The small body of research on patient-reported experiences involving safety only sporadically touches on diagnostic concerns but nonetheless offers insights that can guide more concerted attention to diagnostic issues in the future.
Perceptions of Safety and Medical Errors from Patients’ Perspectives
Four past findings have relevance for future research in diagnostic safety:
- Patient Experiences Must Sometimes Be Reported by Others: Accounts of patient experience related to safety are often (40%-60% of cases) reported by family and friends.i This finding holds whether accounts are collected through complaint/grievance systems,5,14,29 population-based surveys,22,30 or other means.19,31 Accounts from family and other caregivers are vital when patients are deceased or too debilitated or discouraged by their experiences to report. Moreover, caregiver accounts offer distinct perspectives on factors influencing safety.32
- Patient Perspectives on Safety Differ From Clinicians’ Assessments: Based on the broader literature on patient safety, clinicians typically focus on errors, that is, what they would perceive as preventable and harmful events. By contrast, the perceived mishaps patients and families report are more consistent with notions of adverse events, since they often cannot observe or reliably assess all aspects of the likelihood of preventability.9,11,33,34 For example, in a large-scale study of patient safety experiences during hospitalizations in the United Kingdom, about one-third of the “incidents” that triggered patients’ concerns about safety were judged by clinical reviewers as preventable.16
- Patient Accounts Augment Other Forms of Safety Reporting: Reports from patients and families are vital complements to other methods of detecting adverse events.35 A study of pediatric hospitalizations in the United States documented that family reports identified five times as many errors and three times as many other adverse events as incident reports clinicians filed.13 The study of adult hospitalizations in the United Kingdom cited above found that two-thirds of the errors identified from patient narratives were not captured by the hospital’s other safety reporting systems.16
- Patient Perspectives Reveal Actionable Information: Narrative accounts from patients and families often have sufficient concreteness to identify actionable steps that might have prevented the adverse event or mitigated its harm.5,12 Although patient accounts do not always convey a complete picture of the sources of heightened safety risk, they can provide new clues into events that gave rise to the adverse event or mediated its impact.16,26,36
Perceived Promise of Reported Patient Experience for Addressing Diagnostic Shortfalls
Prior findings make clear the potential for learning about safety concerns from patients and families. That promise holds similar appeal for addressing diagnostic failures.9 As one paper concluded, “Insights from patients can be valuable in gaining a comprehensive understanding of diagnostic errors and informing strategies for mitigation.”19
This potential is greatest when patients and families have a unique perspective or capacity to interpret events that induced the mishap or exacerbated its harms. The NQF’s recent report on diagnostic quality and safety provided examples of such circumstances:
Gathering information directly from a patient, family or caregiver may be the most optimal way to measure communication quality and avoid possible diagnostic errors in a fragmented system… when only the patient is aware of miscommunication across clinicians and settings.21
Healthcare organizations and clinicians should engage patients who have undergone diagnostic odysseys to evaluate their experiences with the diagnostic process. Currently, there is a paucity of measures that exist to capture the extent or effect of diagnostic odysseys on patients. 21
The domains of experience identified in the NQF report are aspirational, aspects of care for which patient experiences might be expected to provide crucial insights. But it offered no evidence that patients and families would actually report on these matters. Our own (as yet unpublished) research collecting diagnostic narratives suggests that carefully elicited patient experience will indeed generate insights in each of these areas. In Exhibit 1, we offer examples relevant to the first of NQF’s priorities: insights regarding communication and care coordination. (The examples are verbatim and have not been edited.)
Exhibit 1. Excerpts from elicited patient narratives related to diagnostic communication and coordination
Diagnostic Mishaps Related to Patient-Clinician Communication
[I wish the care team had] acknowledged my daughter-in-law’s pain as well as her confusion and fear. The doctors should have listened better. They shouldn’t have suggested that that kind of pain could be from stress. My daughter-in-law felt that they weren’t understanding or believing of her when she was truly in pain. Her fears should have been acknowledged. She went home still feeling worried that she didn’t really know what was wrong. She just felt unjustified and that the doctors were treating her like she was wasting their time.
My son has extremely low platelet counts. Nobody knows the root of the problem. If someone would have immediately taken a thorough look at his medical history and not treated him like a number it would have been helpful. Treat people like people, not numbers. Start by communicating more than medical jargon. There’s zero compassion!
The focus of most of the specialists I saw was in their particular sub specialties. The cardiologist insisted that the symptoms I had following open heart surgery could not be related to my heart. They were, in fact, directly related to the hole in my new valve….No one spoke to me about the errors they made. I never saw the surgeon again after I left the hospital the first time. If someone had sat and talked with me, or even said they were sorry for the delay in diagnosis, I would have felt better about everything, but no one did. They did not acknowledge that I had really been sick due to their error in diagnosis and never had to go through any of it.
Diagnostic Mishaps Related to Coordination Among Clinicians
[The patient] complained about pain in her abdomen. Her tests all came back normal. Her doctor said it was just a part of aging. She kept complaining and was eventually referred to a specialist where she was diagnosed with cancer. [Following the diagnostic mistake or problem I wish the care team had] followed up with [the patient] about what the specialist had uncovered—shared info with her new doctor—they don’t seem to share or trust each other's notes.
Person was having issues with depression and also with supposed epileptic episodes. She moved several times and each time her medications were changed, dosages increased and additional medications given. I think she was alone in a way off state and taken advantage of because she had Medicaid and believed every doctor she spoke to. By the time she moved back home she had seen probably 10 different doctors, all adding to the confusion. Each having a different diagnosis and she ended up being treated for every ailment under the sun. A person going from state to state may have much information the new doctor never becomes aware of. And nobody probably knows if any one person is to blame.
My wife was struggling with digestive issues… got allergy testing as well as scoping… still unclear what was wrong… but not heartburn or allergies as originally diagnosed. Too many doctors that are too busy and don’t communicate with each other even though they are in the same group [might have led up to the issue]. It’s all lack of communication. All the symptoms tie together but specialists only work on one area. Think holistically! How hard is it to pick up the phone for a quick phone conversation. There needs to be a “quarterback” who runs it all… but the primary care doc is pretty uninvested.
What Research Reveals About Patient/Family Reporting of Diagnostic Experiences
Past research shows that patients and their families can identify diagnostic shortfalls and at least some factors that might have caused the perceived mishap or mediated its consequences. A handful of population-based surveys of Americans’ experiences with medical errors document cases that respondents believed involved diagnostic problems.24,29,38 About half of reported medical errors identified by patients or their families were seen to have some connection to a perceived diagnostic shortcoming.
Several additional studies that collected narrative accounts clarified the nature of perceived diagnostic shortfalls (Exhibit 2).19,24 These clustered in three broad (somewhat overlapping) categories: delays in diagnosis, missed or misdiagnosis, and failures or flawed interpretation of tests.
Exhibit 2. Types and prevalence of patient/family-reported diagnostic errors
| Type of Diagnostic Error | Frequency of Reported Concerns by Aspects of Diagnosis | |
|---|---|---|
| Empowered Patient Coalition Survey19 (n=184) |
Medical Error Recontact Survey24 (n=94) |
|
| Delay in diagnosis or treatment | 76.1% | 56.4% |
| Misdiagnosis | 65.2% | 68.1% |
| Proper tests not ordered | 48.4% | 18.1% |
| Results misplaced or disregarded | 17.9% | 18.0% |
| Lab or pathology lab mistake | 7.1% | 11.7% |
Key: n = sample size.
Note: For each source, the percentages in the columns total more than 100 percent because narratives often identify multiple forms of diagnostic error. The Medical Error Recontact Survey percentages were calculated by the authors from unpublished data.
Although a promising first step, these findings fall short of what ought to be expected when carefully and thoroughly assessing patient experience, in three ways.
First, existing research shows that patients and families will report diagnostic experiences when asked if an “error” has occurred. However, as noted earlier, patients’ understanding and description of diagnostic shortfalls often differ from the definitions of errors in medical research.28 Therefore, problems may go unreported because they do not accord with clinician-derived notions of what constitutes a medical error, thereby missing important opportunities for promoting diagnostic excellence. For example, patients may experience problems that undermine their confidence in the diagnostic process, communications about diagnoses, or meaningful understanding of the diagnosis, without perceiving any of these as representing “errors.”39
Second, the literature on patient reporting of diagnostic problems focuses on factors that lead to mishaps, not what patients experience in their aftermath. A substantial body of literature addresses patient interactions with clinicians after adverse events,21,27,31,40,41,42 including studies examining how best to ask patients and families about interactions after an adverse event.43 But these studies are largely limited to treatment-related errors. Because diagnostic problems more frequently involve multiple clinicians across multiple settings, the after-effects may be more difficult to constructively manage than for treatment errors.
Third, it becomes more challenging for patients and families to attribute responsibility among multiple clinicians,11,44 making it more difficult for them to respond in ways they think will reduce their risk of future diagnostic errors. Multiple clinicians also make it more challenging for clinicians to discuss diagnostic mishaps openly. Such conversations would call for them to assess and discuss with patients the actions of other clinicians, which they may be reluctant to do.45 For all these reasons, patients or families may fail to report some diagnostic problems because they see less potential in mitigating the induced harms.
Although past research collecting patient narratives shows that patients and families can describe in some detail aspects of their diagnostic experience,19,43 to date no research has assessed how reliably different aspects of these experiences are reported. Awareness of a problem does not always result in a willingness or readiness to fully describe all aspects of the event, even for patient experiences that involve quite egregious harms.46,47
The harder it is for patients to attribute responsibility for a problem, the less likely they are to report that the event occurred at all.39,47 That may lead to systematic underreporting of more complex diagnostic failures. It also may bias who reports on diagnostic problems, if less educated or less experienced patients find it harder to make sense of their diagnostic experiences.
Other biases may also emerge from differences in propensity to report diagnostic concerns, including previously documented forms of underreporting, such as among patients and families who have less trust that clinicians will respond to their concerns.39,46 Since experiencing adverse diagnostic events in the past erodes trust in ways that persist over time,24,48 those who have experienced repeated adverse events may be particularly reticent to report those experiences.
Thus, it is not sufficient to document that some patients (or their families) are willing to report on some aspects of their diagnostic experiences. If underreporting of certain aspects of care or the experiences of particular subsets of patients consistently occurs, partial or uneven feedback could actually worsen existing disparities in diagnostic quality.49,50,51,52,53
For example, clinicians and quality improvement teams may learn from patient feedback primarily about diagnostic shortfalls that emerge from interactions with a regular source of primary care, since patients and family can usually identify the clinician in this context. In this situation, diagnostic experiences of economically disadvantaged patients will be less frequently accounted for, because they are less likely to have a regular source of primary care.
To mitigate the risk of uneven or biased reporting, it is essential to carefully identify which diagnostic mishaps induce the most reliable and complete patient accounts and to identify subgroups of patients who convey their accounts more or less reliably. Based on the source of uneven reporting, methods of eliciting diagnostic experiences can be adapted to ensure greater consistency in how and how much can be learned from patient experience.
i. We will henceforth use the term “family” as a shorthand for these other actors. Our own (unpublished) data suggest that 79% of survey respondents who are not reporting on their own experiences as patients are describing experiences they identified as a family member of the patient.
