Tips for patients to help ensure an accurate diagnosis

If you weren’t aware of the prevalence and severity of diagnostic errors, (misdiagnosis, missed diagnosis, delayed diagnosis) maybe you should be now.

The Institute of Medicine (IOM) released a new report called, Improving Diagnosis in Health Care. The report cited that most people will experience one or more diagnostic errors over their lifetimes. It also revealed that diagnostic errors contribute to 10 percent of patient deaths and account for up to 17 percent of hospital adverse events. In addition, diagnostic errors are the leading type of paid medical malpractice claims. Because of a scarcity of reporting and research on diagnostic errors, those numbers might be very conservative.

According to a study published in BMJ Quality & Safety, “The frequency of diagnostic errors in outpatient care,” diagnostic errors affect at least 1 in 20 U.S. adults or approximately 20 million adults every year.

It happened to me. Ten times to be exact. During a 16-month, severe chronic pain condition, I received ten misdiagnoses from 11 physicians. Along with the ten misdiagnoses came 15 procedures and tests. Luckily, I found my own diagnosis in a New York Times article, “In Women, Hernias May Be Hidden Agony.” The surgeon and hernia specialist featured in the article, Shirin Towfigh, MD, diagnosed me correctly and performed 3-hour surgery to repair a muscle tear in my C-section site and an inguinal hernia with a nerve pinched in the hole. I’ve been pain-free for over four years and I am very grateful to her.

Arriving at a diagnosis can be an elusive process, not always easily uncovered through physical exams or tests. The IOM report produced a number of recommendations for clinicians and insurers to improve diagnosis. The report also emphasized the importance of patient and family collaboration with their doctors.

As a patient, you are in partnership with your doctor. To be an effective team player you need to be an active participant in your care, not simply a passive recipient. If you aren’t feeling well enough to be proactive and collaborate with your doctor, ask a loved one to assist.

Tips to help ensure an accurate diagnosis

Symptom diary

Before you see your doctor, create a symptom diary. Document your symptoms in a notebook, on your smartphone or other electronic device. Answer these questions:

  1. What are your symptoms?
  2. Where are they located?
  3. What makes your symptoms worse or better, such as exercise or eating a meal?
  4. Time of day your symptoms are better or worse?
  5. Was there a physical event or new medication associated with the onset of your symptoms?
  6. What you have tried to alleviate your symptoms? Was anything successful?
  7. If pain accompanies your symptoms or pain is the symptom, track it. On a scale of 1 to 10, 10 being the worst, document it daily.
  8. Bring your symptom diary with you to see your doctor and discuss it with him/her.

List of questions before you see your doctor

Create a list of questions before you see your doctor. This allows you to think about what you need to focus on. Document the answers and other information the doctor explains.

You are given a new diagnosis

If you are given a new diagnosis from your doctor, consider asking these questions:

  1. What is my diagnosis and what does it mean?
  2. Are there any other possible diagnoses?
  3. How did you arrive at this diagnosis? (i.e., test results, physical exam, radiology report, etc.)
  4. What is my treatment plan?
  5. When do I follow up with you about my treatment plan?

If you suspect a misdiagnosis

If your treatment is not helping your symptoms, discuss it with your doctor.

It’s possible that there is an alternate treatment that might work better for you.

Ask your doctor if it’s possible that you might have a different diagnosis.

Ask that tests be repeated or read by a different clinician

Tests can be wrong, or they can be read incorrectly. Ask that tests be done a second time or read by another doctor. Some doctors just read the radiology reports from imaging studies you’ve had. Ask that your doctor or another doctor to read the actual tests.

Get copies of your medical records

Obtain copies of your pertinent tests such as MRI, CT scan, x-ray, blood test results, surgery/op report.

Get a second opinion

Patients are sometimes afraid to get second opinions. Please don’t be. It is your right and should not offend any medical professional.

  • Ask a doctor and/or RN you respect and have confidence in to recommend a specialist.
  • Contact your loved ones and colleagues for a recommendation for a respected physician to see for a second opinion. You will see some of the same names duplicated.
  • Bring copies of your pertinent medical records such as MRI, CT scan, x-ray, surgery report, and blood test results, to each visit with a doctor.

Research a diagnosis

If you are informed about your diagnosis, you will be better prepared to ask questions. Go to credible websites such as:

  • medical schools, medical societies or academies
  • disease organizations
  • government websites

Bring a loved one with you

It’s not easy for anyone to correctly remember medical information explained by a doctor. Especially if you aren’t feeling well. Bring a loved one with you to each appointment with a doctor. Ask that person to take notes. You can review the information at a later time.

Martine Ehrenclou is a patient advocate.  She is the author of Critical Conditions: The Essential Hospital Guide to Get Your Loved One Out Alive and the Take-Charge Patient.

Image credit: Shutterstock.com

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