by Diana Zuckerman, president of the National Center for Health Research
My friend Barry just got out of the hospital, four months after having an almost deadly reaction to a prescription medication. Talking to him about his experience has made me realize how overwhelming it is for most people to figure out what medical treatments are best for them, which doctors to trust, and how to recover from a serious illness.
Thousands of people contact our organization with medical questions, and most of them--no matter how smart they are--contact us because they don't know how to get the medical information they need to stay well or to recover from illness. Going online can be very helpful, very confusing, or even dangerous.
Here are some simple tips to help:
My friend Barry needs an outstanding physician to help him recover from a rare, life-threatening disease that was impossible to prevent. But had Barry sought the best medical attention immediately after experiencing serious symptoms rather than toughing it out at home, he probably could have avoided the hell he's been through. He asks me to tell you not to wait the way he did.
Be thoughtful about treatment decisions.
Be cautious about taking treatment advice from friends or relatives who've had your illness, or know someone who's had it. There's no guarantee that they got the best treatment. And medical advice can change weekly; they may have had a different form of the illness than you do; or they may have other health problems that influenced their treatment options but wouldn't be relevant to you.
Avoid the Food and Drug Administration's (FDA's) "breakthrough drugs." This designation sounds as if the drug is the best new treatment, but that's not what it means. Weirdly, FDA's designation refers to new drugs that seem potentially promising but are not yet proven to be safe or effective. A more accurate term would be "new but unproven" drugs. It often takes 10 years or more to know exactly what the risks and benefits of a new drug are. "Breakthrough drugs" are also usually extremely expensive, despite the weak evidence. Who would want a new, unproven drug if proven alternative treatments are available?
If you start having symptoms within days or weeks of taking a new medication, find out if they might be related to your medication. Go online and search the name of the medication and the word "risks" or the term "side effects." Find the website for the company that makes the drug or go to drugs.com. Although the company will praise its medication, by law it must list all the possible risks or side effects found in research studies. That's why a company's site (or drugs.com, which lists the same risks and side effects) is more informative than many other websites.
Research doctors and medical facilities.
I live in Washington, DC, but suddenly, the local hospital has become a Johns Hopkins facility (even though the real Hopkins is in Baltimore), and there is a Cleveland Clinic medical center nearby (but Cleveland is more than 300 miles away). Mayo Clinics are all over the place too. Don't be fooled by those famous brand names. The actual Johns Hopkins, Cleveland Clinic, and Mayo Clinic attract some of the best doctors for many reasons. But your local medical center usually won't have the same ability to attract the best, even when it's bought an affiliation with a famous name.
If you need surgery, find a board-certified surgeon who does many of those same surgeries every year. Practice really does make perfect, relatively speaking. Of course, also look to see where and when they were trained, and look online for additional information about a surgeon. If you have a choice, choose someone old enough to be experienced but still young enough to be at the top of his or her game.
Don't choose a doctor who doesn't ask you lots of questions about your health history and symptoms or doesn't listen to what you say. On the other hand, don't expect a doctor to always agree with you. For example, too many doctors prescribe antibiotics for colds or the flu just because patients demand them. But antibiotics don't work for colds or flus, and they can have side effects that are harmful. You want a doctor who knows more than you do but listens carefully. And if the doctor tells you that you don't need medication, take that as a good sign.
Stick to reputable websites.
When looking for medical information online, I recommend going to the main website of the National Institutes of Health at nih.gov, click "health information" and then write the name of the disease you want to learn about in the search box. For cancer information, we recommend cancer.gov. The ".gov" tells you that the website information is based on research.
Avoid the websites that are selling something--whether it's a hospital, a drug company, or nonprofit disease support organization (because some are so much better than others, and many depend on pharmaceutical companies for their funding). This can be tricky though, because many sites are selling something, though it isn't always obvious.
- Avoid websites with "sponsored links," which is just another term for ads.
- Avoid websites with "popular responses," such as Yahoo Answers. Medical advice from nonprofessionals can be helpful or harmful. The bottom line is there are better sources of information than advice from strangers who may or may not know what they are talking about.
- The first websites to come up in Google, Yahoo, or other search engines are probably not the best. Most include sponsored links at the top and the side--and those are paid ads. Even if they're not sponsored links, top websites on these search engines often pay for placement.
- Wikipedia is a mixed blessing because anyone can edit it--a Nobel laureate or the preteen next door. Some medical information on Wikipedia is great; some is awful. Don't play Russian roulette with your health.
- Often, websites that seem to be created by patients or caring doctors aren't. Some advertise products that are unsafe or ineffective, and others will delete comments of patients expressing concerns about medical products. The physicians featured on the site often pay for the privilege--it's a form of advertising, and I'm willing to bet that the best physicians in the country are not the ones paying to be included.
Diana Zuckerman is the president of the National Center for Health Research (formerly National Research Center for Women & Families.) After serving on the faculty of Vassar and Yale and as a researcher at Harvard, she spent a dozen years as a health-policy expert in the U.S. Congress and a senior policy adviser in the Clinton White House. She is the author of five books, several book chapters, and dozens of articles in medical and academic journals, as well as in newspapers across the country.
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