberg. Consider any online information unreliable unless you can answer these questions:
1. Who wrote what you're reading? The site should contain the name of a real person.
2. Where does that person work? A university? A Web business? A product manufacturer? Can you easily find that information on the site?
3. Was the information created for the site? If not, is there clear attribution showing where the information originated?
4. Who owns the site, and who pays for it? The source of money and ownership should be clearly identified.
5. Can you tell when the article itself was posted, whether it has been updated, and when?
If you can't answer these questions, you may want to look elsewhere for health information. Even if you can answer the questions easily, there's no guarantee that the information is accurate and unbiased. If you have any questions about anything you find on the Net, I'd be happy to discuss them with you.
Since so much information is available today, I may not know any more than you on any given medical subject the first time you raise it. However, I make a commitment to you to use my resources to get you responsible answers, in a timely fashion.
Happy and (responsible) surfing!
. Doctors and the Web: Help your patients surf the Net safely. Medical Economics 2000;5:186.