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Is your doctor sure about that?
A misdiagnosis is a patient safety concern. Here’s what has to happen for accuracy to improve.
By Dan Berg
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The World Health Organization marks Sept. 17 each year as World Patient Safety Day. This year, the focus is on improving diagnosis for patient safety, offering the slogan “Get it right, make it safe!”
You’re forgiven if you haven’t thought much about diagnostic safety. We expect safety to be a priority in health care, a corollary to Hippocrates’ fabled command, “Do no harm.” But the reality — by no means intentional, of course — is that people are harmed every day. Many people. The numbers are staggering. Estimates for the number of people experiencing serious harm or death as a result of wrong, delayed or miscommunicated diagnosis range from 500,000 to 800,000 annually in the U.S. alone.
Since 2005, when my daughter Julia died as a consequence of diagnostic error (she died of internal bleeding four hours after an ill-advised surgery), my wife and I have told her story at medical conferences, to patient advocacy organizations, in hospitals, medical schools and more. Stories are compelling, and this one grabs the attention of professionals and aspiring providers, a cautionary tale of good medicine gone bad. Julia had everything going for her: a great hospital, skilled providers, engaged parents. But still, the medical team locked in on an admitting diagnosis that was a symptom rather than a cause and, over six days, tests, imaging and labs were all interpreted to support that original error.
Over the last 10 years, in particular, there has been considerable research into how diagnostic accuracy can be improved. There are system changes that can make a difference; for instance, better charting and communication at the point of patient handoffs, forced feedback loops to make sure that discovered errors are reported back to their source, and institutional leadership that sees errors as learning opportunities rather than incidents to be concealed or denied.
And, as if the issue of diagnostic safety isn’t challenging enough on its own, well-documented racial disparities in health care often begin at the point of diagnosis.
While the issue is global, each diagnostic error begins hyper-locally, at an encounter between a patient and a provider. This is the front line of diagnostic safety and, in many ways, low-hanging fruit. If providers would consistently lead with curiosity, embrace and communicate uncertainty as it (frequently) exists, and enlist the patient as a partner in the search for a diagnosis that leads to a treatment plan, better outcomes are likely if not assured.
That partnership is important. As patients we need to advocate for ourselves, ask questions (What else could it be? Could there be more than one thing going on?) and be confident that we are the experts on our own bodies and what we are experiencing. But not all patients are well-prepared for a medical encounter. Sometimes the circumstances are sudden and unexpected, but even at scheduled appointments, few patients are coached in advance to speak up, or advised to prepare, using “patient toolkits,” or “symptom checklists,” in advance of the clinic visit.
What if, rather than depending on the initiative of patients and families to be prepared, providers used an exam room script to activate patient participation at the point of care. Rather than simply asking “what brings you in today?” what if the nurse or doctor would say, simply and affirmatively, “take your time to tell me what’s on your mind — I’ll listen carefully, and then, together, let’s try to figure out what’s going on?”
Can it be that simple? Probably not. But it’s a start.
Improving diagnostic safety will require pressure on four levers of change: education, systems, policy and culture. All over the world, passionate people are shouldering the hard work needed to move medicine toward safer diagnosis. Many of them — experts, learners, early career professionals, researchers, educators and patients — will gather next month at the University of Minnesota, which is hosting the national conference Diagnostic Excellence 2024.
We will all benefit from their work, and that of the broader community seeking to improve diagnosis in medicine. This work is saving lives.
Dan Berg, of Minneapolis, is an advocate for patient safety.
about the writer
Dan Berg
The Minneapolis Foundation is partnering with donors to provide more than $1.3 million for 2024-25 and is calling on others to lean in as well.