In late June, the Council of Medical Specialty Societies (CMSS) announced the launch of Encoding Equity in Clinical Research & Practice: Rethinking Race in Clinical Algorithms, a new alliance led by CMSS and supported by the Doris Duke Foundation as a cofounding partner. The American Society of Hematology (ASH) is one of 11 participating organizations.
The Encoding Equity alliance was born out of a growing consensus that the use of race as a biologic factor in clinical care algorithms can be harmful to patients. The alliance will serve as a hub to support and amplify the work of participating organizations, which have developed their own initiatives to identify racial inequities in clinical algorithms, revise these decision tools, and put them into clinical practice. In addition to promoting these organizations, the alliance will work with participating organizations to develop best practices and share educational resources, including shared language, definitions, and communication strategies for various stakeholder communities, and guidance on the appropriate use of race in clinical research.
The alliance is made up of 11 medical specialty societies and health care organizations:
- American Academy of Pediatrics
- American Heart Association
- American Medical Student Association
- American Society of Hematology
- American Society of Nephrology
- National Kidney Foundation
- American Thoracic Society
- Association of Health Care Journalists
- Coalition to End Racism in Clinical Algorithms
- Council of Medical Specialty Societies
- Universities Allied for Essential Medicines
As part of its own initiative, which is also supported by the Doris Duke Foundation, ASH is leading a two-year health equity project that focuses 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 are expected to have the Duffy-null phenotype, defined as the non-expression of the Duffy antigen on red blood cells. Over the years, the medical field has come to understand that race and ethnicity are not biologic facts but instead are sociopolitical constructs. As such, genetic traits do not obey racial boundaries or geographic constructs, and using them as proxies in delivering clinical care warrants extreme caution. Although the Duffy-null phenotype is not exclusive to African or Arabian Peninsula genetic ancestry, it is most commonly found among these populations.
Individuals with the Duffy-null phenotype have 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. Consequently, these individuals are often incorrectly labeled as having neutropenia, and this mislabeling can lead to unnecessary, expensive, and invasive testing, delayed or discontinued chemotherapy, exclusion from clinical trials, restricted access to therapeutics, and other negative consequences.
“ASH took on this project at a most opportune time,” said Maureen Achebe, MD, MPH, who is serving as chair of the project oversight group for ASH’s ANC by Duffy Status Project. She further explained, “Having just suffered a worldwide pandemic that exposed the health inequities in our country, the medical community was sensitized to address obvious potential sources of health disparities … Here, we have a well-defined biologic variant being classified as abnormal and exposing members of a minority group to the potential harm of unnecessary investigations, clinical trial exclusion, inappropriate medication stoppage, and other disadvantages.”
To increase the understanding of DANC and its impact on the continuum of care, ASH is leading a multifaceted effort that involves three distinct phases:
- Empowering health care systems to reconsider their ANC ranges for the Duffy-null population and disseminating information about their efforts
- Educating health care professionals about DANC
- Intervening at the population level, including education of clinical trialists and the public about the implications of DANC
“The engagement of our peers in this work has been extraordinary,” said Dr. Achebe, who also serves as clinical director of hematology services at Brigham and Women’s Hospital and Dana-Farber Cancer Institute. “We have engaged 24 health care systems to participate in this work following our outlined protocol. We meet regularly, are confirming [institutional review board] approvals, setting up a database, and will begin collecting and collating data.”
Dr. Achebe shared that the project’s volunteer oversight group is well into preparing for the second phase and is working with a consultant to develop teaching aids for the education of health care professionals, including primary care providers, hematologists, and other specialists. Formal work on phase three is expected to begin later this year.
“Ultimately, our hope is that this project highlights the importance of the knowledge of the Duffy-null phenotype in any individual who presents with an ANC that is seemingly below normal limits, and that these individuals are no longer at a disadvantage in receiving health care,” Dr. Achebe concluded.