Pre-hospital Diagnostic Delay
Diagnostic errors account for almost 60 percent of all medical errors and an estimated 40,000-80,000 deaths per year. A 2015 National Academy of Medicine report estimates that “nearly every American will experience a diagnostic error in their lifetime, sometimes with devastating consequences.” Through extensive research, many aspects of diagnostic error that occur once a patient reaches a hospital or other care environment where a diagnosis is given are understood. However, we understood much less about delays that occur in the earliest stages of a patient’s diagnostic journey. This lack of clarity reflects minimal available evidence about how patients perceive symptoms, when they seek care, their interactions with the emergency medical system (EMS), how and when they reach an appropriate health care setting, and the complicated roles of structural racism, geography, social determinants, and other factors.
In an analysis of malpractice claims, three clinical conditions – cancer, acute cardiovascular events, and sepsis -- accounted for three-quarters of all deaths and other serious harms from diagnostic error. The burden of these conditions falls disproportionately on communities of color and populations in underserved urban and rural communities. These disparities manifest in worse outcomes and greater than average severity at the time of diagnosis for some populations, suggesting that delays are also more common among these populations. These three conditions are an important target for health services researchers not only because of their burden but also because each has relatively effective treatments when caught early. As such, minimizing the time to diagnosis after the onset of symptoms is fundamental to high-quality care.
New Grants Examining Pre-hospital Diagnostic Delay
In November 2018, the Gordon and Betty Moore Foundation announced its Diagnostic Excellence Initiative, which sought to improve diagnostic performance. In particular, the initiative sought to reduce harm from erroneous or delayed diagnoses, reduce costs and redundancy in the diagnostic process, improve health outcomes, and save lives. In 2021, the Gordon and Betty Moore Foundation partnered with AcademyHealth to solicit and fund new rigorous health services research about pre-hospital diagnostic delay. Today, AcademyHealth is announcing four grants that will expand the base of evidence available to understand and ultimately address pre-hospital delays. Two of the awarded grants examine the effects of pre-hospital delays in cancer diagnosis, one focuses on sepsis, and the fourth examines stroke.
A research project led by Mark Schlesinger, Ph.D., at the Yale School of Public Health, will determine if and how coverage uncertainty among insured populations has a wider impact and accounts for more ethnic/racial disparities in late-stage cancer diagnoses. The research team defines coverage uncertainty as the challenges insurance enrollees face in reliably predicting which medical expenses their policies will cover.
Another grant, led by Lorinda Coombs, Ph.D., M.S.N., FNP-BC, and Caroline Thompson, Ph.D., from the University of North Carolina at Chapel Hill, will improve our understanding of pre-hospital delays for cancer diagnosis in rural, impoverished settings with racially diverse, uninsured, and underinsured individuals.
Jeffrey Yaeger, M.D., M.P.H., from the University of Rochester, will direct a study that aims to identify targets to reduce pediatric sepsis disparities through tools and strategies to be developed in the future. The goal of the study is to estimate the extent to which racial disparities exist in pediatric severe sepsis/septic shock outcomes and to understand how appraisal and help-seeking behaviors may differ by race.
The fourth project is led by J. Adam Oostema, M.D., M.S., and Chi Chang, Ph.D., M.S., from Michigan State University College of Human Medicine. This study seeks to understand whether narrative data in EMS notes may help address the fragmentation of documentation systems and pre-hospital data that does not allow one to determine potential reasons for misdiagnosis. The goal of this study is to improve Emergency Medical Services (EMS) care and patient outcomes through improvement programs informed by patient, disease, situational, and EMS factors associated with failure to recognize stroke in the pre-hospital setting.
Together with the Gordon and Betty Moore Foundation, AcademyHealth will support grantees as they conduct their research over the next 12 months and help them widely disseminate the findings. For more information, see the main Diagnostic Delay Project page.