Q&A: $10 million initiative seeks to address misuse of race in medicine

Key takeaways:

• An initiative to address health equity from the Doris Duke Foundation has garnered $10 million.
• PCPs can address health equity, an expert said, by questioning the tools they use to guide medical decisions.

The Doris Duke Foundation has launched a new initiative that aims to address the misuse of race in clinical equations.

Race may or may not be a relevant factor in formulas informing medical decision-making, according to a press release. The failure to consider the downstream health effects of race as an element in these equations, though, can have disastrous results, like misdiagnosis, delayed treatment, worse outcomes for patients and more.

The Racial Equity in Clinical Equations initiative aims to address these concerns, according to the release, with the support of more than $10 million in Doris Duke Foundation (DDF) grants. This is the largest investment to provide data that can help address the issue of inappropriate use of race in medical decision-making formulas.

The grants went to five organizations that “are well-positioned to bring together large medical and research communities in high impact disease areas to rigorously study” the subjects, the release said. The grant recipients include the American Academy of Pediatrics, the American Heart Association, the American Society of Hematology, the Coalition to End Racism in Clinical Algorithms and the National Academy of Sciences.

Healio spoke with Sindy Escobar-Alvarez, PhD, program director for medical research at the DDF, to learn more about the initiative, the importance of health equity and more.

Healio: Can you briefly discuss how this initiative came together?

Escobar-Alvarez: The DDF undertook a rigorous process to identify timely opportunities for impact in its areas of work that were surfaced by the pandemic and racial inequity. Analysis of the landscape, including interviews with various stakeholders, informed the development is a strategy for change. With support from our board of trustees, we approached organizations with high potential to promote change because of their influence over research norms and rigor, or for their potential to demonstrate the impact of medical research design decisions on patients.

Our goal in conceiving the initiative was to really move the needle toward health equity — to identify roadblocks and strategize the best ways to remove them. We know that in many cases, race is a factor in the clinical equations that underlie patient care and medical decision-making, but we also know that the origins of that use, and the potential impacts on patients of color, are profoundly under-researched. Many of these algorithms have been observed to lead to negative outcomes for Black and brown patients, but the data to support these observations are sparse, and guidelines to help researchers consider whether or not to include race in a clinical formula are nonexistent.

This is why we conceived our initiative to focus on both scientific research, to generate data that can prove or disprove harm to people of color in relation to certain equations, and on policy development, to generate recommendations that will reshape and guide research practice into the future.

Healio: What are a few examples of the health inequities this initiative aims to address?

Escobar-Alvarez: Just as the algorithms that supported kidney disease diagnosis were proven to delay treatment for people of color by assuming — without foundation — higher scores for normal kidney function in Black patients, there are many other equations that need to be revisited to assess their impact on patients of color. A few currently under examination or revision include:

• The formula that indicates whether toddler girls presenting with the symptoms of a urinary tract infection should have a urine test to confirm it. This equation used race as a factor and resulted in Black girls being underdiagnosed and having delays in receiving treatment for a painful condition. This algorithm has been altered to remove race from the equation and replace it with factors including previous UTIs and fever within the previous 24 hours.
• Spirometers that assign a lower normal score to Black patients based on the baseless 18th century assumption that Black patients have lower lung capacity than white patients. The American Thoracic Society called for a change in this formula in the spring of 2023.
• The equation that helps to assess whether a child-bearing person is recommended for a vaginal birth after a C-section. This algorithm uses race as a factor based on the erroneous notion that Black women have smaller pelvises and are less capable of carrying a baby to term.

For many people with West African or Middle Eastern ancestry, low neutrophil counts are normal — a genetic inheritance from an adaptation that protected people from malaria. But because race is not a factor in the blood counts that screen for blood disease, many people of color in the U.S. go through unnecessary screening, painful bone marrow biopsies, etc. to rule out neutropenia or leukemia that they don’t have. It is a difficult issue, as naturally physicians don’t want to risk missing a serious diagnosis. However, it is a known factor that is not acknowledged in current normal white blood cell ranges.

Healio: Can you describe the importance of addressing health equity?

Escobar-Alvarez: A society functions best when as many of its citizens as possible are healthy and thriving. Health care disparities based on the social construct of race are avoidable. Eradicating them would be a major step toward becoming a nation where all citizens can truly enjoy the right to life, liberty and the pursuit of happiness.

Healio: What are some of the tangible actions the initiative will take to reach its goals?

Escobar-Alvarez: Our more than $10 million investment is the largest ever to address the use of race in clinical equations, and the initiative is designed to further research and policy development that will clear the path to make the re-examination of a wide range of clinical algorithms possible. We launched the initiative with a landmark summit that brought together physicians, scientists, policymakers and funders working on this issue to learn from each other and spark future collaboration. A report detailing action items flowing from that meeting will be released soon.

Healio: What should primary care physicians take away from this? What is important for them to know?

Escobar-Alvarez: The decision-making tools that underlie patient care have all too often absorbed outdated thinking about race — which we now understand as a social construct, not a biological one — into their models. So, if physicians have questions about why a measurement adds or detracts points based on race, or whether people of color have been included in clinical trials that lead to changes in practice, they should raise them. Much of the work currently being done to address biased algorithms has been surfaced by medical students and young physicians who have questioned the way things are done, with profound results.

Question the tools that are at your disposal to guide medical decisions. Ask whether they have been tested for their potential to drive different outcomes by race. If you see race showing up as a factor to consider, ask whether the rationale for this consideration is justified. This is important to know because being aware can help provide care that does not inadvertently introduce harm.

Reference:

• Doris Duke Foundation announces ‘Racial Equity in Clinical Equations.’ https://www.dorisduke.org/news--insights/articles/doris-duke-foundation-announces-racial-equity-in-clinical-equations. Published June 27, 2023. Accessed July 3, 2023.