Patient Experience as a Source for Understanding the Origins, Impact, and Remediation of Diagnostic Errors

Policymakers and clinician-leaders are increasingly looking to patient experience to improve health system performance.^1,2 The first installment in this two-volume issue brief described the rationale for learning from patients and their families about the diagnostic process. It also discussed recognizing the persisting impact of diagnostic mishaps on patient health, healthcare utilization, trust in medical care, and general well-being. The first volume also documented gaps in existing methods for rigorously collecting and assessing these diagnostic experiences.^3,4,5,6

Foundational research on rigorous elicitation of patient experience began 50 years ago. It established two core principles that continue to guide the field:

1. Only some aspects of healthcare are observable from patients’ perspectives.
2. Observations will not necessarily be reported on surveys or other mechanisms for collecting experiential data.³

Rigor requires attending to these constraints. But it also calls for developing methods that can encourage patients (or their surrogates) to more thoughtfully recount their experiences and to help them report those experiences in the most complete, reliable, and representative way.⁷

The first generation of patient experience surveys, relying exclusively on closed-ended questions, did not ask about patient safety, because safety events were less reliably observed by patients than other aspects of healthcare, such as accessibility of care.³ But over the past decade, researchers have used open-ended questions to better understand patient experience.

It has become clear from the responses that patients and their families may not always understand every clinical detail, but they can still identify relatively nuanced events and processes that affect quality or threaten safety.^3,8,9,10,11 For example, patients and families often have a more complete view than clinicians do about diagnostic experiences during transitions of care across settings, a well-known risk zone for safety.¹²

Attending to the second principle of rigorous elicitation calls for wording and sequencing survey questions in ways that encourage patients to convey full and complete accounts.^13,14 Medical encounters are often complex and can involve a sequence of interactions with multiple clinicians. Thus, surveys must be structured to allow respondents to recount these interactions in an order that matches their experiences.

Survey questions should help patients reconstruct when and what they knew at different stages in the diagnostic process. Rigor also calls for using language that accords with the diverse ways patients (or their surrogates) think about and describe diagnostic encounters.

In the sections that follow, we first synthesize what is known about effectively eliciting patient and family reported experiences related to healthcare generally. We then extend this information to learning from safety events and diagnostic errors specifically. We summarize the ways narrative elicitation about the diagnostic process can be enhanced, while noting the limits of reliable reporting on the part of patients and their families. We conclude by identifying some promising opportunities for future research on rigorous narrative elicitation for diagnostic safety.