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Neurology Editors On New Guidelines for Reporting Racial and Ethnic Disparities in Research

Article In Brief

Some medical journals, including those in neurology, have developed new standards and criteria for addressing racial and ethnic disparities in medical and scientific research while others are in the process of doing so.

For more than two decades, the calculation of estimated glomerular filtration rate (eGFR) equations to assess chronic kidney disease (CKD), by using serum creatine and factoring in age, height, weight, and gender, has included a race-based coefficient that assumes Black people have greater muscle mass leading to naturally higher serum creatinine levels. Every eGFR result is then reported with two values: one for Blacks and the other for non-Blacks.

This flawed racial assumption may not have been intended to lead to less equitable outcomes, but that can indeed be the result: if the eGFR calculation assigns Black patients as having higher kidney function, that can lead to delays in referrals for specialty care and transplantation, as documented in a 2020 study published in the Journal of General Internal Medicine. In recent years, an increasing number of institutions, including the University of Washington and Mass General Brigham, have moved away from the use of race in estimating GFR.

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“I think their approach [at Circulation] is very thoughtful and careful. Its a challenging area to tackle and there is a lot of room to make mistakes. Its very easy to confound some of the social determinants of health with other factors, when they are critical and often play a far greater role in outcomes than anything else.”—DR. MICHAEL R. SPERLING

This example from nephrology, not neurology, dramatically illustrates the ways in which the longstanding assumption that race is a biological fact rather than a social and cultural construct can have severely detrimental effects on the health of Black people.

In an effort to address these issues, some medical journals have developed new standards and criteria for addressing racial and ethnic disparities in medical and scientific research while others are in the process of doing so.

In February, the joint American Heart Association (AHA)/American Stroke Association (ASA) journal Circulation introduced new disparities research guidelines, aimed at “providing guidance for authors submitting scientific manuscripts that primarily focus on reporting health differences by race and/or ethnicity.”

“Our November 2020 AHA Presidential Advisory called out structural racism as a fundamental driver of health disparities,” said AHA president Mitchell Elkind, MD, FAAN, FAHA, professor of neurology and epidemiology at Columbia University, and chief of the division of neurology clinical outcomes research and population sciences in the neurology department. “We very much support efforts to try to improve the quality of research around structural racism and health disparities, and this effort by Circulation's editors is a terrific example of how we concretely go about doing that.”

A key underlying principle of the new guidelines is the understanding that “race is a heterogeneous social construct, and that in research, social and structural forms of racism and/or bias” such as socioeconomic status, access to care, and environmental factors should be considered and explained when applicable to research findings.

“Recognizing that race is not a biological entity, but really a social construct, is an important approach to take,” Dr. Elkind said. “When reporting on race in studies, we have to move away from people assigning others a race or using race as a fixed entity that explains results or outcomes. Giving people the opportunity to self-identify their race is important. We must also understand that within any so-called racial group there are going to be a lot of differences, and using race as a catch-all fails to explain a lot of variability. Recognizing these issues as limitations in interpreting studies is important, so one doesn't come out with a statement about how a certain race or ethnic group has a certain outcome and leave it at that. One has to think about all the other factors that go into those differences, that relate to economic opportunities, educational opportunities, and many other factors beyond race.”

Neurology Editor-in-Chief José G. Merino, MD, FAAN, professor of neurology at Georgetown University, praised the Circulation guidelines and noted that Neurology is working on guidance of its own.

“In 2019, we added a group of Equity, Diversity, and Inclusion (EDI) associate editors, who help us look at all papers that address racial disparities and make sure that they are framed within the perspective of race as a social construct rather than a biological variable,” Dr. Merino said.

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“Many journals are taking this on, the issue of how to handle race and ethnicity from a research point of view. For example, we do see differences in the rates of dementia between Blacks and Whites, but thats not because of inherent biological differences but rather because of the way our society is set up, because of discrimination and systemic bias that exposes some people to more risk factors than others.”—DR. JOSÉ G. MERINO

“They will often conduct very lengthy reviews that explain the importance of the issue and tell the authors how to focus their scientific questions from this perspective. What we want to do with the guidelines we are now developing is to crystallize this guidance that we now provide individually to authors.”

Dr. Merino could not provide an exact timeline for the release of the new guidance, but said that they have been in development for some time and he hopes to release them within the next few months.

“Many journals are taking this on, the issue of how to handle race and ethnicity from a research point of view,” he said. “For example, we do see differences in the rates of dementia between Blacks and Whites, but that's not because of inherent biological differences but rather because of the way our society is set up, because of discrimination and systemic bias that exposes some people to more risk factors than others.”

Transitioning to more accurate, complete and appropriate ways of approaching racial and ethnic disparities in medical research and publishing will have many challenges, not least of which is the limitations of longitudinal collected years or even decades ago.

“So much of the data we have available to us comes from longstanding observational studies where people have been followed for many years, with information collected before people were paying attention to self-identified race or the limitations of using race as a fixed and biological construct,” said Dr. Elkind.

“These data sets may not have detailed socioeconomic or demographic data that would allow one to interpret findings beyond merely using one racial category or another. We can begin collecting that data now, but we may not be able to get the full results we're seeking for years to come. In the meantime, we need to acknowledge that the quality of the historical data on these issues we're interested in is limited when it comes to issues around race and ethnicity and other social and demographic factors.”

Editors of other neurology-focused journals also praised the Circulation guidelines and suggested they could serve as inspiration for their own publications.

“I was very impressed with the important points they made,” said Marc C. Patterson, MD, FAAN, FRACP, a professor of neurology, pediatrics and medical genetics, who serves as editor-in-chief of the Journal of Child Neurology. “I'll be taking a close look to see how we can apply this model to our own policies in a more systematic way than we have up until now.”

Dr. Patterson noted that given the nature of child neurology as a subspecialty, health disparities can mean that neurologists may not get to see some patients from underrepresented communities at all. “Many don't have access to appropriate care and may not even be diagnosed, let alone receive appropriate therapy and be able to participate in clinical trials,” he said.

“Our journal doesn't have a formal policy on these issues at the moment as Circulation does,” he continued, “but this has spurred me to think about how we lay things out more clearly and develop such a policy.”

The journal, Epilepsia, also does not have a formal policy like Circulation's, but Editor-in-chief Michael R. Sperling, MD, FAAN, the Baldwin Keyes Professor of Neurology, vice chair for research in neurology, and division chief for epilepsy at Thomas Jefferson University, said that he hopes to move forward with developing one.

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“Recognizing that race is not a biological entity, but really a social construct, is an important approach to take. When reporting on race in studies, we have to move away from people assigning others a race or using race as a fixed entity that explains results or outcomes.”—DR. MITCHELL ELKIND

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“Our journal doesnt have a formal policy on these issues at the moment as Circulation does, but this has spurred me to think about how we lay things out more clearly and develop such a policy.”—DR. MARC C. PATTERSON

“I think their approach [at Circulation] is very thoughtful and careful. It's a challenging area to tackle and there is a lot of room to make mistakes. It's very easy to confound some of the social determinants of health with other factors, when they are critical and often play a far greater role in outcomes than anything else.”