You’re sick. Now what? Knowledge is power

By Tara Parker-Pope

updated 10:46 a.m. ET Sept. 30, 2008

Are patients swimming in a sea of health information? Or are they drowning in it?

The rise of the Internet, along with thousands of health-oriented Web sites, medical blogs and even doctor-based television and radio programs, means that today’s patients have more opportunities than ever to take charge of their medical care. Technological advances have vastly increased doctors’ diagnostic tools and treatments, and have exponentially expanded the amount of information on just about every known disease.

The daily bombardment of news reports and drug advertising offers little guidance on how to make sense of self-proclaimed medical breakthroughs and claims of worrisome risks. And doctors, the people best equipped to guide us through these murky waters, are finding themselves with less time to spend with their patients.

But patients have more than ever to gain by decoding the latest health news and researching their own medical care.

“I don’t think people have a choice — it’s mandatory,” said Dr. Marisa Weiss, a breast oncologist in Pennsylvania who founded the Web site breastcancer.org. “The time you have with your doctor is getting progressively shorter, yet there’s so much more to talk about. You have to prepare for this important meeting.”

Whether you are trying to make sense of the latest health news or you have a diagnosis of a serious illness, the basic rules of health research are the same. From interviews with doctors and patients, here are the most important steps to take in a search for medical answers.

Determine your information personality
Information gives some people a sense of control. For others, it’s overwhelming. An acquaintance of this reporter, a New York father coping with his infant son’s heart problem, knew he would be paralyzed with indecision if his research led to too many choices. So he focused on finding the area’s best pediatric cardiologist and left the decisions to the experts.

Others, like Amy Haberland, 50, a breast cancer patient in Arlington, Mass., pore through medical journals, looking not just for answers but also for better questions to ask their doctors.

“Knowledge is power,” Ms. Haberland said. “I think knowing the reality of the risks of my cancer makes me more comfortable undergoing my treatment.”

Dr. Michael Fisch, interim chairman of general oncology for the University of Texas M. D. Anderson Cancer Center, says that before patients embark on a quest for information, they need to think about their goals and how they might react to information overload.

“Just like with medicine, you have to ask yourself what dose you can take,” he said. “For some people, more information makes them wackier, while others get more relaxed and feel more empowered.”

The goal is to find an M.D., not become one
Often patients begin a medical search hoping to discover a breakthrough medical study or a cure buried on the Internet. But even the best medical searches don’t always give you the answers. Instead, they lead you to doctors who can provide you with even more information.

“It’s probably the most important thing in your cancer care that you believe someone has your best interests at heart,” said Dr. Anna Pavlick, director of the melanoma program at the New York University Cancer Institute. “In an area where there are no right answers, you’re going to get a different opinion with every doctor you see. You’ve got to find a doctor you feel most comfortable with, the one you most trust.”

Keep statistics in perspective
Patients researching their health often come across frightening statistics. Statistics can give you a sense of overall risk, but they shouldn’t be the deciding factor in your care.

Jolanta Stettler, 39, of Denver, was told she had less than six months to live after getting a diagnosis of ocular melanoma, a rare cancer of the eye that had spread to her liver.

“I was told there is absolutely nothing they could help me with, no treatment,” said Ms. Stettler, a mother of three. “I was left on my own.”

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