The National Academies of Sciences, Engineering, and Medicine hosted a workshop, sponsored by the Gordon and Betty Moore Foundation, to examine the current scientific landscape and research opportunities for improving cancer diagnosis within the U.S. health care system. This workshop was part of a series on diagnostic excellence. Below are key themes discussed by workshop participants.
“We believe diagnosis must be safe, timely, effective, efficient, equitable, and patient centered.”
— Daniel Yang, Gordon and Betty Moore Foundation
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“Cancer diagnosis is a complex process with many coordination demands or interdependencies among the people, teams, and care settings involved.”
— Sallie Weaver, National Cancer Institute
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“No one knows the patient experience firsthand like the patient…because those powerful stories bring the data to life. It is what makes the humanity in science.”
— Tamika Felder, Cervivor
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“We tend to treat our packages better than our patients. I can tell you at any time where an Amazon package is and when it is going to be delivered to my house. But we do not know when our patients are falling through the cracks.”
— Blase Polite, The University of Chicago
“In many cancer centers, we catch the patient at that point of diagnosis, and the time to first treatment has become a real guiding light for us as a measure that we can get behind.”
— Mia Levy, Foundation Health
“We cannot optimize diagnostic care delivery and produce equitable health outcomes with inconsistent [health insurance] coverage.”
— Jasmin Tiro, University of Texas Southwestern Medical Center
“One thing that would be really valuable is more Medicaid linkages so that we can connect the data between a cancer registry and the care being received by the underserved groups who are being treated by Medicaid in some of our states.”
— Caroline Thompson, University of North Carolina
“People have delayed diagnoses all the time. There are multiple reasons. We have to look at those multiple reasons, which are really related to access to equitable care, access to quality care, access to ability to take time off.”
— Gwen Darien, National Patient Advocate Foundation
“One of the things we really want to do more of and need to do more is hearing from patients about their journeys, hearing their stories, supporting them at this point but learning what they have been through.”
— Gordon Schiff, Harvard Medical School
“Some of the barriers to ensuring earlier diagnosis and prompt treatment include patient awareness, patient health literacy, cancer stigma, or limited access to care. Within the health care system, accurate diagnosis demands prompt attention to patient complaints, accurate differential diagnosis, and importantly, continuity of care.”
— Caroline Thompson, University of North Carolina
“A great gap in development is the lack of diverse and representative data…. There are few public data sets and often they come from single institutions. We need a representative data set.”
— Maryellen Giger, The University of Chicago
“A big first step in the U.S. is to focus on describing pre-diagnostic care pathways in U.S. health care systems, using high-quality data. Looking at the question of who is being diagnosed with cancer, but expanding this to think about when, where, how, and by whom are we getting cancer diagnoses.”
— Liz Sarma, National Cancer Institute
“Can we get to a point where maybe there is a test we can use that can detect multiple cancers? I would say that is the ideal of the future and there are a lot of technological challenges.”
— Chyke Doubeni, Mayo Clinic
“My parting wish is that we can all lean into not only the wonder of our technological discoveries in cancer care … but also our missteps in cancer diagnosis so that we can emerge with a systematically better approach that is equitable for all. That would truly be our shining moment.”
— Andrew Bindman, Kaiser Permanente
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