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ASH Receives “Racial Equity in Clinical Equations” Grant from Doris Duke Foundation

August 29, 2023

September 2023

Along with four other U.S. medical organizations, the American Society of Hematology (ASH) has received grant support through the Doris Duke Foundation’s (DDF) new “Racial Equity in Clinical Equations” initiative. The foundation’s landmark initiative will fund projects that examine the use of race in medical research – specifically with regard to clinical care algorithms – to better inform and improve patient care.

Through this grant, ASH will undertake a comprehensive effort, led by Maureen Okam Achebe, MD, MPH, and Lauren Merz, MD, MSc, of Brigham and Women’s Hospital in Boston, focused on ensuring that individuals with Duffy-null associated neutrophil count (DANC) receive appropriate medical care. These individuals are often incorrectly labeled as having neutropenia, which can lead to unnecessary, expensive, and invasive testing as well as additional negative patient outcomes. Conversely, in some instances, neutropenia is inappropriately attributed to the Duffy-null phenotype and is thus not adequately investigated.

The Need for Change

Over the years, it has become increasingly clear that the improper and unfounded inclusion of race in clinical care algorithms can create significant disparities in health care outcomes for patients, which has led to calls for change from clinicians, advocacy groups, and lawmakers. For example, in 2021, the American Academy of Pediatrics1 officially retired a clinical practice guideline in which race was a decision-making factor in diagnosing urinary tract infections (UTIs) in children. The original guideline cited a theoretical lower risk for UTI in children of color based on a blood group phenotyping hypothesis, though it was determined that there aren’t sufficient data to support or refute that hypothesis.

More recently, in early 2023, the Organ Trans­plant & Procurement Network2 announced it would enact a new process to correct wait times for kidney transplants. Previously, the calculations used to determine kidney function incorrectly estimated that patients who were identified as Black had a higher level of kidney function than patients identified as race-neutral, leading to longer transplant wait times for Black patients. The new process includes backdating the transplant wait times of Black patients.

According to a DDF press release, the “failure to consider the downstream impact of choosing – or excluding – race as an element in clinical equations can have disastrous results, potentially leading to the over, under, or misdiagnosis of disease, delayed treatment, and negative outcomes in patients of color.”3

Improving Care of Individuals with DANC

Approximately two in three people in the U.S. with African or Middle Eastern ancestry have the Duffy-null phenotype, defined as the non-​expression of the Duffy antigen on red blood cells. This phenotype results in a clinically insignificant lower absolute neutrophil count (ANC) compared to the commonly used reference population of individuals with European ancestry, nearly 100% of whom are Duffy positive.

Many individuals with the Duffy-null phenotype are thus incorrectly diagnosed with neutropenia; this misdiagnosis can result in unnecessary testing, delayed or discontinued chemotherapy, exclusion from clinical trials, and restricted access to therapeutics, in addition to inadequate care in cases of true neutropenia and other negative consequences. ASH firmly believes that ensuring proper care of these individuals can be achieved by expanding the collective understanding of DANC and its impact on the continuum of care from clinical trials to patient care. With the support of the DDF grant, ASH will work to empower health care systems to reconsider their ANC ranges for the Duffy-null population and educate health care professionals, clinical trialists, and the public about the implications of DANC.

As part of ASH’s broader commitment to health equity, the effort, launched on July 1, 2023, will employ a multifaceted approach to target health care systems, health care professionals, researchers, and patients that includes collaborative learning communities, online educational modules, creation and dissemination of patient-facing educational materials, advocacy efforts, and more.

Additional Grant Awards and Projects

DDF has awarded more than $10 million in grants to support projects that will document the impact of race-inclusive algorithms on patients, source data to inform new guidelines, and provide the medical field with a larger framework to consider and revise care algorithms that potentially misuse race. The four other groups supported by the grant include:

The American Academy of Pediatrics

The American Academy of Pediatrics will establish a process for identifying and correcting race-based clinical algorithms in pediatric care and will then test a revised algorithm in an emergency department setting. Ultimately, the project will provide a tested approach for other organizations looking to eliminate race-inclusive patient care guidelines.

The American Heart Association

The American Heart Association will investigate the complexity of factoring race and ethnicity into clinical care algorithms and risk prediction tools in cardiovascular medicine. The project aims to advance new scientific evidence and stimulate discourse among stakeholders and community members.

The Coalition to End Racism in Clinical Algorithms (CERCA)

Through its project, CERCA will assist several safety-net health systems in New York City with the development and implementation of expert-​informed plans to replace at least one of three current race-adjusted algorithms with a non-race-​adjusted algorithm. The three algorithms assess kidney disease, pulmonary disease, and the potential for successful vaginal birth following a cesarean section.

National Academies of Sciences, Engineering, and Medicine

The National Academies of Sciences, Engineering, and Medicine will convene a multidisciplinary committee to review and assess the current use of race and ethnicity in biomedical research. The committee will then develop a report with its conclusions and recommendations on the appropriate uses of racial and ethnic categories in biomedical research, current practices requiring updates, and policies and implementation strategies to support the adoption of best practices.

References

  1. Wright JL, Davis WS, Joseph MJ, et al. Eliminating race-based medicine. Pediatrics. 2022;150(1):e2022057998.
  2. Organ Procurement and Transplantation Network. OPTN Board approves waiting time adjustment for kidney transplant candidates affected by race-based calculation. Accessed July 21, 2023. https://www.optn.transplant.hrsa.gov/news/optn-board-approves-waiting-time-adjustment-for-kidney-transplant-candidates-affected-by-race-based-calculation/.
  3. Doris Duke Foundation. Doris Duke Foundation announces “racial equity in clinical equations.” Accessed July 21, 2023. https://www.dorisduke.org/news--insights/articles/doris-duke-foundation-announces-racial-equity-in-clinical-equations/?1=1&page=1.

 

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