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: 10640529
• 负责人: THOMAS Henry GALLAGHER
• 金额: $ 99.69万
• 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/10640529
• 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.

癌症诊断的延误太常见了。对于被诊断为晚期癌症的患者，尤其是 那些症状或发现可能代表错过了早期诊断机会的人，这可能是毁灭性的。 这些担忧因癌症症状的非特异性、事后诸葛亮的偏见、围绕 过度诊断和过度检测，现在由于COVID而延误了筛查和护理。一些患者经历了 延迟诊断可能面临健康的社会决定因素、种族主义、语言障碍、 或医疗保险不足。先前的研究检查了与延迟癌症诊断相关的系统因素，但 在减少这些延误方面的进展一直难以捉摸。耐心的声音一直不见了，尽管它很可能是 最有发言权的是延迟是如何发生的，以及改进的机会。在我们之前的工作中，我们 有学问的病人经常意识到他们的护理中存在的问题，但不愿直言不讳，因为担心这可能会对他们造成不利影响 影响他们的护理。对于推迟的癌症诊断，医疗团队的所有成员都保持沉默，因为 对医疗事故诉讼的恐惧，以及对透明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 通过聚集诊断安全方面的国家专家来预防癌症(布里格姆妇女医院/哈佛医学院 学校)和通信与解决方案项目，或CRPS(华盛顿大学)。CRP是系统化的 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 乳腺癌、肺癌、结直肠癌和前列腺癌患者的目标延迟和差异 其中有推荐的筛查指南。该项目包括以下具体目标：具体目标1： 创建DCE以设计和实施一项计划，以识别和学习在以下方面遇到延迟的患者 四种主要癌症的诊断。我们将与现有组织资源合作，并通过以下方式帮助优化这些资源 汇聚多个数据流，以便于实时识别患者，特别是来自 被边缘化的人群，他们可能经历了癌症诊断的延迟。具体目标2：参与和 向那些经历过延迟癌症诊断的患者学习。我们将确定240个最近诊断出的癌症 达纳·法伯癌症研究所和弗雷德·哈钦森癌症中心的患者。使用一种新的患者代言人 干预，我们将进行系列访谈，以建立信任并了解潜在错失的机会 更早的诊断。然后，我们将使用现有的经过验证的工具分析这些案例以寻找改进机会。特定的 目的3.实施和评估可推广的干预措施，以改进癌症诊断过程。我们的建议 委员会将审查目标1和目标2提出的改善癌症诊断的想法。我们将测试有希望的系统 使用计划-行动-学习-行动(PDSA)循环的解决方案。我们将开发一种强大的、多方面的改进癌症诊断 专为传播而设计的通信工具包。通过邀请坐在前排座位上的患者和家属 在完整的诊断过程中，我们将利用新的见解来提高癌症的及时性。