1. Don't get buried
You can find what you need--if you stay focused
You'd like to check out a new drug your doctor has suggested. Or you might be wondering about surgery for back pain or how best to deal with a newly diagnosed heart problem. Do you look for help in the cluttered vastness of the Web? In back issues of newspapers or magazines? Maybe there's a new book. . . . The brain shuts down. It's all too much. You can't possibly find the information you need.
Ah, but you can. The prime directive of an info hunt, however, is to know what to look for. Most people don't, says internist Donald Vickery, coauthor of Take Care of Yourself , a guide that connects symptoms to illnesses and, through diagrams called decision trees, aids readers in deciding whether they need a medical professional.
Suppose a woman has just been told she has breast cancer. Among the questions Vickery would like her to put to the doctor: What are the qualifiers--are you sure of the diagnosis? What is known and unknown about my condition? Are the lymph nodes involved? "She needs adequate knowledge," says Vickery.
But coming up with such questions, difficult anytime, is more so under an emotional cloud. A "personal decision guide" devised by the Ottawa Health Research Institute (OHRI), which studies how people make medical choices, might help you collect your thoughts. The form is generic, applicable to almost any medical situation. It can be completed online at decisionaid.ohri.ca/decguide.html or printed out.
As you step through, the guide nudges you to consider whether you have enough information to understand your situation, to compare various options, and, in the end, to arrive at a conclusion on your own, without being pressured by others. When you're done, where you stand will be clearer. And you'll most likely have specific questions to talk over with your physician.
To fill in information gaps or educate yourself before or after an office visit, you might think about going to the hospital. Northwestern Memorial Hospital in Chicago is among a growing number of facilities that have set up health learning centers. Medical librarians are available for one-on-one sessions, and most centers are open to anyone.
And there is, of course, the Internet. Its raw power is unquestionable but often squandered. Those who are new to the Internet as an avenue to medical information seem to regard it more or less as an eighth grader does who needs to write a report on World War II: Use that as a search term, hit enter, and apres vous le deluge . Health searches unleash a similar torrent. No one could systematically wade through the more than 10 million websites and million or so news groups that come up by entering "diabetes" into Google. The natural inclination is to click on a few sites that look promising and give up. That could be why, in one survey, fewer than half the consumers who researched chronic conditions such as heart problems or depression online said they came away better understanding their condition or how to treat it.
Setting limits. At the very least, make search terms restrictive. Suppose you want to find out whether losing weight can help lower your high blood pressure. A Google search on "hypertension" spits out more than 3 million results. Adding "weight" and restricting the search to the previous year cuts them down by about three quarters. And tacking on "benefits" shrinks that number significantly. It's still in six digits, but the search is so much better targeted that several high-quality resources appear near the top.
A better option is to go directly to particular websites. Those intended for consumers can be useful--the good ones, such as the National Institutes of Health's cancer.gov and MedlinePlus (medlineplus.gov) and for-profit WebMD ( mywebmd.com ), offer the basics for most conditions. But you need to cast a skeptical eye on any consumer site. If a site has an "about us" tab or link, click on it to see who the sponsors are, and ask yourself whether they might have an agenda other than full and accurate information. Many consumer sites are less than current--check for recent studies from major medical journals. And many don't list their sources of information, which creates uncertainty.
"The greatest sin of consumer sites," says Donald Vickery, "is that they take the attitude, 'I'm just an old-fashioned doctor, and I'm not going to allow you to know what the risks are.' " Maryann Napoli, associate director of the Center for Medical Consumers, a New York-based advocacy group, believes that consumer sites are watered down. "They sin by omission," she says.
Consider "watchful waiting." This is an option, involving close monitoring rather than treatment, that is advocated by urologists for some older men whose prostate cancer is localized and slow-growing. The option doesn't exist at NetWellness ( netwellness.org ), a consumer site sponsored by three Ohio universities. MedlinePlus has a thoughtful discussion of watchful waiting, but it's not easy to find.
Napoli and Vickery advise going to professional sites instead. At eMedicine.com, a website written by and aimed at physicians, a search brings up a thorough, lucid discussion of watchful waiting that includes a summary of studies of men who chose that option.
Slogging through the technical language in professional sites can be rough, Napoli readily concedes, but "you can get the gist" --enough to ask a doctor knowledgeable questions. You can always refer to an online medical dictionary like the one at www.medicinenet.com . Vickery's secret: Don't look for individual studies; "look for review articles and summaries." One of the best compilations of reviews and summaries can be found at the Cochrane Collaboration (www.cochrane.org), a cooperative of medical experts. Full reports are available only to subscribers, but anyone can access the abstracts, which include the reviewers' conclusions and source material. OHRI has begun to convert Cochrane reports into "decision aids" --condition-specific versions of its generic decision guide. They're on OHRI's website.
Once you've figured out which questions to ask a doctor, of course you need to find a good doctor to ask. To track down first-rate medical centers and doctors for serious illnesses, the annual U.S. News "America's Best Hospitals" rankings are a start ( www.usnews.com ).
Try to find volume data. Up to a point, the more often hospitals and doctors perform a given procedure, the lower the risk to the patient--and many providers, unfortunately, don't do enough. In New York State during 2002, almost 20 percent of hospitals that inserted heart stents did six or fewer of them, and more than 40 percent of physicians who inserted a stent did it one time. "Hospitals are not doing a very good job with their credentialing process," says Arthur Levin, director of the Center for Medical Consumers. A few other states, such as California, Maryland, and Pennsylvania, make similar data available on the Web. Otherwise, you'll have to ask. And if a hospital or doctor won't tell you? Say thanks, and look elsewhere.
This story appears in the November 8, 2004 print edition of U.S. News & World Report.