Timely and Accurate Diagnosis for All
In November 2018, the Gordon and Betty Moore Foundation announced its Diagnostic Excellence Initiative with aims to improve diagnostic performance by eliminating harm caused by incorrect or delayed diagnoses, reducing unnecessary costs and duplication, improving health outcomes, and ultimately, saving lives. After launching a research solicitation on pre-hospital diagnosis delay, the Gordon and Betty Moore Foundation and AcademyHealth partnered again to solicit and fund rigorous health services research on a broad and poignant issue—diagnostic equity.
The path to diagnosis can look completely different from one patient to another. While some are clear and straightforward, others are time consuming, frustrating, and rife with inequities. AcademyHealth held three listening sessions in early 2024, facilitated by the National Health Council, to inform the call for proposals released earlier this year and heard from patients from all walks of life about their difficulties receiving a timely and accurate diagnosis. Some struggled to secure a referral or appointment with a specialist; others had to fight against racial biases demonstrated by providers. Some patients described feeling gaslit by the medical system or unsafe in certain care delivery settings. Two patients described pleading for care and being overlooked while experiencing stroke symptoms. Although these stories are jarring, unfortunately, they are not uncommon.
In the United States, nearly 60 percent of all medical errors are due to inaccurate diagnoses, contributing to 40,000-80,000 deaths per year. This disheartening statistic aligns with the stories above and highlights the urgent need to improve diagnostic quality and safety. According to the National Academy of Medicine’s 2015 report, “Improving Diagnosis in Health Care,” most Americans will face a diagnostic error in their lifetime, often with severe consequences. Diagnostic inequities particularly harm underserved communities affected by social determinants of health like race, socioeconomic status, and geography. As noted by an expert recently interviewed by AcademyHealth, the barriers faced by such populations are multiplicative, worsening their risk of inequity.
New Grants Examining Diagnostic Inequity
Today, AcademyHealth is announcing four grants that will expand the base of evidence available to improve the timeliness, accuracy, and clarity of diagnoses for all patients. The four grantees will critically examine opportunities to achieve diagnostic excellence in pediatric rheumatology, cardiology, oncology, and mental health, respectively.
A research project led by Anna Costello, A.B, M.D., at the Children’s Hospital of Philadelphia, seeks to identify barriers and facilitators to receiving a timely diagnosis of Juvenile Idiopathic Arthritis (JIA). This study aims to inform targets for intervention in future studies to improve diagnosis and promote diagnostic excellence for pediatric rheumatic diseases.
Another grant, led by Milla Arabadjian, Ph.D., F.N.P.-B.C., R.N., and Donglan Zhang, Ph.D., from NYU Grossman Long Island School of Medicine, seeks to identify interventions that reduce disparities in the diagnosis of hypertrophic cardiomyopathy (HCM).
Saul Weingart, M.D., Ph.D., at Tufts Medical Center, will lead a project that identifies clinical and socioeconomic factors associated with diagnostic delays of more than 90 days from symptom onset or abnormal screening test to confirmed breast cancer diagnosis. The goal of this study is to develop interventions that support vulnerable patients, families, and clinicians to improve timely, effective, and equitable diagnosis and its burdens.
The fourth project is led by Derek M. Griffith, Ph.D., and Syed Shabab Wahid, DrPH, from the University of Pennsylvania and Georgetown University, respectively. This study will refine our understanding of how clinicians understand, diagnose, and treat Black men in need of mental health services for depression.
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 Equity Project page.