Making Sense Of It All Monday February 16th 2004
By Valerie Reitman
Kennedy turned to a Venice company called Doctor Evidence to find out. Started by Dr. Todd Feinman, the medical-information company 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 companies, 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 companies 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.
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 Web sites, 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 on the west side of Los Angeles. "There was a lot of information out there, but because it isn't regulated, some of it was extreme."
Medical search services typically charge $200 and more 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.
At least two of the search companies were started by people who faced life-threatening conditions themselves.
> Gary Schine, of Providence, R.I., started FindCure in 1993, three years after being told he would die from a rare form of leukemia because there was no cure. He did some research and turned up a clinical trial in San Diego, which he participated in; he has been in remission since completing the experimental treatment.
Twenty years ago, Jan Guthrie, then a college administrator in Little Rock, Ark., was found to have a rare form of ovarian cancer during surgery to repair a ruptured ovary; doctors removed the cancerous tumor. While doing research in a medical library she came across studies that found that women treated with radiation for her form of cancer fared much worse a few years after treatment than those who hadn't received such treatment.
When her cancer returned two years later, a medical specialist in Houston suggested chemotherapy. But her research had turned up two cases in which patients had responded well to surgery alone. When she suggested that option to the specialist, he said, "We could do that."
"I thought, 'You're the specialist, why am I telling you this?' " Guthrie recalls.
> Realizing there was a niche for this type of medical research, she started the Health Resource Inc. in the kitchen of her Conway, Ark., home. The small company, founded in 1984, has done about 10,000 reviews, charging $395 for each individually tailored cancer report and $295 for those that are not cancer-related.
"It's so important to learn what you have and make sure that the treatment being recommended is the one that offers the best chance of recovery," she said.
> Horst Sieben, of Laguna Hills, Calif., turned to Health Resource after being diagnosed with bladder cancer a year ago. In four days, the financial consultant received a report he likened to a professional corporate analysis: neat, logically formatted, with tabbed sections, an executive summary and significant points highlighted with yellow marker. It included descriptions of the disease and its stages, dozens of articles from medical journals and the types of treatment available. The company's reports include information on conventional treatment, experimental therapies and even alternative and holistic approaches.
As a result of the report, Sieben underwent surgery at the University of Southern California's Norris Comprehensive Cancer Center that involved replacing his bladder with pouches made from pig intestines. The surgery went well, but he would require additional surgery for a hernia and other complications. With the help of Health Resource, he found a doctor in Los Angeles, Dr. Carson Liu, who specialized in laparoscopic hernia repair.
> "I feel everyone who is facing some kind of situation like me should get all the data they can, that is intelligently organized, so they can know everything about their condition," Sieben said.
Services such as Health Resource don't make recommendations on what course of action a patient should take.
> But they do present clear outlines of what is available and give lots of material to help get a patient up to speed quickly on the latest remedies available.
Doctor Evidence takes it a step further and actually evaluates the studies and clinical trials that have been done to determine whether they are well designed and meet high standards of scientific validity and relevance to the patient's case.
> These types of considerations are part of a broader health care trend known as evidence-based medicine. Many insurers and health plans, as well as the U.S. government, are trying to establish clear protocols for treating various conditions based on evidence gathered from studies, clinical trials and proven outcomes.
Doctor Evidence LLC, e-mail: firstname.lastname@example.org; 310.450.6519.