Improve Diagnoses – What Patients Can Do offers suggestions for patients to ensure that they are not misdiagnosed.

Introduction

Consider these statistics:

Everyone is likely to experience at least one diagnostic error during his or her lifetime.[i]
Every nine minutes someone in a U.S. hospital dies due to a medical diagnosis that was wrong or delayed.[ii]
Diagnostic errors impact over 12 million Americans and for four million patients, the errors are deadly.[iv]
The U.S. has higher rates of medical errors than comparable countries.
Medical errors are the third leading cause of death after heart disease and cancer and 250,000 people in the U.S. die every year from medical errors.

These sobering facts, demand that patients are no longer passive observers in their healthcare, but rather active participants, who partner with their clinicians to help improve their diagnosis. And while there are many initiatives to help physicians reduce diagnostic errors, there is relatively little to help the patient.

Diagnostic error is defined as “the failure to (a) establish an accurate and timely explanation of the patient’s health problem(s) or (b) communicate that explanation to the patient.”[v]

Background

Beginning in medical school, doctors are taught to create a “differential diagnosis” where they learn to consider a set of potential causes for specific ailments, both common and rare possibilities. Oftentimes, doctors may create smaller lists of potential diagnoses due to many factors. These factors could include their demanding schedules, patient interactions with the same symptoms and diseases, etc. This can lead to physicians placing patients’ complaints into common disease categories without really considering what else it could be. They limit their differential diagnosis to just a few possibilities. Stories abound from patients who have been misdiagnosed with an incorrect ailment for many years. Oftentimes, this is because the doctor failed to expand the differential diagnosis and include all the likely possibilities.

As researchers study diagnostic failures in the U.S. health system, there are indicators that a misdiagnosis has occurred. One predictor is that the patient seeks a second opinion, perhaps a third or fourth opinion searching for the cause of the ailment. Unfortunately, there is little or no communication between the patient and the previous physicians to help them learn from their misdiagnosis errors. To further diagnostic excellence, patients should continue to communicate with previous doctors when they have been correctly diagnosed.

Patient Action

If you’ve been misdiagnosed by one physician and then correctly diagnosed by another doctor, let the other clinician know about the diagnostic error, so s/he can learn from the mistake.

Education

One of the most important contributions that patients can make to ensure a correct diagnosis is to educate themselves.

Internet

There are 20,000 to 30,000 diseases[vi] and over 10,000 medications.[vii] There is no way that a clinician can be knowledgeable about all diseases and drug interactions. Coupled with increasing pressure from health systems, physicians rarely have the time to do the appropriate research that will improve diagnoses. That’s were patients come in. The internet is a great resource for patients to search the clinical literature for studies and articles to help their physicians. Scholar.Google.com or similar search sites are a good place to start.

Patient Action

Start with Scholar.Google.com or other reliable sources to research publications about your symptoms.

Another great resource is Isabel launched by Jason Maude after his three-year old daughter, Isabel, nearly died from a tragic misdiagnosis. The differential diagnosis tool is free for patients and offers a subscription for medical professionals. The platform, which includes symptoms for 6,000 ailments,[viii] is easy to use by filling out a form that then provides a list of possible diagnoses. https://symptomchecker.isabelhealthcare.com/

Patient Action

Use https://symptomchecker.isabelhealthcare.com/ or similar diagnoses listing sites when you’re searching for a diagnosis that’s not straight forward. The results can provide possibilities for your physician.

Clinical Notes

The doctor’s progress notes are part of the patient’s electronic medical record. Physicians write the details about the patient’s problems (also known as history or Subjective), what they see during their examination and testing (physical or Objective), what they think is wrong with the patient (Assessment) and what they plan to do about it (Plan). The abbreviation “SOAP Note” is also used. In an increasing number of health systems, patients can view their physicians’ notes online after their visit. These notes are frequently referred to as “OpenNotes” or other names. Accessing these notes is critical in ensuring the correct information is contained in the health record. It’s important that patients review the notes from their clinician after every encounter. If mistakes are uncovered, patients should contact the physician about the correction that’s needed. Patients may find the notes difficult to understand. But they should research everything, so that they understand every word.

Patient Action

Review your medical record after every visit with your clinician. Send a message about any mistakes and then check to ensure that the mistakes have been corrected. Make sure you understand every word in the note. If necessary, Google those words which you don’t know. If your doctor is not sharing notes with you, ask about the reason. OpenNotes makes it easier for you to understand your care, follow your physician’s advice and find possible errors. Not all doctors know about OpenNotes programs. Your question might motivate them to adopt OpenNotes.

Laboratory Reports

Health systems may allow patients to view their laboratory reports. Occasionally, physicians may not have the time to review lab results. Or they may not catch important abnormal test results. While not every test flagged as “abnormal” is serious (most are just a little out of the normal range and are not important), some are very serious. Patients should review their lab reports as soon as they are available. Then follow-up with every test to ensure that the results are within appropriate ranges. This is especially important for results, such as those indicating possible cancer or highly abnormal tests of liver, kidneys, blood cells, etc. Then it doesn’t hurt to check the results a second time. The patient should ask questions if unsure. The Centers for Medicare & Medicaid Services (CMS) and most state laws allow patients to obtain their lab reports directly from the lab. Plus, health systems may allow patients to view their laboratory reports.

Patient Action

Learn to read your test reports and understand what they mean. If you discover a test result that is outside the acceptable parameters, then contact your doctor. Continue to follow-up until you get results.

Physician Engagement

Select the Physician

Patients often select physicians randomly or based on what others say. However, patients may not research physicians’ experience with rare disease diagnoses, board certifications or or information in the Federation of State Medical Boards, which links to each state medical board. . These sources provide excellent information about their potential doctors’ qualifications. In fact, patients may spend more time researching a car purchase, than they do with their critical healthcare partners.

Patient Action

Research your clinicians vigorously. Search the many internet websites that post patients’ ratings and rankings of their clinicians. Review board credentials and the National Practitioner Data Bank. Don’t blindly select your doctor.

Prepare for the Visit

Just as the physician should read the patient’s record before the exam, the patient should prepare for the visit, as well. The Institute for Healthcare Improvement recommends that patients should prepare three questions for the physician that the patient wants answered. Most patients arrive at their exams with more than one complaint.

The Society to Improve Diagnostic Medicine (SIDM) has a comprehensive tool kit to help patients prepare for the visit with their physician. The Patient’s Toolkit for Diagnosis can be found at: https://www.improvediagnosis.org/patients-toolkit/

Patient Action

Use tool kits and guides to prepare for physician engagement.

One important component in diagnostic excellence is the History of Present Illness (HPI), which is taught in medical schools. This is the course of the illness, based on patient information, labs, prior illness, etc. Physician time constraints may limit how much HPI the clinician is willing to ask about and discuss. However, a thorough chronological history in a timeline oftentimes, holds the key to the diagnosis. The HPI should be used by all physicians, but patients should prepare their own written document about the background of their complaint. This will aid the clinician in the diagnosis.

Patient Action

Write a brief chronological history of your medical complaint and email it to your physician prior to the appointment. If that’s not possible, bring the document with you. If you haven’t created the HPI, then expect your doctor to ask you to start at the beginning in your description. And if that doesn’t happen, say to your physician, “Why don’t I start at the beginning?” Keep ongoing and accurate records, by date, of your healthcare journey.

Research reflects that doctors interrupt patients telling their stories in about 20 seconds. Hopefully, this well-known statistic discourages physicians from interruptions. When patients are interrupted, they should ask to finish their story. William Osler, referred to as the father of modern medicine, said in the 1800s that patients will tell the doctor their diagnosis in their story.[ix]

Patient Action

If interrupted by your physician before your story is completed, ask your doctor if you can finish the narrative.

The Agenda

Physicians should have learned in medical school about how to set the agenda with the patient and then negotiate the items on the agenda. However, many doctors start with the question, “Why are you here today?” which may or may not be the patient’s chief complaint. There may be other complaints, as well. Patients should prepare a list of everything, which they want to discuss with the most important at the top and then descending in importance. This is useful in case the clinician doesn’t have enough time to address every issue. Discussions about other issues may need to be postponed until the next exam.

Patient Action

Prepare a list of complaints or questions in descending order of importance and open the discussion with your physician with your list. “Here is what I’d like to discuss today.”

The Diagnosis

Most of the time, patients receive the correct diagnosis, but when that doesn’t happen, patients should ask the doctor for additional possible diagnoses.

Patient Action

When you’re not satisfied with the diagnosis, ask “What else could this be?”

If the doctor is unsure of the diagnosis, patients should find experts who can help them by searching the literature and/or finding doctors who deal with “mystery” diseases.

Patient Action

Rather than going from physician to physician seeking a diagnosis, search through Google Scholar, for organizations or researchers who have studied your diagnosis. They may be able to tell you if it’s a correct diagnosis. Also, search for physicians who examine patients with “mystery” conditions. They are detectives of human diseases.

Partnership

A partnership between patient and physician is critical. Certain clinicians don’t want patients interfering in their medical arena. However, there are many instances where information, which the patient has shared with the physician, has been impactful. Clinicians should welcome the partnerships. Patients should seek out physicians where collaboration is welcomed.

Patient Action

Work with clinicians who welcome collaboration and partnership. If your physician is not a partner, then find one who is interested in your input, takes time to answer your questions and works with you.

Speak Up

Not only is it important that other clinicians speak up, but patients too should speak their minds, as well. Patients recognize the imbalance of power and may be reluctant to speak up. Yet, patients know their body better than anyone and should learn to voice their opinions. The medical language is filled with jargon. Patients should make sure that they understand every word that comes out of their doctors’ mouths.

Unfortunately, other clinicians, such as nurses, physician assistants, may not be accustomed to their partnership role with the physician. As the doctor is speaking, patients should look at other clinicians in the room to see if their facial expressions and body language indicate that they agree.

Patient Action

Speak up if you have questions or if you don’t agree with your doctor or if you don’t understand the words. Help teach clinicians that they need to speak in understandable language. Watch the reaction of other clinicians to see if they agree with the physician. If you notice, dissention, talk to the person later and find out what’s on their mind.

“You’re Too Old, You’re Too Young”

Oftentimes, the differential diagnosis technique eliminates findings that might be correct. Patients hear that they are too young to have a heart attack, too old to have appendicitis, too far from the geographic area where is the disease is common, etc. Patients should listen when physicians mention diagnoses variables such as age, location, gender, etc. The patient may be outside the normal parameters of a useful diagnosis.

Patient Action

If you hear that you’re not the usual patient to have a certain problem, research the statistics and present them to your doctor. Ask if you could be a patient who is not typical but still has the disease. This may help the physician consider rare types of diseases that could explain your diagnosis.

Follow-up, Follow-up, Follow-up

Enough can’t be said about the necessity for patients to continually and consistently follow-up on everything including test results, appointments to be scheduled, referrals to be made, etc.

Patient Action

Follow-up on everything to ensure that nothing falls through the cracks. Check the clinical notes in your follow-up. Talk to your doctor about any delays that you experience.

Care Coordination

Patients expect that their care team will be informed about any new developments, such as test results. Unfortunately, the team isn’t always aware of everything. Patients need to coordinate their care by communicating with the entire team.

Patient Action

Make sure that everyone on your team knows everything about the latest development regarding your care.

Healthcare Service Options

Patients may find that a visit to their doctor is time consuming and tedious. Most physicians interact with patients in a variety of ways including email, telephone and video appointments. Patients should use all forms of physician interaction, rather than delaying appointments, which is a contributing factor to misdiagnoses.

Patient Action

If you think you need to talk with your doctor, don’t delay the appointment. Consider using email, telephone or video visits, if available, rather than seeing your doctor in person, if you can’t get to the doctor in a timely manner.

Advocacy

With so many diseases, patients need to become their own advocates and manage their healthcare. In certain cases, patients may need help in managing their healthcare. A well-informed friend or relative might help. Professional healthcare advocates have become a cottage industry with educational programs awarding certificates to graduates. Oftentimes, health systems employ patient liaisons to work with patients who are not satisfied with their care or diagnosis.

Patient Action

If you can’t manage your care, ask a friend or relative to help. Or consider hiring a professional patient advocate or contact your health system’s patient liaison.

It’s the patient’s responsibility to be informed, to research and to communicate as a partner in their care. Physicians are doing their part to reduce diagnostic errors, and now it’s time for patients to join the movement to enhance diagnostic excellence.

Patient Action

Don’t leave your healthcare to your clinicians. Partner with your doctor and join the team to manage your care as a strong advocate. If your physician doesn’t welcome you on the team and embrace your input, then find one who will. Healthcare is a team sport!

Researched and written by Barbara Lewis, MBA, and Kerry Litman, MD

Thank you for the input and support from Mimi Hugh MA, MPH; Mike Kanter, MD; and Bill Strull, MD, at Kaiser Permanente and patient advocates Susie Becken, Barry McKeown, Bobbi Reed, Dan Berg, Helen Haskell, John James, Kimberly Rogers, Steven Coffee and Vonda Vaden Bates, who either experienced a delayed or misdiagnosis themselves or with a loved one, four of whom died as a result. My heartfelt thanks.

[i] Laposata, M. and Cohen, M.B., 2016. It’s our turn: Implications for pathology from the Institute of Medicine’s Report on Diagnostic Error.

[ii] ACT for Better Diagnosis, retrieved 11/19/19 https://betterdiagnosis.org/diagnosis/

[iii] Graedon, T. and Graedon, J., 2014. Let patients help with diagnosis. Diagnosis, 1(1), pp.49-51.

[iv] Singh, H., Meyer, A.N. and Thomas, E.J., 2014. The frequency of diagnostic errors in outpatient care: estimations from three large observational studies involving US adult populations. BMJ Qual Saf, 23(9), pp.727-731.

[v] Ball, J.R. and Balogh, E., 2016. Improving diagnosis in health care: highlights of a report from the national academies of sciences, engineering, and medicine. Annals of internal medicine, 164(1), pp.59-61.

[vi] Wynants, M. ed., 2009. In Sickness and in Health: The Future of Medicine: Added Value & Global Access. ASP/VUBPRESS/UPA.

[vii] Chong, C.R. and Sullivan Jr, D.J., 2007. New uses for old drugs. Nature, 448(7154), p.645.

[viii] Isabelhealthcare.com, retrieved 11/19/19

[ix] Walker, H.K., 1990. The origins of the history and physical examination. In Clinical Methods: The History, Physical, and Laboratory Examinations. 3rd edition. Butterworths.