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

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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.