ACHIEVING BETTER CANCER DIAGNOSIS (ABCD): Identifying, supporting, and learning from marginalized patients who experience delayed cancer diagnosis

实现更好的癌症诊断 (ABCD)：识别、支持癌症诊断延迟的边缘化患者并向其学习

• 批准号: 10708958
• 负责人: THOMAS Henry GALLAGHER
• 金额: $ 96.29万
• 依托单位: BRIGHAM AND WOMEN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-30 至 2026-09-29
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10708958
• 关键词: ACHIEVING; BETTER; CANCER; DIAGNOSIS; ABCD

Delays in the diagnosis of cancer are too common. For patients diagnosed with advanced stage cancers, particularly those with symptoms or findings that may represent missed opportunities for earlier diagnosis, this can be devastating. These concerns are complicated by the nonspecific nature of cancer symptoms, hindsight bias, controversies around over-diagnosis and over-testing, and now delays in screening and care due to COVID. Some patients experiencing a delayed diagnosis may face additional challenges resulting from social determinants of health, racism, language barriers, or inadequate health insurance. Prior studies examined system factors associated with delayed cancer diagnosis, but progress on reducing these delays has been elusive. The patient voice has been missing, even though it is likely the one voice with the most to say about how the delay occurred and opportunities for improvement. In our prior work, we learned patients are frequently aware of problems in their care but hesitate to speak up for fear that it might adversely affect their care. Silence around the delayed cancer diagnosis extends to all members of the healthcare team, given the fear of malpractice litigation and the ingrained resistance to addressing problems in care transparently. We propose a Diagnostic Center of Excellence (DCE) that will seek out and transparently address cases and causes of delayed diagnosis of cancer by bringing together national experts on diagnostic safety (Brigham and Women’s Hospital/Harvard Medical School) and on Communication and Resolution Programs, or CRPs (University of Washington). CRPs are systematic processes for responding to problems in healthcare with transparency, accountability and learning. The project will target delays and disparities for historically marginalized patients with breast, lung, colorectal, and prostate cancer, each of which has recommended screening guidelines. The project encompasses the following specific aims: Specific Aim 1: Create a DCE to design and implement a program to identify and learn from patients who experienced delays in diagnosis of 4 leading cancers. We will partner with existing organizational resources and help to optimize them by bringing together multiple streams of data to facilitate real-time identification of patients, particularly those from marginalized populations, who may have experienced a delay in the diagnosis of cancer. Specific Aim 2: Engage and learn from patients who have experienced delayed cancer diagnoses. We will identify 240 recently diagnosed cancer patients at Dana Farber Cancer Institute and Fred Hutchinson Cancer Center. Using a novel patient advocate intervention, we will conduct serial interviews to develop trust and learn about potential missed opportunities for earlier diagnosis. We will then analyze these cases for improvement opportunities using existing validated tools. Specific Aim 3. Implement and evaluate generalizable interventions to improve the cancer diagnostic process. Our Advisory Committee will review ideas to improve cancer diagnosis emanating from Aims 1 and 2. We will test promising system solutions using plan-do-study-act (PDSA) cycles. We will develop a robust, multifaceted Improving Cancer Diagnosis Communication Toolkit designed for dissemination. By engaging patients and families who have a front row seat to the full diagnostic process, we will harness novel insights to improve timely diagnosis of cancer.

癌症诊断的延迟太常见了。对于诊断为晚期癌症的患者，特别是 对于那些症状或发现可能代表错过早期诊断机会的人，这可能是毁灭性的。 这些担忧由于癌症症状的非特异性、后见之明的偏见、围绕癌症的争议而变得复杂。 过度诊断和过度检测，现在又因新冠肺炎而延误筛查和护理。一些患者经历了 延迟诊断可能会面临更多的挑战，这些挑战来自健康的社会决定因素，种族主义，语言障碍， 或健康保险不足。先前的研究检查了与延迟癌症诊断相关的系统因素， 在减少这些延误方面一直没有取得进展。病人的声音不见了，尽管它很可能是 对于延迟是如何发生的以及改进的机会，发言最多。在我们之前的工作中，我们 有经验的病人经常意识到他们护理中的问题，但由于担心会对他们不利， 影响他们的照顾。围绕延迟癌症诊断的沉默延伸到医疗团队的所有成员，考虑到 对医疗事故诉讼的恐惧以及对透明地解决护理问题的根深蒂固的抵制。我们提出了一个 卓越诊断中心（DCE）将寻找并透明地解决延迟诊断的病例和原因 通过汇集全国诊断安全专家（布里格姆妇女医院/哈佛医学中心）， 学校）和沟通和解决方案，或CRP（华盛顿大学）。CRP是系统性的 以透明、问责和学习的方式应对医疗保健问题的流程。该项目将 针对乳腺癌、肺癌、结直肠癌和前列腺癌患者的目标延迟和差异， 其中之一推荐了筛查指南。具体目标1： 创建一个DCE来设计和实施一个程序，以识别和学习经历延迟的患者， 4种主要癌症的诊断我们将与现有的组织资源合作，并通过以下方式帮助优化这些资源： 汇集多个数据流，以促进实时识别患者，特别是来自 边缘化人群，他们可能经历了癌症诊断的延迟。具体目标2：参与和 从经历过癌症诊断延迟的患者身上学习。我们将确定240个最近诊断的癌症 Dana Farber癌症研究所和Fred哈钦森癌症中心的患者。使用新的患者倡导者 干预，我们将进行系列访谈，以建立信任，并了解潜在的错过机会， 早期诊断然后，我们将使用现有的验证工具分析这些案例，以寻找改进机会。具体 目标3。实施和评估可推广的干预措施，以改善癌症诊断过程。参谋的 委员会将审查源自目标1和2的改进癌症诊断的想法。我们将测试有希望的系统 使用计划-执行-学习-行动（PDSA）循环的解决方案。我们将开发一个强大的，多方面的改善癌症诊断 为传播而设计的通信工具包。通过让坐在前排的病人和家属参与进来， 在整个诊断过程中，我们将利用新的见解来提高癌症的及时诊断。