Misdiagnosis: A Chronic Condition Looking for a Cure

According to a report in the BMJ Quality and Safety Journal, each year in the U.S. approximately 12 million adults or 1 out of 20 patients who seek outpatient medical care, are misdiagnosed in a way that could cause severe harm.

These alarming statistics are further reinforced by a new study from the Institute of Medicine (IOM) published in September, 2015, which predicts that:
“most people will experience at least one diagnostic error — an inaccurate or delayed diagnosis — in their lifetime, sometimes with devastating consequences.”

The IOM report includes several examples where misdiagnosis occurred.
A doctor mistook a blood clot in the lungs of a 33-year old woman for an asthma attack, leading to her death.
An urgent care clinician misread an X-ray and diagnosed a 55-year old man with an upper respiratory infection instead of pneumonia. He died as a result.
Doctors at a trauma center decided not to perform a CT scan on a 21-year old stabbing victim and missed a knife wound penetrating several inches into his skull and brain.
A newborn baby suffered preventable brain damage when doctors failed to test for high levels of a chemical in his blood that had turned his skin yellow from head to toe.

What does this say about the current level of patient care in the United States?  It says that providers who are in a position to make a diagnosis for a patient, along with the patients and their caretakers or family, need to pay more attention to what is going on. It says that we patients are tolerating a healthcare system where we too often do not experience full disclosure from our clinicians. It is says that our system does not encourage collaboration and communication between healthcare clinicians and patients. It tells us that us that misdiagnosis is raising the cost of care for all of us.  It is says that each of us will face a potentially life threatening situation over the course of our healthcare that could be addressed and reversed if we pay attention.

We live with a system that is ill-designed to support the diagnostic process because our clinicians are limited by the time they are allowed to spend with each patient. As a result, some do not always follow up with tests and procedures that they have ordered.

Even if they follow up they are often not provided with adequate feedback about the accuracy of a diagnosis. Perhaps most disconcerting, ours is a culture of care that discourages transparency and disclosure of diagnostic errors, which impedes attempts to correct these problems.

Diagnostic errors are often incredibly harmful to patients, as they may lead to delays in treatment, lack of treatment, inappropriate, or unnecessary treatment, all of which can have physical, psychological and financial consequences.

At a recent conference sponsored by the Society to Improve Diagnosis in Medicine, clinicians, hospital administrators and patients from all over the world gathered in Washington D.C. to recognize and discuss this very problem.  They focused on issues related to:
• The impact of error in medical diagnosis and contributing factors.
• Solutions and prevention strategies.
• Sharing research methods and identifying ways to measure diagnostic error.
• Participating in the development of research, education, technology and practice strategies to reduce diagnostic error.
• Developing a community of advocates across the healthcare spectrum.

The Society to Improve Diagnosis in Medicine also produces a Patient Tool Kit, which is free of charge to patients and can be downloaded.

Peggy Zuckerman, a member of that society, patient advocate and member of the Executive Committee of the Society for Participatory Medicine sums it up well.  She says: ”this is not a new problem, but a problem that has not had a home.”

What can the patient do to protect him/herself?

1. Become fully engaged in your healthcare and communicate completely, accurately and thoroughly  when you visit your clinician
a. Bring written notes with you to the visit
b. Bring a pad, paper, tablet or other device to take notes
c. Go prepared to challenge what you do not understand and ask lots of questions.  Do not be put off by the pressures of time.

2. Understand your own and your family history
a. Have a list of all the procedures, treatments, surgeries you have had in the past
b. Genetics plays an important role in your overall health profile so try to have as complete a family history as possible.

3. Be proactive
a. Use all of the available resources to learn everything you can about your health conditions, tests and procedures and medications, including web resources, and social networks.
b. Coordinate your care so that all of your clinicians are up to date on all of your conditions and have your full information at the point of care.
c. Solicit the advice and assistance of a healthcare advocate if you feel unable to cope and manage your health by yourself.
d. Never assume that no news is good news when you have not received the results of a test or procedure.  Make sure you are diligent about receiving the results and discussing them in detail with your clinician.
e. Be informed and involved in all health decisions.

There is a way to cure medical misdiagnosis. It can be resolved with full collaboration and cooperation of all members of the healthcare team, (including the patient), who have to acknowledge this weakness in our system and be diligent about considering all possible options when addressing a health concern.


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3 Responses to “Misdiagnosis: A Chronic Condition Looking for a Cure”

  1. Peter Elias says:

    Excellent post, full of practical and useful information. I want to expand on just one point: “Go prepared to challenge what you do not understand and ask lots of questions. Do not be put off by the pressures of time.” This is a really important issue, but not easy to fix.

    It is worth remembering that the clinician is likely being pressured to maximize throughput and also probably has a pile of tasks in queue for which no time has been scheduled. (I typically respond to 50-100 clinical messages, lab reports, triage notes, refill requests, discharge summaries, consult notes daily and there is not provision for that in my schedule.)

    The clinician and the patient should share responsibility for time management and should BOTH be willing to say out loud that the current visit doesn’t allow enough time to cover all the issues properly, and then decide what to prioritize for today and how much time to set aside for a future discussion.

  2. Cameron says:

    Thanks for writing this, Nancy. To your list of how patients should empower and inform themselves, I would add that they should seek out and use the technology coming out as I write this.

    To get “full collaboration and cooperation of all members of the healthcare team (including the patient)”, the patient needs to be very well-informed. How? Probably not with online symptom checkers. Another recent BMJ study that showed their disappointing (and often unnecessarily alarmist) results on some pretty easy cases.

    But a new generation of technology for sophisticated differential diagnosis and guidance on appropriate testing is here, and whenever my friends or family have an issue, I direct them to my company, PhysicianCognition.com to use the free beta app there. We think high-level medical expertise should be as easy to get, and as financially accessible, as a Google search.

    Patients should know at least as much as the rest of the team they’re collaborating with.

    Physician Cognition

  3. In the current SPM Journal, the article, “What Do People Want from Their Healthcare?” is written by Dr. Leana Wen and colleague and gives a related perspective. Not surprising, Dr. Wen’s survey shows that patients recognize when they are being heard by their doctors, what the barriers to a more participatory relationship can be, and the dissatisfaction and additional barriers that can come between the patient and his care providers.

    Dr. Wen writes about the issue of “When Your Doctor Won’t Listen”, and reminds us that poor communication at the initial search for a diagnosis carries forward problems that impede the proper treatment as well!

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