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Misdiagnosis is an under-discussed issue that touches all aspects of healthcare and kills more than 40,000 people annually. Getty Images
  • In the United States, 12 million people are affected by medical diagnostic errors each year.
  • An estimated 40,000 to 80,000 people die annually from complications from these misdiagnoses.
  • Women and minorities are 20 to 30 percent more likely to be misdiagnosed.

Darlene Anita Scott, 45, has been a physically active, healthy person her entire life.

So, it was a surprise when the distance runner started experiencing fatigue and shortness of breath while training for her seventh marathon back in 2016.

“I noticed I was out of breath after just the first mile while I was training, but it wasn’t something I was associating with anything wrong,” Scott told Healthline.

“I had a pretty active professional life. I’m a professor who was just promoted to an administrative position, I was keeping an active research schedule, I was traveling. I’m also an artist. So, I was keeping a very active calendar… I have a busy life, I thought fatigue was coming from the busy part,” she explained.

Scott, who works as an associate professor of composition and creative writing at Virginia Union University in Richmond, Virginia, just assumed that her hectic lifestyle was contributing to the fatigue. It wasn’t anything too serious.

That sense was compounded by the diagnosis from her primary care physician, who said she must have asthma or allergies.

He gave her an inhaler prescription. With that, she assumed she had a clear answer for what was wrong.

She was told that since she was a transplant to a new place, like many people who move from one part of the country to another, she was more susceptible to developing allergies and having allergy-induced asthma.

To Scott, it was a diagnosis that didn’t cause much concern.

“Whatever it was, it was ‘something small,’ I thought. I thought it was something to treat ‘today’ and get back to life. I ramped up training, added new workouts, and since it was the summer and I didn’t have to be in the classroom, I had reduced workload and was able to sleep more,” she said.

That was the summer, but Scott’s fatigue and trouble breathing failed to quiet down.

After an initial pulmonology test seemed to show her lungs to be in good shape, additional testing and a chest X-ray showed something else.

A cardiologist eventually diagnosed her with heart failure. She had an enlarged heart, or cardiomyopathy.

Within the next year, she was given a pacemaker and also diagnosed with sarcoidosis, an inflammatory disease also associated with heart failure.

For Scott, learning she didn’t have asthma or allergies, but a much more serious diagnosis, was jarring, life-altering even.

“First, I was like, ‘Let’s fix this.’ I believed myself to be healthy, and I felt like I can heal myself fairly quickly,” she recalled.

“Then, I was a little bit angry, because of my lifestyle — if you’ve been doing things that are supposed to keep one healthy, you think, ‘Why is this happening?’ There’s shock and anger and a little bit of denial.”

Scott’s story of originally receiving a misdiagnosis isn’t that unusual.

In fact, about 12 million people are affected by medical diagnostic errors in the United States each year, according to a 2014 report from the journal BMJ Quality & Safety.

The researchers estimate that about half of those errors could be “potentially harmful.”

The Society to Improve Diagnosis in Medicine (SIDM) reports an estimated 40,000 to 80,000 people die annually from complications from these misdiagnoses.

It’s an under-discussed issue that touches all aspects of the healthcare field — from physicians and healthcare systems themselves to, most crucially, the patients whose lives might be on the line as a result of an inaccurate initial diagnosis.

It’s also a complex issue to address. This isn’t like finding a new treatment for a single disease. It’s about addressing systemic problems embedded in healthcare.

Tackling how to make diagnostic error less common means tackling everything from human mistakes to traditional but flawed procedures for treating and diagnosing conditions.

It also includes finding ways for medical providers to adapt to the technology shifts and innovations that seem to be constantly changing healthcare.

The SIDM is using a multipronged approach to address this issue.

Founded in 2011, SIDM has been on the front line of ensuring diagnostic errors are less common.

In 2014, it launched Diagnosis, the organization’s official peer-reviewed journal highlighting research and articles that spotlight approaches to dealing with medical diagnostic error.

The following year, the SIDM petitioned the National Academy of Medicine (NAM) to oversee a review of diagnostic error, leading to the report Improving Diagnosis in Health Care, which is something of the gold standard in the field.

The report highlighted key goals for the medical community. These include:

  • Fostering teamwork in the diagnostic process between patients, families, and providers.
  • Improving medical education when it comes to making diagnoses.
  • Making sure health information technology is applied effectively.
  • Ensuring that physicians and medical providers identify and learn from diagnostic errors.
  • Creating a medical culture that fosters improvements in how doctors make diagnoses.
  • Establishing a reporting and liability system.
  • Offering funding for research in the diagnostic process.

These goals offered a framework for how the system can be improved, says SIDM CEO Paul Epner.

“We certainly don’t want to undermine the patient’s confidence in their healthcare provider; research suggests they’re getting it right 90 percent of the time. But, if you’re a pilot, for instance, talking about landing safely only 90 percent of the time isn’t great,” Epner told Healthline.

Epner says people have to be aware that the medical system isn’t perfect. Like any other service, it’s contingent on human successes and human errors.

But that’s no excuse to not institute needed change.

One area Epner zeroes in on is medical school education. He says med students tend to be taught “by rote,” or basically recognizing patterns.

What doesn’t necessarily happen is that future doctors are taught about “bias or reasoning and the pitfalls that go along with reasoning long term,” he added.

“It’s important to create curricula that will begin to do that — introduce the notion of bias, cognitive bias — into the medical school curriculum, so that physicians, nurses, and others involved are able to reach appropriate diagnoses,” Epner said.

How to address the persistent issue of medical misdiagnoses has been the driving force behind Dr. David Newman-Toker’s career.

The director of the Armstrong Institute Center for Diagnostic Excellence at Johns Hopkins Medicine, Newman-Toker echoes Epner in saying that this is an issue that hasn’t been scrutinized and discussed enough in the general discourse.

He says the NAM and SIDM report in 2015 did a powerful job elevating the conversation on the national stage, but issues that are so complex with so many variables and moving parts like this one tend to elicit responses from people that “it’s all too complicated,” “it’s too difficult,” or “we can’t do anything about it.”

“The thing is, everybody can take action by starting to measure diagnostic error in an institution. Almost every hospital, for instance, has an event-reporting structure for patient safety, but most don’t have a place to even put down diagnostic errors. There’s no drop-down option that says ‘diagnostic error,'” Newman-Toker told Healthline.

He says that when this simple tool was added to Johns Hopkins’ system, it “dramatically enhanced our capabilities.”

It’s a “cheap intervention” that “any institution could take on,” Newman-Toker added.

Epner says the problem is most hospitals don’t take any measure of tracking diagnostic error.

One issue is when you have a delayed diagnosis. A person might not get diagnosed in 3 hours or even 3 weeks or longer.

As a result, inaccurate diagnosis might not be counted or recorded.

He adds that another issue is when diagnostic errors are detected and recorded, the way they’re dealt with is flawed.

For example, in some instances, if it’s an issue of a doctor’s judgment call, it might go to a “peer review,” treated as an “individual aberration” instead of a “systemic problem,” he explains.

Through his center at Johns Hopkins, Newman-Toker is helping address diagnostic error in three big areas: infections, vascular events, and cancers.

A lot of the work he’s been doing has centered around stroke and observing the problem of stroke misdiagnoses from several key angles, or “four T’s”: teamwork, technology, training, and tuning.

For instance, he says there needs to be a greater emphasis on the collaborative nature between medical professionals and a reduction on the focus on “heroism” on the part of individual clinicians.

“You deliver a better diagnosis with everybody’s help,” he said.

When it comes to training, there needs to be better recognition of less-obvious symptoms. When it comes to stroke, it won’t always manifest itself in paralysis on one side or someone having difficulty speaking.

He says instead what could look like simple dizziness could be a sign. As a result of pinpointing these less-apparent symptoms, medical training needs to move toward simulations, taking real-world data from patients in clinical trials.

Newman-Toker and his team developed a process for assessing dizziness from what could be stroke symptoms from those produced by inner ear conditions.

He says training medical interns, just out of med school, in this process made their diagnoses “twice as accurate” as their counterparts.

Essentially, Newman-Toker says new, innovative approaches that are inclusive of a wide range of diagnoses need to be integrated as more of the norm in training.

Improving diagnoses has become a key issue for healthcare stakeholders across the board.

For example, Ron Vianu, CEO of Covera Health, has been taking a tech-specific approach to help improve diagnostic outcomes in the radiology field.

Vianu says a lot of people, when they go in for an MRI scan, for instance, incorrectly assume that radiology is 100 percent accurate all the time.

As with other medical fields, it’s very much prone to human and technological error.

A physician might incorrectly interpret an image, or a facility’s older or out-of-date machinery might not produce the clearest image.

To address these problems, the company provides a quality clinical analytics platform to healthcare companies to reduce radiology misdiagnoses.

The company partners with radiology centers throughout the United States, essentially offering a way radiologists can assess what common errors are, how they’re made, and ways to avoid them, based on info culled from tens of thousands of patients-worth of data.

Vianu told Healthline he views Covera Health as “the new science in healthcare.”

“We’re trying to create a standard around measuring quality and providing useful information back to providers and payers (patients). I think the future of healthcare will be around quality analytics,” he said.

“In 5 years, people will look back and think, efforts to understanding quality weren’t the norm? How is that possible?” he said of where he views the future of the field.

Whether it’s AI analyzing mass amounts of patient data to help doctors better understand where they might go wrong to changing the way medicine is taught, is the medical community receptive to critiques and suggestions about how to ensure misdiagnoses aren’t the norm?

“Most physicians are aware the problem exists. Many of them are aware they themselves have made diagnostic errors. But it’s a relatively low level in their minds that they even make diagnostic errors to begin with,” Epner said.

He says that, in general, doctors need to be a bit more “reflective” on this issue, accepting that “to err is human.”

From an institutional standpoint, he says oftentimes a doctor will never find out they made a mistake.

Epner explains that if someone goes to the emergency room and is incorrectly discharged and eventually relapses because the problem wasn’t correctly addressed, they most likely will be treated by a different doctor on the scene.

“The original physician will never find out about it,” he added. “Even in primary care settings, so many patients don’t have a personal relationship with their doctors as we have had historically in the past.”

He says some sort of patient-reporting system should become the norm, so doctors know when a mistake was made and improve upon that.

But what should patients do?

Newman-Toker echoes the point about feedback, suggesting patients could take a role in self-reporting to doctors and medical institutions.

He says going for a second opinion after an initial diagnosis could be a good option, but even more helpful is to come prepared with questions.

Newman-Toker says that since doctors increasingly have less time to spend with the patients who come into their offices, you should come prepared with specific questions.

Ask them: What is the worst thing this could be and why isn’t it that?

“If the doctor either blows you off — in which case definitely get a new one — or can’t give you a compelling answer to those questions or gets upset at you for asking those questions, stay vigilant,” he stressed.

He adds that you should be sure to call the doctor’s office if something doesn’t feel right, or if you don’t think you’re necessarily getting better.

Some groups are more likely to face misdiagnoses than others.

Newman-Toker notes that women and minorities are 20 to 30 percent more likely to be misdiagnosed.

He uses stroke as a key example, adding that young people are seven times more likely to be misdiagnosed than older people who have a stroke.

This is a topic that Scott is particularly passionate about.

In the years since her misdiagnosis and eventual accurate diagnosis of heart failure, she’s become a WomenHeart Champion, a spokesperson for WomenHeart: The National Coalition for Women with Heart Disease, an advocacy organization for women living with heart disease.

Calondra Tibbs, MPH, chief operating officer of WomenHeart, told Healthline that “women need to realize that heart disease is the number one killer, resulting in 1 in 4 deaths in women.”

Despite this fact, it’s often mislabeled as a “men’s disease,” making it particularly prone to misdiagnosis.

She stresses it’s also a crucial issue for women of color, like Scott, who’s black.

For instance, recent research has shown that sudden cardiac death is three times higher for black women, while other research has shown that heart failure is increasing for people under 65, especially African American adults.

For Scott — whose father had a heart attack and grandmother also had an enlarged heart — life has changed following her diagnosis. She also has been given a new perspective on the importance of being vigilant about her health.

She says “you should know your body,” and that if something is wrong, pay attention and contact your doctor.

“If you see something, say something,” she added. “The worst that can happen is you find out that it’s nothing. If you find something and find it early enough to treat, well anytime you’re able to diagnose early, you’ll have a better outcome.”