Most Americans will experience at least one wrong or delayed diagnosis at some point in their lives, a blind spot in modern medicine that can have devastating consequences, says a new U.S. report that calls for urgent changes across health care.
Getting the right diagnosis, at the right time, is crucial, but Tuesday's Institute of Medicine report found diagnostic errors get too little attention.
The biggest needed change: "Patients are central to a solution," said Dr. John Ball of the American College of Physicians, who chaired the IOM committee.
That means better teamwork between health providers - doctors, nurses, lab workers - and making the patient be part of the team, too. Providers must take patients' complaints more seriously, get them quick copies of test results and other records, and encourage them to ask, "Could it be something else?"
Another culture shift: When the patient's third doctor finally gets the right diagnosis, it should become the norm, not an embarrassment, for that physician to call the others and say, "It turned out this patient had X and not Y," added committee member Dr. Christine Cassel, president of the National Quality Forum. "That's the only way we can really learn."
Possibly the most well-known diagnostic error in recent memory occurred last year when a Liberian man sick with Ebola initially was misdiagnosed in a Dallas emergency room as having sinusitis. Thomas Eric Duncan returned two days later, sicker, and eventually died.
Diagnosis problems seldom make such dramatic headlines. Consider the woman who told the IOM of going to the emergency room with heart attack symptoms only to be misdiagnosed with acid reflux and was fussed at for questioning the doctor. She'd suffered serious heart damage by the time she returned. Other times, patients may not even realize they experienced an error, such as the cancer diagnosis delayed because the doctor never called with the results of a pathology report.
Tuesday's report found there's no good count of diagnostic errors, or of how often they lead to serious consequences. But it cited one conservative estimate that 5 percent of adults who seek outpatient care each year experience a diagnostic error, a number that adds up over time. Diagnostic errors make up the leading type of paid malpractice claims and are almost twice as likely as other claims to have resulted in a patient's death.
Even among the IOM committee's medical specialists, "many of us had experienced what we would define as a diagnostic error," Ball said.
The prestigious Institute of Medicine kicked off a revolution in health quality improvement back in 1999 when it estimated between 44,000 and 98,000 people a year die of preventable medical mistakes in hospitals. In the years since, the focus was more on hospital infections and medication errors rather than diagnostic errors.
Those errors aren't part of standard medical reporting, and even the autopsies that once helped uncover them have become rare. Tuesday's report urged health organizations to better identify diagnostic errors so providers can learn to prevent them - and called on the government to step up research, including funding an autopsy study to help quantify the problem.
One survivor of a diagnostic error says even when patients can tell something's wrong, it's hard to know what to do next.
Peggy Zuckerman was told a dangerous case of anemia was due to a stomach ulcer, but treatment didn't help and the hospital specialist discounted other symptoms. After eight months, testing showed she had advanced kidney cancer.
The woman was lucky: Treatment worked. Only later did she see health records showing a pathology report had all but ruled out an ulcer during her first visit.
"I had never been sick before. I didn't know how you handle things," recalled Zuckerman. Twelve years later, she's now a patient advocate who tells people to get all their records immediately so they'll know what to ask.
"This is not about blame. It's about understanding how errors arise and what we can do to prevent them," said Dr. Mark Graber of the Society to Improve Diagnosis in Medicine, which prompted the IOM study.