No one wants to hear they have cancer or another serious illness. It’s scary and overwhelming. What’s worse? A doctor telling you he/she failed to realize that you’ve had cancer (or another serious illness) for weeks or months, delaying potentially life-saving treatments. Also horrible? Receiving treatments for an illness you don’t even have. Diagnostic errors, including missed, incorrect or delayed diagnoses are common and dangerous. This is upsetting to me and should be to you as well. What are doctors doing to reduce diagnostic errors? What can you do?
How common are diagnostic errors? How serious?
Research shows doctors make diagnostic errors between 10-15% of the time.
According to the Society to Improve Diagnosis in Medicine (SIDM), every nine minutes, someone in a US hospital dies due to an incorrect or delayed diagnosis. This translates to an estimated 80,000 deaths a year in US hospitals due to diagnostic errors.
And it’s not only a problem in hospitals. Diagnostic errors affect 12 million adults in outpatient settings every year in the US and are the most common cause of medical errors reported by patients.
Paul Epner, CEO and co-founder of SIDM, sums up the scope of the problem:
“Providing an accurate medical diagnosis is complex and involves uncertainty, but it’s obviously essential to effective and timely treatment. Nearly everyone will receive an inaccurate diagnosis at some point in their life and for some, the consequences will be grave.”
Good news – experts are tackling the issue!
Diagnostic errors are getting some much-needed attention. Over 60 premier healthcare and patient advocacy organizations are part of the newly formed SIDM led Coalition to Improve Diagnosis (see the list of participants here). The coalition is working to identify and spread practical steps that will help doctors provide diagnoses that are “accurate, communicated and timely”.
Why is determining an accurate diagnosis so hard?
Diagnosing an illness can be tricky. Doctors use their judgment, experience and test results while considering possible diagnoses. But it’s not straightforward – every patient is different, and symptoms can vary. Additionally, there are factors beyond the control of the doctor that can make it hard to determine a correct diagnosis.
The Coalition to Improve Diagnosis is off to a promising start! They identified obstacles they believe impeded diagnostic accuracy, including:
Incomplete communication during care transitions.
Important information can slip through the cracks when patients move between facilities, doctors or departments.
Lack of measures and feedback.
There are no standardized measures for hospitals, health systems, or doctors to understand how the accuracy of their diagnoses, to guide any improvement efforts or to report diagnostic errors. Furthermore, doctors and other providers rarely get feedback if a diagnosis was incorrect or changed.
Limited support to help with clinical reasoning.
Doctors don’t always have access to tools and resources that can efficiently help them make diagnoses. Since there are hundreds of potential explanations for any one particular symptom, the lack of support for clinical reasoning can impede timely, accurate diagnoses.
Patients and healthcare providers feel rushed by time limited appointments, which can make it hard for doctors to get a complete history, an essential part of the diagnosis process. Additionally, short, rushed appointments make it difficult for doctors to thoroughly discuss any further steps in the diagnostic process.
The diagnostic process is complicated.
Patients don’t have the information they need. Patients don’t know what questions to ask, whom to notify when changes in their condition occur, or what constitutes serious symptoms. Additionally, it’s not clear who is responsible for closing the loop on test results and referrals. Finally, there are uncertainties around how and when doctors should follow-up with patients.
Lack of funding for research.
More research is needed to evaluate the impact of inaccurate or delayed diagnoses on healthcare costs and patient health. Furthermore, there is a very little published evidence that identifies what improves the diagnostic process.
Next steps for the coalition.
As you can imagine, there is much work to be done. The coalition members are working to improve the accuracy and timeliness of diagnoses. Their projects include:
- Providing online tools that help physicians recognize and avoid diagnostic pitfalls
- Improving medical education for new practitioners
- Developing tools to help patients as they seek a diagnosis
- Creating tools that empower doctors, patients and caregivers to communicate test results in plain language
It’s a long road.
A significant improvement in diagnostic accuracy is not around the corner. Improvement will take years of dedicated efforts. And of course, not all doctors and hospitals will adopt the recommendations with the same enthusiasm or time table.
What can patients do in the meantime?
Partner with your doctor in the diagnosis process. Be an engaged, active member of your medical team.
- Communicate clearly with your medical team. Be sure they understand your “story”.
- Don’t let the doctor cut you short. Because your story is a key to a proper diagnosis, make sure your doctor hears everything. If your doctor interrupts you, continue with your story when he/she is done speaking. Be persistent. To learn more on this important topic, read my blog post: Doctors Interrupting Patients Can Impact Our Health
- When asked yes/no questions, feel free to elaborate if you feel it would be helpful.
- Do not grow tired of telling your story, no matter how many times you must repeat yourself. Leaving out important details can make it harder for a doctor to get a correct diagnosis.
- If the diagnosis doesn’t make sense to you, tell your doctor, even if you’ve already left the office. Call or email with your concerns.
- Ask your doctor if there is a list of possible diagnoses. Even when on diagnosis is likely the cause of your symptoms, your doctor may have a few other conditions in mind.
- Don’t assume that “no news is good news”. Mark your calendar with the date of your expected test results; call the doctor’s office if you don’t hear by the set date.
- Don’t assume each specialist on your team is communicating – they frequently do not send or receive reports to/from other doctors.
- If something doesn’t seem right, speak up.
- Get a second opinion – from a different hospital or medical group if possible. Get a third opinion if needed.
- If you feel your doctor doesn’t listen to you, try to find a new doctor.
Since knowledge is power, read these blog posts to learn more about reducing your risk of diagnostic error:
- 10 Steps to Reduce Your Risk of Diagnostic Error.
- Radiology Diagnostic Errors Are Surprisingly High.
- Should you Speak Up if You Think Your Doctor is Wrong? YES!
- Learn a Lesson From Serena Williams: Trust Your Instincts When it Comes to Your Health.