Overcoming Misdiagnosis

Introduction

If you have ever left an appointment thinking, “That does not sound like what I am going through,” you are not alone. Diagnostic errors are common and can cause serious harm. Large national studies estimate that hundreds of thousands of people in the United States experience death or permanent disability each year because of diagnostic errors. Evidence from the National Academies suggests that most people will experience at least one diagnostic error in their lifetime.

This guide is designed to help you:

• Understand what misdiagnosis is and why it happens
• Recognize warning signs that your diagnosis may not be right
• Speak up, get second opinions, and use your rights as a patient
• Work with advocates, including Understood Care, to feel heard and supported

Throughout, you will see some of the same key points that Debbie, a Care Advocate at Understood Care, shares with patients in her video about misdiagnosis and speaking up.

What Is Misdiagnosis?

Misdiagnosis is a type of diagnostic error. It can include:

• Receiving the wrong diagnosis
• Having a serious condition completely missed
• Having a diagnosis made too late to prevent harm

The Agency for Healthcare Research and Quality (AHRQ) describes diagnostic errors as failures to explain a patient’s health problem correctly or in a timely way, or failures to communicate that explanation to the patient.

How common are diagnostic errors?

Recent research funded by AHRQ and published in a major medical quality journal estimated that, in the United States each year, diagnostic errors are associated with an estimated 371,000 deaths and 424,000 cases of permanent disability.

Key points from this research:

• Diagnostic errors can happen in primary care clinics, emergency departments, and hospitals
• A relatively small number of conditions, including major vascular events, infections, and cancers, account for most serious harms from misdiagnosis
• Vulnerable groups, including older adults and people facing barriers to care, may be affected more often

The National Academies report “Improving Diagnosis in Health Care” calls diagnostic error a blind spot in the health system and emphasizes that patients and families must be central members of the diagnostic team.

Why Misdiagnosis Happens

Diagnostic errors are rarely caused by a single mistake. They usually arise from several problems happening together.

Common contributors include:

• Limited time in appointments
• Incomplete medical history or exam
• Test results that are delayed, misread, or not followed up
• Communication breakdowns between different clinicians
• Assumptions or biases, such as focusing only on the “most likely” diagnosis
• Fragmented care, where specialists do not share information well

None of this is your fault. At the same time, there are practical steps you can take to lower your risk and to respond if something does not feel right.

How Misdiagnosis Affects You and Your Family

Health and safety effects

Misdiagnosis can lead to:

• Delays in getting the right treatment
• Unnecessary treatments or procedures
• Worsening of the underlying condition
• Avoidable hospitalizations or complications

These harms can be life changing.

Emotional and financial impact

You might experience:

• Feeling dismissed, anxious, or “crazy” for what you feel in your body
• Loss of trust in health care providers
• Extra costs from repeated tests, appointments, and medications

If this sounds familiar, it does not mean you are “difficult” or “overreacting.” It means your concerns deserve serious attention.

“That Does Not Sound Right”: Warning Signs To Pay Attention To

Debbie, a Care Advocate at Understood Care, often tells patients:

If you go to your doctor, hear a diagnosis, and your first thought is “No, that does not sound like what I am going through,” that is a signal to pause, ask more questions, and consider a second opinion.

Here are signs that your diagnosis may need another look.

Your symptoms do not match the diagnosis

Consider asking for a careful review if:

• Your main symptoms are not explained by the diagnosis you were given
• Your clinician does not examine the area that hurts or worries you
• You are told “it is just stress” or “it is just age” without much evaluation

You can say:

• “Can you explain how this diagnosis fits my symptoms?”
• “Are there other conditions we should rule out?”

Resources from the National Academies and AHRQ stress that patients’ descriptions of symptoms are a critical part of accurate diagnosis.

Your questions are brushed aside

Communication problems are a major contributor to diagnostic errors. Red flags include:

• Your questions are interrupted or answered vaguely
• You feel rushed and leave without understanding the plan
• You are discouraged from asking for more details or from bringing someone with you

AHRQ and the National Institute on Aging (NIA) highlight that patients who ask questions and share their concerns clearly help reduce the risk of errors.

Your treatment is not working as expected

Seek follow up if:

• Your symptoms are getting worse, not better
• You develop new or severe symptoms that were not discussed
• Medications cause serious side effects without a clear plan to adjust them

You can say:

• “This treatment does not seem to be helping. What else could be going on?”
• “Given these new symptoms, could my diagnosis be incomplete or incorrect?”

Your Rights: You Can Question Your Diagnosis and Ask For a Second Opinion

Debbie reminds patients that part of their rights in health care is the ability to question anything related to their care, including the diagnosis.

While specific rights can vary by state and health system, many patient bills of rights and hospital policies include the right to:

• Receive clear explanations about your diagnosis and treatment
• Participate in decisions about your care
• Refuse a recommended treatment, within legal limits
• Seek a second opinion from another qualified professional

The Joint Commission’s Speak Up program encourages patients to speak up if something seems wrong or confusing, and to know that they have rights regarding their care.

You are allowed to say:

• “I do not feel comfortable yet. I would like more information.”
• “Can you go over the test results with me?”
• “I would like a second opinion. Can you help me arrange that?”

How To Prepare To Speak Up

If you feel uneasy about your diagnosis, preparation can make conversations easier and more effective.

Expert resources from AHRQ, MedlinePlus, and the NIA suggest several practical steps.

1. Bring a written list

Before your visit, write down:

• All your symptoms, including when they started and what makes them better or worse
• Your full medication list, including over the counter drugs and supplements
• Past diagnoses, surgeries, and major health events

This helps your clinician see the full picture and reduces the chance that something important is missed.

2. Prepare your top questions

Because time is limited, experts recommend picking three to five questions you most want answered.

Examples:

• “What else could this be?”
• “What tests or referrals would help confirm this diagnosis?”
• “What warning signs should make me call you, go to urgent care, or go to the emergency room?”

3. Bring a support person

A family member, friend, or caregiver can:

• Take notes
• Speak up if you are feeling overwhelmed
• Help you remember what was said

This is especially helpful for older adults or people managing multiple conditions.

4. Use tools designed for patients

AHRQ offers a Question Builder tool and preparation cards to help you get ready for appointments, speak up, and take notes.

You can print these or keep similar notes on paper or your phone.

When and How To Seek a Second Opinion

Debbie’s advice is simple:

If you hear a diagnosis and it does not feel right, or you feel not enough time was spent getting to the heart of the problem, do not stay quiet. Ask for a second opinion.

High quality sources, including MedlinePlus and the American Cancer Society, note that second opinions can:

• Confirm the original diagnosis and plan
• Offer different treatment options
• Catch a missed or partially correct diagnosis

Situations where a second opinion is especially important

Consider getting another opinion when:

• The diagnosis is serious, such as cancer, a major operation, or long term treatment
• The treatment is risky, invasive, or has major side effects
• You are not improving as expected
• You feel your concerns are being dismissed or minimized

How to ask for a second opinion

You can say:

• “This is a big decision. I would like to get a second opinion before we move forward.”
• “Can you recommend a specialist I could see for another opinion?”
• “Will you help share my records with another doctor?”

MedlinePlus explains that many people seek second opinions and that it is reasonable to do so when you have doubts or want to be sure.

How Understood Care Advocates Can Help

You do not have to navigate this on your own. Understood Care connects patients, especially those with Medicare, with personal advocates who help coordinate care and make sure your voice is heard.

You can learn more here:

• Understood Care home page
• Meet Understood Care advocates

What advocates can do if you suspect a misdiagnosis

Working with an advocate, you can:

• Clarify your story
  • Go over your symptoms and history in plain language
  • Create a clear timeline to share with your doctor
• Prepare for appointments
  • Write down questions you want to ask
  • Practice how to bring up your concerns in a calm but firm way
• Coordinate second opinions
  • Find clinicians or centers that fit your insurance and needs
  • Help request records, imaging, and lab reports
  • Follow up on referrals and scheduling
• Support you emotionally
  • Validate that it is okay to question a diagnosis
  • Stay with you through a confusing process so you are not facing it alone

Debbie and other Understood Care advocates often focus first on helping patients “find their voice.” That means making sure your concerns are heard and that you are not rushed through a decision about your health.

Making Future Misdiagnosis Less Likely

You cannot eliminate risk completely, but you can lower it.

Drawing on guidance from AHRQ, MedlinePlus, the NIA, and the Joint Commission, here are practical steps you can take.

Be an active member of your care team

• Share all your symptoms, even ones that feel embarrassing
• Tell your doctor what you understood from the visit and ask if it is correct
• Ask what the “working diagnosis” is and what else they are considering

Keep copies of key records

Keeping your own folder (paper or digital) with:

• Major test results and imaging reports
• Medication lists
• Hospital discharge summaries

can make it easier to spot errors and to share information when you get a second opinion.

Watch for gaps between visits

Diagnostic errors can happen when abnormal test results are not followed up or referrals are delayed.

You can:

• Ask “What are the next steps and when will I get results?”
• Write down who will call you and by what date
• Contact the office if you do not hear back in the time frame they gave you

When Misdiagnosis Has Already Caused Harm

If you believe you or a loved one has been harmed by misdiagnosis:

1. Seek appropriate medical care right away
   • Address any urgent health problems first.
2. Ask for a clear explanation
   • Request a meeting to review what happened and what the plan is now.
3. Consider involving an advocate
   • Understood Care advocates can help you organize records, prepare questions, and coordinate new appointments.
   • Hospital-based patient relations or patient advocates can also help you navigate internal processes.
4. Look after your emotional health
   • Being misdiagnosed can feel frightening and invalidating.
   • Support from family, community groups, or mental health professionals can be helpful, especially after serious harm.

This article focuses on health and communication, not legal advice. If you are considering legal action, it may be appropriate to consult a qualified attorney who specializes in health care or malpractice in your state.

Frequently Asked Questions About Misdiagnosis and Second Opinions

• ‍How common is medical misdiagnosis?
  Large analyses suggest that diagnostic errors contribute to hundreds of thousands of deaths and cases of permanent disability in the United States every year. The National Academies report that most people will experience at least one diagnostic error at some point in their lives.‍
• What are the most commonly misdiagnosed conditions?
  Research finds that a group sometimes called “the big three” causes most serious harms from misdiagnosis:
  
  • Vascular events, such as stroke and blood clots
  • Infections, such as sepsis or meningitis
  • Cancers, including lung, breast, and colorectal cancer‍
• How do I know if I have been misdiagnosed?
  You cannot always know for sure on your own. However, warning signs include:
  
  • Your symptoms do not match the diagnosis or are not improving
  • Your doctor does not examine you thoroughly or order needed tests
  • Your questions are dismissed or not answered clearly
  • You later learn about abnormal results that were not discussed‍
• Is it rude or disloyal to ask my doctor for a second opinion?
  No. High quality sources, including MedlinePlus and cancer organizations, emphasize that second opinions are common and often encouraged for serious conditions. Many clinicians welcome second opinions, especially for complex diagnoses, because they can confirm or refine the plan.
  You can frame it as:
  
  • “This is a big decision. I want to be sure we are on the right track.”‍
• Will my insurance cover a second opinion?
  Coverage varies by plan. Some insurance plans, including certain Medicare plans, encourage or even require second opinions for specific treatments.
  Before scheduling, you can:
  
  • Call the number on your insurance card
  • Ask whether second opinions are covered for your situation
  • Ask if you need a referral or to stay within a specific network
    If you have Medicare and want help understanding your coverage or finding a second opinion, Understood Care can help you review options and coordinate next steps: https://understoodcare.com/.‍
• How can older adults reduce the risk of misdiagnosis?
  The National Institute on Aging recommends that older adults:
  
  • Prepare a written list of concerns before each visit
  • Bring a trusted family member or caregiver
  • Keep an updated medication list, including over the counter drugs
  • Ask the doctor to repeat the plan and to explain the reasons behind it
    Understood Care advocates are experienced in supporting older adults with complex health needs, helping them prepare for visits, clarify information, and follow through on care plans.‍
• When should I contact an advocate like Understood Care?
  Consider reaching out when:
  
  • You feel lost, rushed, or unheard during visits
  • You suspect a misdiagnosis but are not sure how to bring it up
  • You need help finding a doctor for a second opinion
  • You are juggling multiple conditions, medications, and appointments
    An advocate can help you prepare, speak up, and stay organized so that your concerns are heard and your care is safer and more coordinated.

References

1. Johns Hopkins Medicine. Report highlights public health impact of serious harms from diagnostic error in US. Available at: https://www.hopkinsmedicine.org/news/newsroom/news-releases/2023/07/report-highlights-public-health-impact-of-serious-harms-from-diagnostic-error-in-us Hopkins Medicine
2. Newman-Toker DE, et al. Burden of serious harms from diagnostic error in the USA. BMJ Quality & Safety. Available at: https://qualitysafety.bmj.com/content/33/2/109 BMJ Quality & Safety
3. Agency for Healthcare Research and Quality (AHRQ). Medical Errors. Available at: https://www.ahrq.gov/topics/medical-errors.html AHRQ
4. Agency for Healthcare Research and Quality (AHRQ). Research on Diagnostic Safety and Quality. Available at: https://www.ahrq.gov/diagnostic-safety/research/index.html AHRQ
5. National Academies of Sciences, Engineering, and Medicine. Improving Diagnosis in Health Care. Available at: https://nap.nationalacademies.org/catalog/21794/improving-diagnosis-in-health-care National Academies Press
6. AHRQ Patient Safety Network. Improving Diagnosis in Health Care (PSNet summary). Available at: https://psnet.ahrq.gov/node/44513/psn-pdf PSNet
7. MedlinePlus. Your cancer diagnosis: Do you need a second opinion? Available at: https://medlineplus.gov/ency/patientinstructions/000930.htm MedlinePlus
8. MedlinePlus. Talking With Your Doctor. Available at: https://medlineplus.gov/talkingwithyourdoctor.html MedlinePlus
9. National Institute on Aging. Talking With Your Doctor: A Guide for Older People. Available at: https://order.nia.nih.gov/sites/default/files/2021-06/talking-with-your-doctor.pdf NIH Ordering System
10. Agency for Healthcare Research and Quality (AHRQ). Patient Involvement. Available at: https://www.ahrq.gov/patients-consumers/patient-involvement/index.html AHRQ
11. Agency for Healthcare Research and Quality (AHRQ). Be Prepared To Be Engaged: Intervention. Available at: https://www.ahrq.gov/patient-safety/reports/engage/interventions/prepared.html AHRQ
12. The Joint Commission. Speak Up: About Your Care. Available at: https://www.jointcommission.org/en-us/knowledge-library/for-patients/speak-ups/about-your-care Joint Commission
13. The Joint Commission. Speak Up: For Your Rights. Available at: https://www.jointcommission.org/en-us/knowledge-library/for-patients/speak-ups/for-your-rights Joint Commission

This content is educational and is not a substitute for medical advice. Always consult your healthcare provider for personalized care.