You’re Sick. Now What? Knowledge Is Power.

By TARA PARKER-POPE
01 oct 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.”
Ms. Stettler and her husband, a truck driver, began searching the Internet. She found Dr. Charles Nutting, an interventional radiologist at Swedish Medical Center in Englewood, Colo., who was just beginning to study a treatment that involves injecting tiny beads that emit small amounts of radiation. That appeared to help for about 18 months.
When her disease progressed again, Ms. Stettler searched for clinical trials of treatments for advanced ocular melanoma, and found a National Institutes of Health study of “isolated hepatic perfusion,” which delivers concentrated chemotherapy to patients with liver metastases. After the first treatment, Ms. Stettler’s tumors had shrunk by half.
“I don’t like statistics,” she said. “If this study stops working for me, I’ll go find another study. Each type of treatment I have is stretching out my life. It gives me more time, and it gives more time to the people who are working really hard to come up with a treatment for this cancer.”
Don’t limit yourself to the Web.
There’s more to decoding your health than the Web. Along with your doctor, your family, other patients and support groups can be resources. So can the library. When she found out she had Type 2 diabetes in 2006, Barbara Johnson, 53, of Chanhassen, Minn., spent time on the Internet, but also took nutrition classes and read books to study up on the disease.
“I was blindsided — I didn’t know anybody who had it,” said Ms. Johnson, who told her story on the American Heart Association’s Web site, IKnowDiabetes.org. “But this is a disease you have to manage yourself.”
Tell your doctor about your research.
Often patients begin a health search because their own doctors don’t seem to have the right answers. All her life, Lynne Kaiser, 44, of Plano, Tex., suffered from leg pain and poor sleep; her gynecologist told her she had “extreme PMS.” But by searching the medical literature for “adult growing pains,” she learned about restless legs syndrome and a doctor who had studied it.
“I had gone to the doctors too many times and gotten no help and no results,” said Ms. Kaiser, who is now a volunteer patient advocate for the Web site WhatIsRLS.org. The new doctor she found “really pushed me to educate myself further and pushed me to look for support.”
Although some doctors may discourage patients from doing their own research, many say they want to be included in the process.
Dr. Fisch of M. D. Anderson recalls a patient with advanced pancreatic cancer who decided against conventional chemotherapy, opting for clinical trials and alternative treatments. But instead of sending her away, Dr. Fisch said he kept her in the “loop of care.” He even had his colleagues use a mass spectroscopy machine to evaluate a blue scorpion venom treatment the patient had stumbled on. It turned out to be just blue water.
“We monitored no therapy like we would anything else, by watching her and staying open to her choices,” Dr. Fisch said. “She lived about a year from the time of diagnosis, and she had a high quality of life.”
Dr. Shalom Kalnicki, chairman of Radiation Oncology at the Montefiore-Einstein Cancer Center, says he tries to guide his patients, explaining the importance of peer-reviewed information to help them filter out less reliable advice. He also encourages them to call or e-mail him with questions as they “study their own case.”
“We need to help them sort through it, not discourage the use of information,” he said. “We have to acknowledge that patients do this research. It’s important that instead of fighting against it, that we join them and become their coaches in the process.”