Let patients help with diagnosis

Introduction

Patient-centered medicine is becoming a meme. Most health systems want to be perceived as providing patient-centric care. Such an approach is supposed to reduce medical errors and improve outcomes and patient satisfaction [1]. According to the Institute of Medicine, patient-centered care is:

“health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they require to make decisions and participate in their own care” [2].

As lofty as these goals seem, there is one area that has been largely left out of the initiative for patient and family involvement, i.e., diagnosis. Doctors think of the process of diagnosis as uniquely theirs. After all, they have spent years learning how to conduct physical exams, elicit patient histories and interpret signs, symptoms and laboratory test results. The patient is the passive puzzle, supplying answers to a physician’s insightful questions. The doctor is the puzzle master who assembles all the pieces into a meaningful pattern.

The trouble with this paradigm is that it doesn’t work very well. No one really knows how common diagnostic errors are in hospitals, clinics, nursing homes or office settings. That’s because misdiagnosis has been a third-rail issue for decades. Even patient safety experts have tread cautiously in this arena. Writing in the Journal of the American Medical Association in 1998, George Lundberg, MD, (then editor-in-chief of the Journal) noted that “diagnostic discordance” had remained around 40% for decades. He was referring to the phenomenon whereby the diagnosis prior to death differed from the cause of death revealed through autopsy [3]. Dr. Lundberg’s conclusion: despite 60 years there had been “no improvement!”

Patient safety experts today are more conservative in their assessment of misdiagnoses. Discrepancies between clinical diagnosis and autopsy results seem to have declined somewhat with time, but comparisons still show major diagnostic errors may occur at rates ranging from 8% to 24% [4]. That has led to the oft-cited estimate that anywhere from 40,000 to 80,000 people die annually in US hospitals because of misdiagnoses [5]. If one were to include misdiagnosis-related non-lethal injury and/or disability, the number of patients suffering harm from misdiagnosis may be estimated at more than 150,000 [6]. Little research into diagnostic error has been conducted in outpatient settings such as nursing homes, prisons, community clinics or private office visits. A review utilizing several different research techniques for measuring diagnostic errors, including some primary care settings, found that rates may be as high as 25% [7]. While this research has focused on harm to patients, the fact that diagnostic errors sometimes result in malpractice claims suggests that physicians would also benefit from improvements in diagnostic accuracy [8].

Sources of diagnostic error

Why are there so many mistakes made in diagnosis? To some extent, it may be because of the cognitive complexity of the task [6]. A careful study of diagnostic errors in primary care, however, showed that many involved common conditions [9]. Time pressure may contribute to misdiagnosis, and physician overconfidence seems to be another factor. Studies have shown that diagnostic accuracy and physician confidence do not necessarily match [10, 11]. When doctors have more confidence in their diagnosis than is warranted, they “might not request the required additional resources to facilitate diagnosis when they most need it” [12]. While those additional resources might in some cases be consultation with another physician, in some cases patients may be able to offer resources such as details about the symptoms or the history that could be useful. An overconfident diagnostician who doesn’t realize that the picture is incomplete may not invite a patient to share his or her own knowledge of the situation.

How can patients help with their diagnosis?

Instead of passively answering questions posed by a health professional, many patients want to be actively involved in the process. Increasingly, e-patients (individuals who are equipped, enabled, empowered and engaged in their health and health care decisions) are sophisticated at searching the web for relevant information, interacting with other engaged and empowered patients and able to make informed decisions about their own health [13]. In the participatory medicine movement, “networked patients shift from being mere passengers to responsible drivers of their health…[and] providers encourage and value them as full partners” [14].

Patients frequently consult “Dr. Google” and other online resources before they even make a doctor’s appointment. The result may be either good or bad; sometimes they may be fortunate enough to match symptoms to the proper diagnosis. Other times they may get it completely wrong or scare themselves unnecessarily [15]. Physicians will have greater success using this generalized search tool, because they will be able to quickly rule out the great majority of the less-relevant suggestions that are made, but physicians would be much better served by using diagnosis generators that have been specifically designed for the task. These outperform Google appreciably in both sensitivity (including the correct diagnosis) and specificity (not including so many irrelevant suggestions) [16].

Nonetheless, patients have both the time and motivation to use computer-assisted diagnostic tools, and it may be in their best interests to do so. A program that offered patients a user-friendly interface would probably be widely used. Symptom checkers like those found at websites such as MayoClinic.com or WebMD or in programs such as Isabel (patient version) may offer patients and their families a partial list of potential diagnoses to share with the healthcare provider. This way, there is a more complete differential diagnosis at the outset, and patients may ask providers if they have ruled out a particularly worrisome possibility. Reviewing different possibilities would also help avoid one of the most common types of diagnostic error, where physicians (or patients) settle immediately on a single consideration without considering alternatives.

Another thing patients and families can do to help is prepare a short summary (one page) of symptoms and a bulleted time line of when they appeared [17]. The doctor should ask what the patient thinks might be wrong and why. The patient’s diagnosis might be completely wrong, but it might also be informative. In addition, the patient is more likely to feel that his concerns and suspicions are valued.

Patients can help further by asking if any of their symptoms do not fit the proposed diagnosis. This may help the provider take a few extra minutes to review the differential diagnosis more thoroughly. Health care professionals should welcome the opportunity for reflection that such a question affords.

Finally, patients should be told about the expected course of recovery. They must know how soon to get back in touch if symptoms don’t resolve or if they get worse. They need to ask when and how test results will be delivered, and have a plan for retrieving test results if they don’t hear from the health professional who ordered the test [18]. A clear system for communicating directly with the person who made the diagnosis is crucial, especially if the recovery doesn’t follow the expected time frame. When this does not happen, doctors do not get essential feedback about diagnostic errors that would help them improve their future performance.

To let patients help, some doctors will need to adopt new ways of relating to patients. Shared decision making is usually thought to apply primarily to treatment options. In the new paradigm of participatory medicine, however, doctors and patients need to work together from the start to reduce the epidemic of diagnostic errors.