Initiative Launches with Landmark Convening and Over $10 Million in New Grants
Largest Commitment Ever to Examine the Misuse of Race in Medical Research Informing Patient Care
New York – June 27, 2023 – The potentially improper use of race in the design of clinical algorithms – mathematical models used to guide disease diagnosis and treatment – can lead to profound racial disparities in health care outcomes. Today, the Doris Duke Foundation (DDF) steps forward to address this problem with Racial Equity in Clinical Equations, a new initiative launching with a landmark convening and the largest ever investment in gathering the evidence necessary to inform change.
Attention to the potentially dangerous results of race misuse in clinical equations is growing, as physicians, policymakers, and patient advocates have begun to scrutinize formulas used to inform evaluations such as the diagnosis of kidney disease and transplant allocation, pediatric care including urinary tract infections in toddlers, and the ability to have a vaginal birth after C-section. What is critically necessary is a concerted and collaborative movement among funders, researchers, clinicians and patients to develop a more rigorous approach to how race is applied and understood in the design of clinical algorithms and the assessments they inform.
The Doris Duke Foundation aims to fuel such a movement with this initiative. The goals of Racial Equity in Clinical Equations are to increase awareness of the problem within the medical research community, to build support for the examination and revision of clinical algorithms that improperly use race, and to generate evidence that can inform new guidelines to help shape clinical equations that improve health care outcomes.
The work is urgent. Race may or may not be a relevant factor in individual formulas that inform medical decision-making, but a 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.
Racial Equity in Clinical Equations addresses this concern. The initiative begins with a summit in partnership with The Gordon and Betty Moore Foundation, the Council of Medical Specialty Societies and the National Academy of Medicine, and with over $10 million in new Doris Duke Foundation grants – the largest investment to date to provide data that can effect progress on this issue. The summit will draw together powerful stakeholders in the clinical, research, funding, and policy realms to learn about ongoing efforts, and identify opportunities to address the misuse of race in formulas guiding medical decision-making head on.
Racial Equity in Clinical Equations grants will document the impact on patients of existing algorithms with potential race misuse, provide vital data to inform new guidelines, and ultimately enable the medical research community to identify a framework to reconsider and potentially revise current and future mathematical models that underlie patient care.
“Great science advances equity through excellence,” comments DDF President and CEO Sam Gill. “These grants will help ensure we bring the highest scientific rigor to the consideration of race in clinical algorithms so that we can begin to close intolerable racial disparities in health outcomes.”
The Foundation has awarded the new grants to five organizations that are well positioned to bring together large medical and research communities in high impact disease areas to rigorously study the consequences of, and potential for, race misuse in existing clinical algorithms, disseminate findings, set norms, and issue recommendations to influence research and clinical practice, and policy. The national and local organizations listed below stand out for their top leadership commitment to health equity (please see the end of this release for more information on their projects, and links to further detail).
- The American Academy of Pediatrics
- The American Heart Association
- The American Society of Hematology
- The Coalition to End Racism in Clinical Algorithms
- The National Academy of Sciences
“Clinicians need tools developed through rigorous research that validate the instruments’ performance and ensure patient safety”, comments DDF Program Director for Medical Research Dr. Sindy Escobar Alvarez. “Taking bold steps to revisit even the most standard healthcare tools with openness and creativity is integral to the research community’s responsibility to evolve and improve conventional wisdom for the benefit of human health – for all.”
Grantee Projects
American Academy of Pediatrics
Early life experiences are foundational in shaping health across a lifetime. The American Academy of Pediatrics ensures all children can access affirming, anti-racist health care. The project, “Establishing a Race-Conscious Approach to Clinical Guidance in Pediatric Care,” will establish a process for identifying and correcting race-normed clinical algorithms and will test a revised algorithm in a current emergency department setting. Dialogue about and dissemination of these findings will provide a tested approach for similar organizations seeking to eliminate race-based medicine in healthcare and inform the development of future clinical recommendations, improving health outcomes for children everywhere.
American Heart Association
The American Heart Association is a champion for health equity and tackling structural racism as a driver of persistent health disparities in the United States. Through this project, the Association will investigate the complex issue of how race and ethnicity factor into clinical care algorithms and risk prediction tools in cardiovascular science and medicine. This project will advance rigorous new scientific evidence and stimulate discourse among stakeholders and audiences in the Association’s sphere of influence leveraging significant matching resources including research funding, expert volunteers, datasets, and communications platforms including the Association’s influential scientific conferences and publications.
American Society of Hematology
The American Society of Hematology (ASH) will lead a multi-faceted effort focused on ensuring that individuals with Duffy-null associated neutrophil count (DANC) receive appropriate care. Two in three people in the U.S. who are of African or Middle Eastern ancestry have the Duffy null phenotype (non-expression of the Duffy antigen on red blood cells). These individuals are often incorrectly labeled as having neutropenia. This mislabeling leads to unnecessary and invasive testing, delayed treatments, and exclusion from clinical trials. ASH’s work aims to increase the understanding of DANC and its impact on the continuum from clinical trials to proper care.
The Coalition to End Racism in Clinical Algorithms
The Coalition to End Racism in Clinical Algorithms (CERCA) is a flagship initiative of the NYC Department of Health and Mental Hygiene’s Office of the Chief Medical Officer to address racial inequities in the healthcare delivery system and to bridge public health and healthcare. This project will provide targeted assistance to a group of New York City safety-net health systems in the development and implementation of expert-informed plans to replace at least one of three current algorithms that use race adjustment with a non-race-adjusted algorithm used to assess kidney disease, pulmonary disease or potential for successful vaginal birth after cesarean section.
National Academies of Sciences, Engineering, and Medicine
The National Academies of Sciences, Engineering, and Medicine will convene a multidisciplinary committee to assess the current use of the social constructs of race and ethnicity across the spectrum of biomedical research. Based on its review of the literature and other expert input, the committee will develop a report with its conclusions and recommendations regarding the circumstances in which it is appropriate to use racial and ethnic categories in biomedical research, needed changes to current practices, and policies and implementation strategies to support the adoption of best practices across the biomedical research community.
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About the Doris Duke Foundation
The Doris Duke Foundation (DDF) supports the well-being of people and the planet for a more creative, equitable and sustainable future. The foundation operates five national grantmaking programs—in the performing arts, the environment, medical research, child and family well-being, and mutual understanding between communities—as well as Duke Farms and Shangri La, two centers that serve the public directly. DDF’s Medical Research Program supports clinical research that advances the translation of biomedical discoveries into new preventions, diagnoses and treatments for human diseases.