Making sense of it all

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.

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.

One woman contacted Health Resource because she wanted to become pregnant but her fallopian tubes were blocked. The company’s researchers found articles suggesting that surgical procedures to repair blocked fallopian tubes weren’t that effective. They also found some clinics that were doing special uterine massage techniques that had helped several women get pregnant.

Horst Sieben, of Laguna Hills, 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 USC’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 Century City, Dr. Carson Liu, who specialized in laparoscopic hernia repair.

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‘Know everything’

“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.

If necessary, Feinman hires methodologists, who have expertise in analyzing whether a study is well designed and whether the statistical conclusions are valid and reliable.

For example, a pharmaceutical company might report a 100% improvement in effectiveness of a drug versus a placebo, or dummy pill, but a closer look at the statistics reveals that only 2 patients out of 100 benefited from the drug versus one who got better from a placebo -- a finding that casts the results in a different light.

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Establishing protocols

These types of considerations are part of a broader healthcare 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.

Dr. Mitzi Krockover, a healthcare management consultant in Scottsdale, Ariz., suggests that consumers with chronic conditions ask their health insurers to put them in touch with the plan’s medical director or the “disease management specialist.”

Though cost may be a consideration, she said, “the biggest motive is good care. I’ve known of specific programs that have improved patients’ treatment plans.”

Doctor Evidence founder Feinman, 43, a board-certified internist and staff physician at Cedars-Sinai Medical Center in Los Angeles and Queen of the Valley Hospital in West Covina, said he was beginning to receive requests from physicians’ groups and health plans to research lesser-known conditions.

He started his business about 18 months ago after friends and acquaintances asked him to do research on their ailments and conditions.

“It’s all about giving informed consent to one’s own medical care as opposed to passively submitting to anything,” said Feinman. “It comes down to information that can save your life.”

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Medical research available online

Some companies that do medical information research for patients:

Doctor Evidence, Venice, www.doctorevidence.com; e-mail doctorevidence@earthlink.net; (310) 650-8657.

The Health Resource Inc., Conway, Ark., www.thehealthresource.com; e-mail moreinfo@thehealthresource.com; (800) 949-0090.

Schine On-line Services Inc., Providence, R.I., www.findcure.com; (800) 346-3287.