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

Although the literature has established that patients can identify and reliably report on a range of adverse medical events, rigorous methods are needed to elicit patient experiences in ways that best enhance learning and provide constructive responses. Patient perspectives offer unique information about how diagnosis-related events alter patients’ trajectories through the healthcare system and their expectations for clinicians.

This brief, the second of two volumes, considers:

1. How to most effectively elicit representative, indepth narrative accounts of diagnosis-related events.
2. How patient feedback about the diagnostic process and its outcomes can most effectively be used to learn from patient and family experience.
3. What questions about the elicitation of patients’ diagnostic experience remain in need of additional research.

Key insights about learning from patient experience to address diagnostic problems include:

1. The extent of actionable feedback embedded in narrative accounts can be considerably enhanced by careful attention to elicitation techniques (e.g., question wording and sequencing).
2. To assess the full implications of diagnostic mishaps for patients and families, it is essential to elicit their experiences from both the mishap and its aftermath. Because substantial aftereffects can persist for many years, elicitation techniques must inquire about the impact of adverse events that occurred as much as 5 years in the past.
3. To ensure that a large number of patient experiences related to diagnosis are collected, it is important to assign responsibility for eliciting accounts in ways compatible with how patients and families respond after an adverse diagnostic event. Experiences that have short-term actionability are best elicited by incorporating questions about diagnostic experiences into existing patient experience surveys fielded by health plans, hospitals, long-term care facilities, and other clinicians. Identifying practices that affect the persistence of adverse effects long after a perceived diagnostic mishap or that cross organizational boundaries require population-based surveys designed for retrospective inquiry about past diagnostic events.
4. To encourage a healthcare system that can effectively learn from and respond to patient and family perspectives regarding diagnostic problems, a dual-channel approach is called for. Responsibility for eliciting patient experiences should be divided in a strategic manner between:
   1. Healthcare providers responsible for rectifying diagnostic shortfalls related to clinician-patient interactions.
   2. Agencies responsible for promoting structural reforms to promote safety for the healthcare system as a whole.