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Making sense of it all

Patients turn to research services to sort out information about their treatment options.

February 16, 2004|Valerie Reitman | Times Staff Writer

An artery in Dr. David Ellis' heart had clogged. His cardiologists had recommended insertion of a stent -- a tiny tube threaded through the clog to clear a pathway, like a tunnel through a mountain -- rather than more invasive open-heart surgery.

But Ellis' daughter, Whitney Kennedy of Venice, wanted to make sure her father was getting the best advice, suspecting that his doctors in Canada's government-run health system might be recommending the stent simply because it was a less expensive alternative.

Kennedy turned to a Venice company called Doctor Evidence to find out. Started by Dr. Todd Feinman, the medical-information firm researched her father's medical condition and prepared a report that compared the survival rates for stent-insertion procedures with those for open-heart surgery. The report included data detailing the medical outcomes for procedures in patients matching Ellis' profile -- diabetic, in their 60s, with one clogged artery. It also evaluated the performances of the two dozen types of stents that surgeons might use for the procedure, down to which brand of stent had shown the best results. The report even included questions that Ellis, an ear, nose and throat surgeon, should ask his cardiologist.

The result: The report confirmed Ellis' doctors' recommendations that a stent procedure was the best option, provided the stent was the proper size and material and that the surgery was performed by a specialist with a lot of experience in such procedures. Ellis and his daughter found the report reassuring.

Kennedy and Ellis are among a growing number of consumers turning to independent research firms, such as Doctor Evidence, to review the treatment recommendations of their doctors on medical issues ranging from the mundane to the potentially life-threatening. Like Ellis, many consumers are looking not only to educate themselves about their conditions but also for reassurance -- an independent, unbiased opinion to make sure their health insurer or physician is considering all options or acting in the patient's best interest. Consumers also are turning to programs or firms that help them find the best surgeons, hospitals or clinical research trials.

(In Ellis' case, his cardiologists didn't have the correct size of stent that Doctor Evidence had specified and used another type; the artery clogged again a few months later and he required open-heart surgery.)

The companies say their research reports are prepared by people skilled in medical-information research. Doctor Evidence also hires methodologists to evaluate the quality of the studies that are reviewed.

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Doctor welcomes the help

Even some physicians refer patients to these services when they don't have time to do the research themselves.

"If I were in medical school and had a day to kill in the library, I probably could end up with something similar" to such services' findings, said Alan Rosenbach, a Los Angeles dermatologist who suggested that a patient with excessive sweating of the palms, a condition known as hyperhidrosis, contact Doctor Evidence to evaluate alternative treatments. "But physicians can't take a break in the day to do five or six hours of homework for each patient."

The instant accessibility of medical information over the Internet has only heightened demand for such services. A person can type a term such as "multiple sclerosis" into an Internet search engine and view hundreds or thousands of websites, from government agencies, medical schools, patient advocacy groups and individuals with a personal story to tell or a product to sell. And there is a plethora of books about virtually any ailment.

Sorting through it all can be overwhelming. There is no single consumer organization that pulls information together, comparing drug effectiveness, treatment options and quality of medical care for a patient's specific condition. It can be difficult to separate fact from fiction, and truth from advertising.

When her then 4-year-old daughter was diagnosed with celiac disease, an allergy to gluten products, Michelle Ben-Yehuda went on the Internet, but the information she found only confused her. So she ordered a research report from Doctor Evidence. She felt relieved to find that her daughter's doctor had been doing all the recommended tests and making the right suggestions. "My experience on the Internet was a bit scary," said Ben-Yehuda, who lives in Westwood. "There was a lot of information out there, but because it isn't regulated, some of it was extreme."

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Charges start at $200

Medical search services typically charge $200 and up for a report -- not inexpensive, but a price that many consider a good investment when their health is at stake. The cost of unnecessary medical tests or services could easily cost many times that amount. Some consumers believe they also can save money by finding the best doctors and treatments earlier in the process.

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