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Policymakers and clinician-leaders are increasingly looking to patient experience to improve health system performance.^1,2 Quantifiable scores derived from closed-ended survey questions have been linked to financial incentives for clinicians in the United States and other countries.³ Narrative accounts have emerged as a valued source of actionable feedback for quality improvement in a variety of treatment settings.^4,5,6

Despite improvements in some metrics of patient safety over the past decade,⁷ learning from patient reports about safety threats has lagged behind.⁸ This lag reflects, in part, some legitimate concerns that patients and their families:

• Might be unaware of certain types of errors.⁹
• Might vary in their willingness to speak up about medical mishaps, inducing disparities in error reporting.¹⁰
• Might erroneously presume errors occurred if treatment outcomes fell short of their expectations.¹¹

Therefore, systematic elicitation of patients’ experiences related to safety events remains limited in scope and largely untested for reliability, despite some promising one-off innovations in recent years.^{12,13,14,15,16,17}

Investment in learning from patients’ experiences about diagnostic errors is even more limited.¹⁸ As one paper about diagnostic problems characterized matters:

…while patients’ and families’ experiences are gradually being recognized as sources of valuable information that can help improve safety and quality, there are no current policy or practice initiatives to supplement patient safety data using patient reported experience and patient information and feedback.¹⁹

A 2020 review of measurement methods for diagnostic errors characterized “solicited reports from patients” as still in the exploratory stage methodologically, with limited availability of patient-reported information about diagnostic issues.²⁰ The National Quality Forum (NQF) identified no newly published measures based on patient experiences with diagnostic errors between 2017 and 2020, a time when several dozen new measures from other sources emerged in the literature.^21,22

Patients and families offer a unique source for understanding a variety of diagnostic problems, such as communication breakdowns between clinicians and patients, a common aspect of diagnostic errors.^23,24 The patient/family perspective is equally crucial for:

• Identifying diagnostic breakdowns during transitions among clinical settings.^19,25
• Assessing the impact of adverse events on the health and well-being of patients.²⁶
• Understanding the impact of diagnostic problems on the subsequent attitudes and behaviors of patients and families.^23,27

Failing to assess patient and family perspectives undercounts diagnostic harms and makes it harder to constructively address a substantial portion of diagnostic shortfalls.²⁸

To learn most effectively from patient experiences with the diagnostic process requires sensitivity to how diagnostic mishaps feel to those who experience them and to how they themselves describe their experiences, cast in terms familiar to those recounting them. Learning from patient experience also calls for a lasting commitment to parlay insights into action that can mitigate future resulting harms, since remediation efforts in response to patient feedback will induce more subsequent reporting of problems by patients and families.

Throughout this brief, we refer to adverse diagnostic events as “diagnostic mishaps,” “diagnostic errors,” “diagnostic problems,” “diagnostic concerns,” and “diagnostic shortfalls.” The variety of terms might seem like a source of imprecision, especially when contrasted with approaches identifying diagnostic errors from clinical records or incidence reports based on precise clinical terms. But patients and families do not describe adverse diagnostic events with such uniformity. The lexicon in this brief mirrors the variability embodied in narratives themselves, emphasizing that learning from reported experience requires addressing survey respondents on their own terms, using their own words.

In the sections that follow, we first synthesize what is known about patient/family reporting of safety events generally and diagnostic errors specifically. We next identify alternative strategies for measuring patient experience, strategies that can be categorized (in accordance with a recent NQF report) as “measure concepts.” We conclude by identifying questions and research opportunities related to how best to implement these new approaches to learning from and responding to patient and family perspectives on the diagnostic process.