Seven Strategies to Integrate Equity within Translational Research in Neurology

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Seven Strategies to Integrate Equity within Translational Research in Neurology

Karlo J. Lizarraga MD, MS, Tirisham Gyang MD, Richard T. Benson MD, PhD, Gretchen L. Birbeck MD, MPH, DTMH, Karen C. Johnston MD, MS, Walter Royal III MD, Ralph L. Sacco MD, MS, Benjamin Segal MD, Barbara G. Vickrey MD, MPH, Robert C. Griggs MD, Robert G. Holloway MD, MPH

First published: 25 January 2024

https://doi.org/10.1002/ana.26873

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Abstract

The rapidly accelerating translation of biomedical advances is leading to revolutionary therapies that are often inaccessible to historically marginalized populations. We identified and synthesized recent guidelines and statements to propose 7 strategies to integrate equity within translational research in neurology: (1) learn history; (2) learn about upstream forces; (3) diversify and liberate; (4) change narratives and adopt best communication practices; (5) study social drivers of health and lived experiences; (6) leverage health technologies; and (7) build, sustain, and lead culturally humble teams. We propose that equity should be a major goal of translational research, equally important as safety and efficacy. ANN NEUROL 2024

The pace of translational biomedical and technological advances to treat neurological conditions has been astonishing. Life-changing and curative therapies are now available for conditions previously considered incapacitating and lethal. Regrettably, the burden of neurological disease continues to increase as these therapies are often inaccessible to people historically marginalized due to their race, ethnicity, age, sex, gender, culture, or abilities.^1-3 Structural and systemic inequities that exist at upstream sociopolitical and economic levels have also shaped, infiltrated, and compromised the scientific rigor and integrity prioritized by the translational research enterprise in neurology. Translational research grows from preclinical study design to clinical trials to therapy dissemination and implementation. In a similar fashion, avoidable research inequities begin at the design phase, and inadvertently grow to become health care disparities when reaching the dissemination and implementation phases (Fig 1). Inequitable research environments further facilitate this process, which could at least partially explain why health care disparities continue to grow despite significant efforts at the dissemination and implementation phases. In this article, we synthesized recent guidelines and statements to propose 7 actionable strategies to integrate equity within translational research in neurology (Table 1). We use race and ethnicity as the main examples, but these strategies could be applicable to other axes of diversity in an intersectional manner.

FIGURE 1

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Schematic representation of equity, safety, and efficacy during translational research and health care. Equity is considered a major goal of health care, and it is usually addressed after implementation and dissemination of therapies developed during translational research. Safety and efficacy are considered major goals of translational research, and they are usually achieved through scientific rigor and integrity during earlier phases of translational research. Systemic and structural inequities affect all phases of translational research, and they could exacerbate existing health care disparities. Thus, equity could also be considered a major goal of translational research, equally important as safety and efficacy. (Adapted from the National Center for Advancing Translational Sciences website: https://ncats.nih.gov/translation/spectrum.)

Table 1. Seven Strategies to Integrate Equity within Translational Research in Neurology

Strategies	Recommendations
1. Learn history	–Learn about craniometry studies –Learn about “race corrections”
2. Learn about upstream forces	–Learn about the cost of translational research –Learn how research funding areas are prioritized in the United States and advocate for support for research to inform and drive health policies that reduce health disparities –Consider, validate, and promote potentially less expensive research methods
3. Diversify and liberate	–Be inclusive, authentic, transparent, deliberate, and accountable –Move from ethnographic authority to shared power and practices that prioritize science –Share roles of researcher and research participant –Include an “equity focus” or an “equity and implementation plan” during study design
4. Change narratives and adopt best communication practices	–Use a culturally humble communication style –Spell names correctly –Ask for correct name pronunciations –Ask for correct pronouns –Use language that promotes equity
5. Study social drivers of health and lived experiences	–Consider measuring and analyzing relevant social drivers of health –Consider using qualitative interviews or predefined scales to measure and analyze the lived experiences of racism, perceived discrimination, and trust in research –Consider how social oppression has shaped our identities as researchers and research participants
6. Leverage health technologies	–Consider innovative and accessible health technologies –Monitor for and prevent unintended consequences of technology dissemination, including exacerbation of existing inequities
7. Build, sustain, and lead culturally humble teams	–Welcome everyone as a potential team member –Measure and train yourself, and your team members, in implicit bias and shared leadership skills –Consider participating and contributing to programs that specifically address workforce diversity

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