If you have a chronic health problem, you know just how much of a slog it can be to get an accurate—and timely—diagnosis. Maybe you get referred to a specialist, but then you need a second opinion, and a third, with tests after procedures after tests…it can drag on forever. And when you’re in pain and your health is at stake, any amount of time is too long to wait.
Thankfully, scientists at Johns Hopkins University recognize how big a problem misdiagnosis really is. A team of researchers in the school’s Armstrong Institute for Patient Safety and Quality have now identified three major disease categories that account for almost three-fourths of dangerous diagnostic errors. In fact, errors that led to death or serious, permanent disability were associated with a significant number of these categories, dubbed “the big three”: misdiagnosed cancers (37.8%), vascular events, like stroke and heart attack (22.8%), and infections (13.5%).
Here are the most common conditions involved in each category:
- Cancers: Lung, breast, colorectal, prostate, and skin cancers
- Vascular events: Stroke, heart attack, venous thromboembolism (blood clots in the legs and lungs), aortic aneurysm and rupture (dissection), arterial thromboembolism (a blockage of the blood supply to internal organs)
- Infections: Sepsis, meningitis, encephalitis, spinal infection, pneumonia, and endocarditis (a heart infection)
The research, published in the journal Diagnosis, assessed all 11,592 diagnostic error cases between 2006 and 2015 from a database of U.S. malpractice claims. They confirmed that errors in diagnosis are the most common, most catastrophic, and most expensive mistakes made in the medical field. In fact, more than 100,000 Americans are estimated to die or become permanently disabled per year due to delayed, inaccurate, or missed diagnoses.
"We know that diagnostic errors happen across all areas of medicine. There are over 10,000 diseases, each of which can manifest with a variety of symptoms, so it can be daunting to think about how to even begin tackling diagnostic problems," says lead researcher David Newman-Toker, M.D., Ph.D., director of the Johns Hopkins Armstrong Institute Center for Diagnostic Excellence. "Our findings suggest that the most serious harms can be attributed to a surprisingly small number of conditions. It still won't be an easy or quick fix, but that gives us both a place to start and real hope that the problem is fixable."
How to Advocate for Your Health
When it comes to addressing the huge issue of misdiagnosis, much of the burden falls on doctors and other health care providers. But that doesn’t mean there aren’t steps you can take to fight for your health care and improve your chances of getting a quick and accurate diagnosis.
In fact, the researchers suggested that increased patient engagement was a major way to avoid diagnostic errors. So, as the patient, what can you do? Here are some self-advocacy goals you may want to adopt whenever you’re dealing with a medical problem:
- Do your research. A big part of advocating for yourself is doing your research. Head online to find reliable websites (like HealthCentral!) that talk about conditions that share your symptoms. Know the latest diagnostic methods and treatments. And don’t be afraid to print out information and bring it with you to your doctor.
- Trust yourself and persevere. While you ideally should be able to trust your doctor no matter what, sometimes, patients do know best when it comes to our own bodies. We’re the ones living in them, after all! Too often, chronic illness patients are told things are “all in their heads.” But if something feels wrong, don’t back down until you find solutions.
- Come prepared. Ever walked into your doctor’s office and immediately forgot that huge list of things you swore you were going to ask about? That’s why it’s helpful to keep a list or even a symptom diary to bring with you as a physical record (either in your phone or on paper) that you can’t forget. Start the exam with, “I have a list of things I wanted to discuss with you,” and don’t let your doc leave the room until you get your answers.
- Get that second (or third) opinion. Not clicking with your doctor? Maybe you find they dismiss your concerns (see: “It’s all in your head”) or don’t seem to be aware of the latest treatments. Don’t be afraid to call up your insurance company or ask around for a referral to a different doctor—they may be able to serve you better.
But what about emergency situations, like heart attack or sudden infection? In those cases, you don’t exactly have the time to get a second opinion—you need care now, or your life is at risk. In those cases, education is still the key. For example, do you know all of the common signs for heart attack in men and women? You may be surprised to learn it’s not always just straightforward chest pain. Read up on the symptoms and early warning signs so you’re prepared should you and your loved one experience them.
Here are some other helpful resources on some of the more common conditions found to be misdiagnosed in the study:
See more helpful articles:
A Beginner's Guide to RA: How to Be a Self-Advocate
How to Advocate for Your Sexual Health at the Doctor's Office
A Faster Way to Spot a Stroke