Patient Stories

Narratives Describe Missed Opportunities to Avoid Diagnostic Error

Recent efforts to understand and mitigate diagnostic error fully acknowledge the importance of patients and families as sources of information and feedback. While recognition is progress, patients and families are still not routinely consulted in diagnostic error research or in practice for the information that they alone can offer.

A study published in Health Affairs represents a step forward in learning directly from patients and families. Authors of the study used a database created by the nonprofit Empowered Patient Coalition, which contains reports submitted voluntarily by patients, family members and caregivers about adverse medical events. The survey is available on the Coalition’s website to anyone who wants to report and is easy to access through SurveyMonkey.

Researchers queried the database for problems related to diagnosis: delay; misdiagnosis; wrong test ordered; test results lost, misplaced or disregarded; and errors in pathology or laboratory. Reports from January 2010 to February 2016 were included in the search, which yielded 465 relevant reports and 184 narratives submitted equally by patients and family members. The narratives, 79.9 percent of which report on hospital-based experiences, were examined for recurring themes and patterns.

Missed Opportunities to Learn From Patients and Families

Despite wide acknowledgement in the improvement community of the patient’s crucial role in diagnosis, the study found that most of the narratives describe missed opportunities to learn from patients and family members. The study reports examples of people who were disenfranchised by clinicians – ignored, dismissed or even deceived – and who turned out to have had relevant, valuable information that could have helped avoid a gap or error in care.

The study reviews patient stories in detail, organized by four themes: ignoring patients’ knowledge, disrespecting patients, failing to communicate, and engaging in manipulation or deception. In addition to patient harm, the reports illustrate the harm done to family members who know they could have helped had they been able to overcome the barriers they encountered. One woman expressed frustration that she had failed to protect her mother from harm:

[I] had worked in a major teaching hospital for years and thought I could manage her care, and make sure she was well taken care of.… I found I was unable to do so, since I was continually ignored.… I failed her. (p 1823)

The study’s reports of faulty communication are especially striking when considered against recent, widely reported recommendations from the National Academy of Medicine. In its landmark report, Improving Diagnosis in Health Care, the NAM calls on health care professionals and organizations to

…embrace patients and their families as essential partners in the diagnostic process, with valuable contributions that can improve diagnosis and avert diagnostic errors.(p 166)

Communication with patients also features prominently in the NAM’s new definition of diagnostic error. Good diagnosis consists of two parts: 1) establishing an accurate explanation for the patient’s health problem without delay and 2) communicating that explanation to the patient(emphasis added).It is not enough to make the diagnosis; a correct diagnosis that is not communicated effectively to the patient counts as a diagnostic error.

The Health Affairsauthors point out that diagnostic error research has primarily examined the role of system factors and clinician performance (cognitive and procedural), rarely the role of interactions with patients and families. Their study and the Empowered Patient Coalition’s database are important contributions to understanding better the harm done when patients and families are denied an active role as diagnostic team members. Diagnosis is a relatively new frontier in patient-centered care, as well as in patient safety. The new study demonstrates how much information and knowledge is wasted when those who have the most at stake and who offer a unique perspective are excluded from participating.

“Learning From Patients’ Experiences Related to Diagnostic Errors Is Essential for Progress in Patient Safety” appears in an issue of Health Affairs dedicated to patient safety.


Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

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