In 2011, I was diagnosed with stage four gallbladder cancer, a rare condition that’s almost always fatal within months. The reason I’m still alive is that as an experienced researcher, I was able to find experts who provided innovative care. So, from one patient to others, here are some suggestions on how to do it.
Find A List, Then Consider How It Was Compiled
If you type keywords, such as your diagnosis or symptoms, into a search engine like Google or Bing into find a specialist, the websites that turn up are likely to provide similar information about each doctor’s education, years in practice, and board certification. They might, however, differ in how they select doctors for inclusion.
The most comprehensive list is maintained by the American Medical Association, which says that its Doctor Finder database includes “virtually every licensed physician in the United States.” With more than 814,000 listings, it’s searchable by geography and specialty… but you might find yourself drowning in options.
Insurance company websites, by contrast, are likely to list only in-network doctors, as medical center websites list only doctors who practice at that facility. Similarly, Medicare’s Physician Compare, which offers unusually detailed information about each doctor, includes only those who accept Medicare. If you need a specialist within a particular network or geographical area, you could start with these websites to identify the most promising possibilities, and then use other tips in this list to decide which of them is best for you.
Still other websites list only doctors who pay to be included. An example is ZocDoc, which matches patients with doctors who have immediate openings.
Look, you want the best specialist you can find. The trick is how you find that person.
To find doctors selected for their accomplishments, a long-standing option is Castle Connolly’s Top Doctors list of physicians nominated by other physicians and then vetted by a review team. Although individual physicians cannot pay to be included, medical institutions can pay to allow free public access to detailed information about Top Doctors at those institutions. By contrast, only the names of other Top Doctors are available unless you pay for access to additional information. Alternatively, you can use other tips suggested here to learn more about a Top Doctor once you have the name.
You want the best specialist you can find. The trick is how to find that person.
Among newer, free-of-charge websites that use evaluative criteria is Amino, whose research includes such factors as insurance claims, medical billing records, how likely doctors are to perform certain procedures, and how many patients they see with a particular condition. Since doctor-finder websites are many and varied, it’s worth searching for something like “physician-patient matching” for a list of available websites.
Always Check The Source
There’s a lot of noise out there when it comes to finding a medical specialist. There’s also a lot of sites that are just trying to scam you. Make sure when you’re searching for a specialist, you know that the source recommending them to you is who they claim to be.
There’s a lot of sites that are just trying to scam you.
In addition to clicking the “About” tab on each website to learn how it selects doctors, you might also look at the URL. For instance, even if a website’s title includes words like “national,” “federal,” or “government,” it’s not a government source unless the URL ends in .gov.
And before relying on any website not associated with a well-respected medical center or a legitimate organization like the American Cancer Society, it’s a good idea to look for reviews of the website itself. If there are no reviews, it is, at best, not a well-substantiated source.
Don’t take Patient Ratings at Face Value
Patient ratings of physicians are widely available on websites such as Healthgrades, Vitals.com, U.S. News Doctor Finder, Angie’s List, and RateMDs.com. Still, tempting as it may be to use consumer satisfaction to choose physicians as we do toasters or cellphones, those grades can be misleading.
Consider, for instance, a search I just did on Angie’s List for internal medicine physicians in my area. Several doctors have a grade of A, indicating their average score. Then comes someone with a B, and many patients might stop there and choose one of the A’s. But of that doctor’s eighteen reviews, seventeen are A’s, with glowing descriptions of her thoroughness and caring attitude. A single F dropped her average to a B; the reason given is that the staff didn’t answer email quickly enough.
Try to look at the big picture, not just the rating.
Of course, if patients consistently made the same serious complaint, that would be cause for concern. But as a Consumer Reports summary of a study in the Journal of the American Medical Association points out, most doctors don’t get enough reviews to provide a reliable guide. Moreover, as WebMD observes, the objectivity of ratings websites may be open to question if they accept advertising from doctors or offer paid profiles.
The lesson? Try to look at the big picture, not just the rating.
Hospital Quality Matters
Some institutions are more competitive than others, and their teams have more experience with rare conditions and procedures. Websites like Consumer Reports, Medicare’s Hospital Compare, and U.S. News Best Hospital listings can help you identify top institutions, as well as providing data on such measures as safety ratings, surgical complications, and hospital-acquired infections. These ratings aren’t as useful as they might be, since not all hospitals report all, or any, of the requested information. Still, they’re a place to start.
There’s Always Pay-To-Play
If you prefer, you can have a professional service select a specialist for you. I’ll use Grand Rounds as an example, since it’s included in the health care plans of several large employers, such as Comcast, Wal-Mart, and Costco, and is also available to the public.
Grand Rounds will connect you with a specific doctor based on such things as where they trained and where they practice, how often they’ve performed certain tests and procedures, and patient outcomes. Unless covered by your employer, the service costs $599. Grand Rounds will also commission an online second opinion by a prominent expert for $700 to $7500.
Wrapping Up: How Do You Know When to Stop?
You’ve probably heard about patients who suffered for years before finding the right diagnosis or treatment. For them, persistence paid off. But you’ve probably also heard accounts of patients, or their loved ones, prolonging terrible pain and expense by refusing to accept the limits of medical knowledge, or the futility of prolonging life in a body that’s no longer viable.
When I faced that question in 2011, I consulted eight doctors before finding the surgeon who saved my life. For me, the search was justified because I was healthy enough to live for years if the cancer could be eliminated, and because my diagnosis was so rare that much of what doctors said was based on assumptions rather than data. Under those conditions, I kept searching for a top-tier expert who’d consider my specific case with an open mind.
Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same…
I’d like to think that if I’m ever in a situation where medical intervention is useless, I’ll have the sense to choose comfort care — but no one can be sure of that. With life itself on the line, those decisions come as much from the gut as from the brain, and no formula can provide a flawless answer.
So, along with the practical suggestions offered here, I add some advice from Dr. Atul Gawande in Being Mortal.
“Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?”