Efforts to define terms to advance understanding are incomplete without including the perspective of patients, but we cannot learn from their experiences if we do not know how to ask.43 The terms described throughout this issue brief may have little to no meaning to patients.
We have learned a lot from pioneering work on patient surveys and interviews.44-47 Rather than speak of their diagnosis or diagnostic quality, patients may relate that they received an adequate or reasonable explanation of their medical condition that made sense to them and subsequently advanced their healing. When things go wrong, they may speak not of errors, but rather mistakes, problems, mishaps, misunderstandings, and miscommunication.44
Patients and caregivers often describe protracted diagnostic processes and the emotional toll of uncertainty related to diagnostic delays.45 Their lived experiences add essential depth and complexity to our understanding of their diagnoses and aspects of their diagnostic journey that may not always be visible from a clinical or research perspective.
Communication breakdowns may be characterized by patients as experiences where they felt dismissed, ignored, disrespected, or not listened to despite concerns about their diagnosis. Some descriptions of patient experiences may be proxy for diagnostic excellence. For example, patients who feel that providers took time to listen and understand their concerns likely have an opportunity to share important details that inform diagnostic possibilities.
Investigators have learned that patient experience is best understood using narrative and open-ended questions to provide context and a full description of their diagnostic journey, although such methods are difficult to generalize to large numbers of patient encounters.46,47 Ongoing work to determine how best to integrate patient feedback into diagnostic improvement efforts is needed, although we are beginning to better understand how patients think and communicate about their diagnostic quality.
