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How to get what you need

June 23, 2008|Susan Brink | Times Staff Writer

Even if you're not rich or well-connected, you can find leading-edge treatment when it matters. And it could well matter if your condition is rare or if few doctors have developed expertise in treating it. For starters, be Internet savvy -- and pushy. Here are some tips for getting what you need:

Be open to the hospital your insurance plan recommends.

Insurers want to keep costs down, and one way to do that is to minimize costly complications. So they try to contract with institutions that have the most experience and the best outcomes. Even HMOs contract with outside centers of excellence for some rare disorders when their own physicians lack unique expertise.

"This whole notion of centers of excellence used to be based on gestalt and individual recommendations," says Dr. William Roper, dean of the medical school and chief executive of the healthcare system at the University of North Carolina.

"It's becoming much more data-driven and evidence-based."

To determine the "best," arm yourself with numbers.

If the doctor, or hospital, you want has more experience than the one your insurer has chosen, show your insurer the numbers. A surgeon who has done a procedure a few hundred times will have better results than one who has done it two or three times. "There's a growing body of evidence that says that volume matters," Roper says.

The only way to find out is to ask, so don't be shy about asking physicians how many times they've done the procedure, or treated the condition.

And be specific. A cardiac surgeon who has done hundreds of heart bypasses is not necessarily an expert in valve replacements.

Get recommendations.

The less common the disorder, the fewer the institutions that will have deep experience with it. But it's just those institutions you want to find. Each time you talk to a provider, don't end the conversation without asking who else has experience with your condition or which institutions are known for treating the disease. Keep following the chain of recommendations to see if one or two names are consistently repeated.

Do your homework.

Track down statistics and studies as tailor-made to your condition as possible.

Search for articles at the National Institutes of Health's free archive of medical journals ( You can often see the entire study for free, sometimes only the abstract, but poring over the list will give you an idea of which institutions are actively publishing articles. Be as specific as possible in your search. For example, don't type in "brain cancer." Use "malignant glioma," "brain tumor" and "left parietal lobe."

Find out who is doing research into your condition.

If a physician publishes a lot about your condition, there's a good chance he or she is already onto potentially better techniques, even if results haven't yet been published. "What is published is always years behind what is happening at major academic centers," says Dr. Henry Friedman, deputy director of the Preston Robert Tisch Brain Tumor Center at Duke University Medical Center in North Carolina.

Even if you don't want, or qualify for, a clinical trial, find out which institutions are researching your condition. Go to for a list of more than 50,000 federally and privately sponsored trials.

Make appointments.

When you find a doctor or hospital doing research into your disease, call the physician or the institution. Large academic centers all have physician referral departments set up to connect patients with the appropriate physician. Your insurance company will cover a second opinion, and going to a large center for that second opinion can be the entryway to excellence.

Whatever your disease, go online.

Look for Internet-based support and advocacy groups. For example, the National Multiple Sclerosis Society’s website has a page on recent research into the disease, who is doing it and where.

Check out the disease advocacy group's chat rooms. Patients who have gone through what you're facing have a lot of first-hand advice about what they've done, where they've gone and how it turned out. In the absence of good national quality and outcomes measures of doctors and hospitals, the personal experience of your peers is invaluable.

But beware of websites trying to sell something or promoting a treatment not available in any academic center. Leading-edge research is usually backed by the NIH and carried out by academic centers. Private organizations may be pushing their own product or technique. "Any Internet site that sounds too good to be true usually is," says Dr. Robert Adler, vice chairman of pediatric medicine at Childrens Hospital Los Angeles.

Try to change Medicare plans if necessary.

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