WASHINGTON — More money should be spent on researching ways to reduce misdiagnosis and to get patients diagnosed more quickly, several experts said here.
“For too long, the problem of inaccurate and delayed diagnosis was not given the attention it deserved,” Paul Epner, MEd, CEO and co-founder of the Society to Improve Diagnosis in Medicine (SIDM), said Thursday at a briefing his organization sponsored on the problem. “It’s becoming increasingly clear we must make identifying and testing possible solutions to help us prevent [misdiagnosis] an urgent national research priority. We’re making important progress on this front because Congress has taken notice.”
Epner thanked senators Chuck Schumer (D-N.Y.), Roy Blunt (R-Mo.), and Chris Van Hollen (D-Md.) as well as representatives Ben Lujan (D-N.M.) and Gus Bilirakis (R-Fla.) for their work on the issue, noting that this year’s House Appropriations bill “proposes increasing dedicated funding for diagnostic quality and safety research to ‘not less than $4 million,’ up from $2 million last year. It’s a small step, but in the right direction. The federal investment in research remains trivially small in relation to the public burden.” About 12 million adults “receive an inaccurate or delayed diagnosis annually” at a cost of more than $100 billion, he added.
The “Big Three” Disease Categories
David Newman-Toker, MD, PhD, professor of neurology at Johns Hopkins University, in Baltimore, presented results from a study he and his colleagues performed on the most common missed or delayed diagnoses. The study, published in Diagnosis, looked at nearly 12,000 diagnostic error malpractice cases and found that the “Big Three” disease categories — vascular events, infections, and cancers — accounted for 74.1% of high-severity cases, with the top five diseases in each category accounting for 47.1%.
The most frequent diseases in each category were stroke (among vascular events), sepsis (infectious diseases), and lung cancer (cancers). Roughly half of the cases involved primary care clinicians; the rest were divided between medical specialties like cardiology, gastroenterology, and neurology (16.3%), surgical specialties (15.4%), and diagnostic services like radiology and pathology (14.8%).
“Serious harms are disproportionately due to failures in clinical judgment, rather than problems with communication or closing the loop on test results,” the authors concluded. “This suggests it will be necessary to develop systems solutions to solve cognitive problems (e.g., device-based decision support, simulation to improve medical education, diagnostic performance dashboards, or access to specialists via tele-consultation). Research and quality improvement initiatives should target interventions that improve clinical diagnosis for high-harm diseases in specific practice settings such as stroke in the ED [emergency department], sepsis in the hospital, and lung cancer in primary care.”
“Diagnosis Isn’t an Endpoint”
Helen Burstin, MD, MPH, executive vice president and CEO of the Council of Medical Specialty Societies, pointed out that making the right diagnosis can be a complex issue. “We need to put the right resources in front of folks to make this work better … Diagnosis isn’t an endpoint; symptoms can have multiple explanations, and getting to an accurate diagnosis quickly can be very challenging.”
She cited the example of her own father who, in his early 80s, was having difficulty urinating. “He saw his doctor, who assumed it was his prostate … [The doctor] completely missed the fact that he had bladder cancer,” which wasn’t diagnosed until it was metastatic, and her father died soon after the correct diagnosis was made, she said. “Improving diagnostic accuracy and timeliness takes a team.”
“John Eisenberg [the former director of the Agency for Healthcare Research and Quality] loved to say, ‘Patient safety is a team sport, and the patient is a valued member of that team,'” she said. “The ability for a patient to advocate for themselves and be an active member of that team is critically important.”
Newman-Toker also emphasized the need for teamwork. “Eventually we expect substantial amounts of computer-based diagnostic decision support … [but] being able to ‘phone a friend’ is really a critical piece of the story if we’re going to fix diagnosis tomorrow,” he said. Johns Hopkins has embraced that idea — “we’ve added a ‘lifeline call to phone a friend, a specialist’ if a patient comes in with dizziness” and the emergency physician isn’t sure whether the patient is having a stroke. “We provide a teleconsultation service immediately to them.”
Getting Non-Physicians Involved
During a question-and-answer session, an occupational therapist asked about ways to get non-physician clinicians more involved in the diagnosis process. Thomas Heymann, MBA, president and executive director of the Sepsis Alliance, a non-profit organization that educates patients and providers on sepsis, said that in one small pilot study his organization performed in conjunction with the American Physical Therapy Association, a group of physical therapists in upstate New York were trained to perform brief sepsis screening on the patients they treated during in-home visits. “In 6 months, they uncovered 250 sepsis cases,” he said. “It’s about empowerment of all healthcare professionals to be on the lookout.”
Having physicians learn from their mistakes is important to improving diagnoses, Burstin said. “All of us can immediately think of a patient they saw where there is clearly an issue … Some of it is that we don’t know what the ultimate diagnosis was,” she said. “Feeding that information back to clinicians is such a powerful learning tool … Those opportunities [are needed] for better systems, better understanding, and outcome tracking.”
Several of the panelists told their own misdiagnosis stories. Epner said that when he was admitted to the hospital at age 27 with Crohn’s disease, he developed sepsis and his family was called and told that he might not survive the night. He did survive, “but 55 years later, my dad was in the hospital for the flu; the day he was admitted, I called that evening and said, ‘Do I need to rush down there?’ They said, ‘He’s fine; come in the morning.’ Within the hour, he was dead — septic.”
Diana Cejas, MD, a pediatric neurologist at the University of North Carolina, in Chapel Hill, told the story of a lump in her neck that doctors told her for years — including while she was in medical school — was nothing to worry about. Eventually, during her second year of residency, she was diagnosed with a carotid body paraganglioma, and needed two surgeries — one to remove the tumor and another to remove the surrounding tissue, since the cancer had spread to her lymph nodes. As a result of complications from her second surgery, she suffered a stroke; her left arm is still weak and she has difficulty swallowing. “Looking back, I just wish someone had listened to me,” she said.
“My illness affected the way I practice as a physician; I find myself on the patient’s side more than ever before … It’s going to take all of us working together to improve diagnosis.”