The Patient’s Role in Diagnostic Safety and Excellence: From Passive Reception Toward Co-Design

Patients are the ultimate arbiters of diagnostic excellence. They are the only ones present and focused on getting results through the full diagnostic process beginning when they initiate it. Only they know for certain if the medical process, systems, teamwork, and professional expertise have resulted in an accurate, timely, and effectively communicated diagnosis. And they are the ones who must live with the results of diagnostic errors.

Patients and caregivers who have experienced a diagnostic error can provide a unique perspective. Because they interact with different healthcare providers from different medical specialties in different healthcare settings across the entire healthcare continuum, they can have both a broader and a more specific point of view on what is needed to reduce diagnostic errors.¹,² Yet their input, preferences, goals, and concerns are too often the last to be considered.³,⁴

The issues surrounding diagnostic error, quality, safety, and excellence came into national prominence in 2015. That year, the Institute of Medicine (IOM) issued the seminal report Improving Diagnosis in Healthcare⁵ (the Institute of Medicine is now the National Academy of Medicine, part of the National Academies of Science, Engineering, and Medicine [NASEM]). The IOM report noted the size of the problem and the level of patients’ desire to be properly diagnosed and established that most patients will experience at least one diagnostic error in their lifetime.⁵ 

Patients are concerned about the quality of their diagnoses⁶ and many have experienced diagnostic error personally. Almost one-quarter of Americans have been affected by a diagnostic error experienced personally or by close friends and family.⁷ Approximately 800,000 patients experience significant harm from diagnostic errors every year in the United States.⁸

The diagnostic process (Figure 1) has been a helpful framework for healthcare systems and patients⁴ in identifying gaps in the process that indicate potential diagnostic missteps. It is incomplete because it excludes patients’ work product of evaluating their own health problems and analyzing the when, where, and how to engage with the healthcare system. 

Figure 1. Diagnostic process

Source: Committee on Diagnostic Error in Health Care; Board on Health Care Services; Institute of Medicine; National Academies of Sciences, Engineering, and Medicine; Balogh EP J, Miller BT, Ball JR, eds. Improving Diagnosis in Health Care. Washington, DC: National Academies Press; December 2015; Figure S-1, “The diagnostic process.” https://www.ncbi.nlm.nih.gov/books/NBK338596/. Used with permission of the National Academies Press. 

The committee report concluded with eight recommended goals to improve diagnosis and reduce diagnostic error. Only two of those goals explicitly mention patients and their family members (Figure 2, highlighted) as part of the team. But it is reasonable to assert that each goal would be enriched through meaningful engagement of patients and family members as valued members of the diagnostic team.

Figure 2. Goals for Improving Diagnosis and Reducing Diagnostic Error

Source: Committee on Diagnostic Error in Health Care; Board on Health Care Services; Institute of Medicine; National Academies of Sciences, Engineering, and Medicine; Balogh EP J, Miller BT, Ball JR, eds. Improving Diagnosis in Health Care. Washington, DC: National Academies Press; December 2015; Chapter 9, page 358. https://www.ncbi.nlm.nih.gov/books/NBK338596/. Used with permission of the National Academies Press.

Limited attention to the patient’s role in diagnostic safety is perpetuated in how we identify diagnostic errors. Identification and characterization of diagnostic errors have predominantly used a variety of sources, including:

• Retrospective reviews of medical records (including clinical outcomes such as diagnostic delay and returns to the emergency department).
• Claims data.
• Autopsy studies.
• Hospital staff voluntary reporting systems.
• Patient satisfaction surveys.
• Emerging techniques. to identify and mitigate diagnostic errors using triggers in the medical record. 

To date, few approaches to diagnostic error measurement or research have made the patient’s experiences, knowledge, and input a priority, weighing their expertise as equal to that of the doctor or the health system. 

Diagnosis is a complex and multifaceted process that relies on clarity of communication from the patient and family and an actively listening clinical team to get it right. As noted in a recent AHRQ report, studies show that diagnostic errors result from a confluence of factors, including:

• Communication challenges.
• Inadequate history taking and physical examinations.
• Issues of clinical cognition and implicit biases.

All these factors occur within a fragmented and difficult to navigate healthcare system.⁹

Importantly, many of these contributing factors stem from the same problem, not fully listening to the patient’s (or family members’) input, goals, and concerns. Sir William Osler, 19th-century physician and a cofounder of Johns Hopkins Hospital, said it first: “Listen to your patient; he is telling you the diagnosis.”¹⁰ 

Sadly, health system pressures have truncated the time available for a primary care visit. This lack of time has reduced the opportunity for a thorough examination and complete patient history. In addition, it has led to amplified reliance on expensive diagnostic tests and deprioritized engagement with the patient and family, including communication of the working diagnosis, diagnostic uncertainty, and opportunities for shared decision making.¹¹ The production pressures faced by clinicians and patients have slowed the progress of patient involvement in their own healthcare decisions greatly. It is difficult to partner with your medical team if they neither listen nor consult with you.

In our experience, patients of all levels of experience and education are eager to partner with their medical teams. Perhaps counterintuitively, those who have experienced diagnostic limbo, had long or difficult diagnostic journeys, and even those who may have felt as if some providers were dismissive of their symptoms or concerns, are often activated to get involved at a deeper level. This feeling is seen especially in patients with conditions that are difficult to diagnose or rare.