Center of Excellence to achieve better cancer diagnosis
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 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 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.
Diagnostic Center of Excellence
CRPs
CRPs are processes for responding to problems in
healthcare with transparency, accountability, and learning. The project will target delays for marginalized patients with breast, lung, colorectal, and prostate cancer.
To address this problem, the Agency for Healthcare Research and Quality awarded a four-year, $3.8 million R18 grant to the Brigham and Women’s Hospital (Dr. Gordon Schiff) and the University of Washington (Dr. Thomas Gallagher) to create a joint Diagnostic Center of Excellence (DCE).
This DCE will seek out and address cases of delayed diagnosis of cancer by bringing together experts on diagnostic safety and on Communication and Resolution Programs (CRPs).
Goals
Design and implement a program to identify and learn from patients who experienced delays in cancer diagnosis
We will partner with organizational resources and 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.
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.
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.
Improvements in cancer diagnosis
Our project will fuel improvements in cancer diagnosis over time in multiple ways:
- Developing novel methods to detect delayed cancer diagnosis in real time
- Encouraging organizations to prioritize identifying and addressing delayed cancer diagnosis
- Uncovering valuable insights from patients about the causes of delayed cancer diagnosis as well as where the process went well
- Improving the patient experience by helping patients share and process their diagnostic journeys and providing them with compassionate explanations of what happened
- Developing and piloting tools, resources, and strategies to improve timely cancer diagnosis
- Reducing treatment costs through more timely cancer diagnosis, especially for marginalized patients who may lack solid health insurance coverage
- Narrowing the gap in late stage diagnosis historically marginalized patients face
- De-incentivizing malpractice suits by transparently providing relevant information about care breakdowns to patients who may otherwise have to bring a lawsuit to obtain it