Nine months ago a young man, Zvi Frankel, e-mailed customer service at Consumer Reports Health. He was concerned about his grandfather, who had aortic stenosis, a serious narrowing of the valve controlling blood flow between the heart and the body’s major vessel, the aorta. He didn’t want medical advice, just some tips on how he could find the best heart surgeon and heart hospital for his grandfather, and how he could learn more about a new device—a transcatheter aortic valve—that one physician had recommended.
I quickly realized that, though we publish some heart surgery Ratings and though I serve on a committee that focuses on that device, I could not easily provide the information he needed. Worse, I realized that no one could. But Zvi is a persistent young man, it turns out, and together we embarked on a quest for medical information, one that culminated this week with Zvi’s story being published in JAMA Internal Medicine.
I started by suggesting that he check the website for the Society of Thoracic Surgeons, where many heart surgery groups and hospitals report their outcomes for aortic valve surgery. (We publish data for heart bypass surgery from STS on our website.) I told him that the STS data for the Cleveland Clinic showed superb performance for aortic valve surgery. But he wanted to compare the Cleveland Clinic to the renowned Mayo Clinic, in Rochester, Minn., and to hospitals in New York City, where his grandfather lived. No such luck: While New York does have hospital-specific information on its website, it differs from what STS has, making comparisons difficult. And Zvi couldn't find appropriate data from the Mayo Clinic.
He also wanted information about specific heart surgeons, not just hospitals. But that information is even harder to come by: Only a few states (New York among them, luckily for Zvi’s grandfather) collect and make public information about specific heart surgeons.
Perhaps most frustrating was getting information about the new transcatheter aortic valve. The device is inserted through an incision in the groin and threaded up through an artery to the heart, an approach that allows patients to avoid the pain and short-term disability of open-heart surgery. But it turns out that there was very little information about how successful specific hospitals and surgeons were with this device, even though one New York City hospital frequently advertises its success with the procedure. Nor was it easy to compare how the new device compares with the standard one, in terms of long-term safety and efficacy.
Eventually Zvi presented everything he knew to his grandfather, who chose the traditional approach, with a surgeon who had a good track record in New York.
After the surgery—which, I was relieved to learn, went well—I suggested to Zvi that he write his story and send it to JAMA Internal Medicine. The editor agreed to publish it. The editor also asked Michael Mack, M.D., a Dallas heart surgeon and STS member who serves on the same committee I do, to write a commentary. His conclusion: That patients and their families have the right and the ability to ask for information from surgeons and hospitals about their success and failure rates with specific medical devices and procedures. “If patients don’t get that, they should go elsewhere until they do,” Mack wrote.
I agree. And so does Zvi—and his grandfather.
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