Gleason Kelly T, Yuan Christina T, Haskell Helen, Anderson Michelle A, Evered Jane A, McDonald Kathryn M
School of Nursing, Johns Hopkins University, Baltimore, MD, United States.
Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, United States.
Front Health Serv. 2024 Nov 28;4:1474073. doi: 10.3389/frhs.2024.1474073. eCollection 2024.
Despite the prevalence and devastating consequences of diagnostic breakdowns, there have been minimal efforts to systematically collect patient insight into diagnostic problems and mistakes. Collaborating with patient advocates to guide how patient-derived insights are interpreted and used is a critical, yet often overlooked, approach to identifying actionable solutions that speak to patients' priorities.
We collaborated with patient advocate co-authors to guide our understanding of findings from a mixed methods survey on diagnostic problems and mistakes, and report implications for patient engagement at three levels of action: (1) individual level before, during, after encounters (); (2) within health service delivery systems (); and (3) policy advocacy ().
Our research team applied narrative elicitation methods to conduct a novel survey about Americans' diagnostic experiences in a national, population-based survey. We shared early results with patient co-authors who highlighted the importance of further exploring how health systems and clinicians address the aftermath of diagnostic mishaps. Based on their input, we summarized the quantitative and qualitative survey results about the aftermath and worked with our patient co-authors to explore how findings might inform actionable next steps, including efforts to catalyze patient action, quality improvement efforts, and policy reform.
Of the 3,684 survey respondents, about a third (33.0%, 1,216/3,684) of screened households reported diagnostic problems and mistakes in the past four years involving either themselves (18.9%, 697/3,684) or someone close to them (14.1%, 519/3,684). In the aftermath of a diagnostic mishap, over a third reported that someone in the healthcare setting where the mistake occurred acknowledged the mistake (35.9%, 432/1,204). In qualitative findings, reports that the health system "did nothing" surfacing as the most common response. Patient co-authors confirmed the results resonated with their experiences and emphasized the need for health systems to take accountability when a mishap occurs and to take follow-up actions to prevent future mishaps.
Patients and care partners not only want and deserve acknowledgement of diagnostic problems or mistakes in their own care, they also want assurance that steps are being taken to prevent similar events from happening to others. Across micro-, meso-, and macro-levels of action, working with patients to understand and act on contributors to diagnostic breakdowns is aligned with high-reliability organizing principles.
尽管诊断失误普遍存在且后果严重，但在系统收集患者对诊断问题和失误的见解方面所做的努力微乎其微。与患者权益倡导者合作，以指导如何解读和运用源自患者的见解，是确定符合患者优先事项的可行解决方案的关键方法，但这一方法常常被忽视。
我们与患者权益倡导者共同撰写本文，以指导我们理解一项关于诊断问题和失误的混合方法调查的结果，并报告在三个行动层面上对患者参与的影响：（1）诊疗过程前、中、后的个人层面；（2）医疗服务提供系统层面；（3）政策倡导层面。
我们的研究团队运用叙事启发法，在一项基于全国人口的调查中，就美国人的诊断经历开展了一项新颖的调查。我们与患者共同作者分享了早期结果，他们强调了进一步探索医疗系统和临床医生如何应对诊断失误后果的重要性。基于他们的意见，我们总结了关于后果的定量和定性调查结果，并与患者共同作者合作，探讨这些结果如何为可行的后续步骤提供信息，包括促使患者采取行动、质量改进措施和政策改革等方面的努力。
在3684名调查受访者中，约三分之一（33.0%，1216/3684）的被筛查家庭报告在过去四年中存在涉及自身（18.9%，697/3684）或其亲近之人（14.1%，519/3684）的诊断问题和失误。在诊断失误发生后，超过三分之一的受访者表示，失误发生所在医疗机构的某人承认了错误（35.9%，432/1204）。在定性研究结果中，报告称医疗系统“什么都没做”是最常见的回应。患者共同作者确认这些结果与他们的经历相符，并强调医疗系统在失误发生时需要承担责任，并采取后续行动以防止未来发生失误。
患者及其护理伙伴不仅希望并理应得到对其自身护理中诊断问题或失误的承认，他们还希望确保正在采取措施防止类似事件发生在他人身上。在微观、中观和宏观行动层面，与患者合作以理解诊断失误的成因并据此采取行动，符合高可靠性组织原则。
