The Uncertain Road Ahead for Health Care After DEI Rollbacks

The removal of FDA guidance on clinical trial diversity and related anti–diversity, equity, and inclusion (DEI) actions may hinder progress toward equitable health care, impacting workforce diversity, patient outcomes, and research. | Image Credit: Roman Tiraspolsky - stock.adobe.com

From its roots in the Civil Rights Movement to its contemporary focus on intersectionality, the diversity, equity, and inclusion (DEI) movement in health care is facing a critical juncture following the FDA’s decision to remove diversity guidance for clinical trials from its website.¹

Historians link the DEI movement in the US to the 1960s Civil Rights Movement, which initially focused on dismantling racial inequalities in workplaces, schools, and communities after segregation was outlawed.² The focus shifted between the mid-1970s and the 1990s to multiculturalism and the achievements of various racial and ethnic minorities.

The US government published the Heckler Report in 1985 as a result of its attempt to investigate health inequities.³ The HHS secretary at the time, Otis Bowen, launched the Office of Minority Health a year later. For the following 25 years, states and local governments began to launch their own Offices of Minority Health to improve the health of racial and ethnic minority populations.

Organizations began to emphasize DEI programs by the early 2010s to ensure diverse groups were equally represented at all economic and social levels, placing greater accountability on government, corporations, and civil society.² The movement has since evolved to include gender, sexual orientation, religion, and country of origin, along with other identities.

Improving Health Care Outcomes Through DEI

Systemic inequalities plague the health care landscape across race, gender, geography, socioeconomic status, and education levels.³ These issues are systemic and largely result from policies like redlining in mortgage lending, transportation and housing policies, and criminal sentencing.⁴

Implementing DEI policies and training in health care has allowed providers to become more aware of the need to develop their cultural competency skills to adequately serve growing patient populations and health disparities among various populations.⁵ DEI-trained health care professionals have demonstrated positive impacts on patient outcomes, including improved treatment adherence, increased trust and engagement, and reduced costs. These trainings can boost team productivity by reducing conflict and improving patient experience.

In May, physicians joined lawmakers for a senate hearing led by the US Senate Committee on Health, Education, Labor, and Pensions (HELP).⁶ Hon. Laphonza Butler, US senator (D, California), applauded and urged the committee's "continued efforts to not only bolster the health care workforce but to use every tool to ensure that that workforce is diverse and equipped to provide unbiased, culturally competent care. Only then can we begin to change the course of our nation's current health care system.”

DEI training in health care settings offers numerous benefits, but it's equally crucial to foster diverse workforces.⁷ A physician workforce that reflects the patient population can lead to improved outcomes, particularly for marginalized groups. For example, underrepresented physicians are more likely to practice in underserved areas, increasing access to care. Research has also shown that health outcomes, such as infant mortality rates, can improve when physicians and patients share the same racial background. Furthermore, initiatives aimed at reducing health disparities among non-White, disabled, and lesbian, gay, bisexual, transgender, and queer plus (LGBTQ+) communities often have positive ripple effects, ultimately benefiting the broader population as a whole.

Despite the adoption of DEI programs, there are still many historical and current-day shortfalls. Clinical trial diversity is an area within health care that has made significant efforts to change, but it remains a problem.⁸ Valerie M. Harvey, MD, MPH, FAAD, founder and director of the Hampton Roads Center for Dermatology, stated that “reports indicate little progress in increasing racial and ethnic minority participation in clinical trials over the past three decades”.⁹

Integrating DEI into clinical trials means more than just ensuring a diverse population; it requires embedding this perspective throughout all clinical research areas.⁸ Harvey explained that representative clinical trials are crucial because they generate more comprehensive data, rebuild trust among potential participants, and broaden access to safe and effective treatments.⁹

Overall, DEI programs improve health care providers' understanding of their patients and patient outcomes, expand access to care for underserved populations, and can lead to stronger patient-provider communications and increased commitment to DEI from health care organizations.¹⁰

Potential Impacts and Reactions Under Removal

The FDA removed draft guidance on diversity in clinical trials from its website days after President Donald J. Trump issued an executive order (EO). This order curtailed DEI programs and prohibited federal recognition of gender identity apart from biological sex.¹

Anti-DEI groups have targeted both private and public sector institutions with lawsuits at the state and federal levels even before these recent decisions.¹¹ For example, in Khatibi v Hawkins, the plaintiffs argued the medical board of California violated their First Amendment rights, referring to Assembly Bill 241, which mandates physicians to complete training in implicit bias as continuing medical education.¹² The California court dismissed the case,¹² likely based on the overwhelming evidence revealing common negative biases held by health care providers toward Black patients and other racially and ethnically minoritized patients.¹¹ Despite this case and others, there were likely trends that showed anti-DEI efforts would spread to other health professional organizations.

The FDA’s move and Trump’s decisions could lead to racially and ethnically minoritized physicians leaving or being pushed out of the workforce, with potential for life-and-death situations for minority communities.¹¹ A survey of 118 health systems found health care organizations had twice the number of employees at risk of leaving if the workforce did not prioritize diversity and equity vs workforces that do.¹²

Health care workers who believe their workplace does not value employees from different backgrounds, compared with workers who do, leave their places of employment at rates that are up to 4 times higher. Security personnel, nurses, and physicians demonstrated a stronger intent to stay in their roles compared with other ancillary staff, and this intent was linked to their perceptions of diversity and equity within the workplace.¹³

“The recent DEI bans are an unfortunate turn backwards on decades of progress towards a more just, equitable society in the US,” Lilian G Bravo, PhD, RN, assistant professor at the University of Miami School of Nursing and Health Studies, author of “More DEI Bans Will Have Dire Side Effects for Public Health”, expressed to The American Journal of Managed Care^®.

Removing DEI programs minimizes the influence of social, economic, and cultural factors on how people access and receive medical care.¹⁴ Crucial discussions between doctors and patients can help to address elements shaped by the past that continue to cause persistent inequities that undermine the health of historically marginalized groups.

“The bans will have widespread implications—from increased barriers in recruiting a diverse health care workforce to declines in progress of precision medicine efforts. This matters because we risk exacerbating health disparities, limiting innovation, and ultimately harming the well-being of all communities,” Bravo stated.

With the sudden removal of the FDA draft guidance and Trump's EO, industry leaders and policymakers face uncertainty.¹ These decisions signal a change in the current administration's approach to diversity requirements in health care, which had previously been moving toward greater inclusivity.

References

1. Grossi G. FDA quietly removes draft guidance on diversity in clinical trials following executive order on DEI. AJMC^®. January 31, 2025. Accessed February 3, 2025. https://www.ajmc.com/view/fda-quietly-removes-draft-guidance-on-diversity-in-clinical-trials-following-executive-order-on-dei
2. Edmunds M, Lind D. Glossary of definitions and core concepts for diversity, equity, and inclusion (DEI). Academy Health. August 9, 2021. Accessed February 3, 2025. https://academyhealth.org/sites/default/files/publication/%5Bfield_date%3Acustom%3AY%5D-%5Bfield_date%3Acustom%3Am%5D/deiglossary_nov_2021_1.pdf
3. Alper J, Taffe R, and Martinez RM. Exploring diversity, equity, inclusion, and health equity commitments and approaches by health organization c-suites: proceedings of a workshop. NationalAcademies Press;2024. Accessed February 5, 2025. https://www.ncbi.nlm.nih.gov/books/NBK603460/
4. Santoro C. The health-related consequences of redlining. AJMC. October 3, 2024. Accessed February 5, 2025. https://www.ajmc.com/view/the-health-related-consequences-of-redlining
5. How DEI training in health care can improve patient outcomes. Regis College. May 4, 2023. Accessed February 3, 2025. https://online.regiscollege.edu/blog/dei-training-in-health-care/
6. Grossi G. Panel addresses miniority physician shortage, maternal health at senate committee hearing. AJMC. May 15, 2024. Accessed February 6, 2025. https://www.ajmc.com/view/panel-addresses-minority-physician-shortage-maternal-health-at-senate-committee-hearing
7. Smith L. Why diversifying the health professions matters for everyone. Robert Wood Johnson Foundation. September 19, 2024. Accessed February 3, 2025. https://www.rwjf.org/en/insights/blog/2024/09/why-diversifying-the-health-professions-matters-for-everyone.html
8. Snopko A, Johri C, Marsili M. Integrating diversity, equity, & inclusion (DEI) throughout clinical trials. Vynamic. Accessed February 3, 2025. https://vynamic.com/insights/integrating-diversity-equity-inclusion-throughout-clinical-trials/
9. McCormick B. Expert highlights need for greater diversity in dermatology clinical trials. AJMC®. September 17, 2024. Accessed February 3, 2025. https://www.ajmc.com/view/expert-highlights-need-for-greater-diversity-in-dermatology-clinical-trials
10. 6 benefits of a diverse, equitable and inclusive culture in healthcare. ChenMed. January 16, 2024. Accessed February 3, 2025. https://www.chenmed.com/blog/6-benefits-diverse-equitable-and-inclusive-culture-healthcare
11. Blackstock OJ, Isom JE, Legha RK. Health care is the new battlefront for anti-DEI attacks. PLOS Glob Public Health. 2024(4):e0003131. doi:10.1371/journal.pgph.0003131
12. Berry TA, Khoury A. Khatibi v. Hawkins. Cato Institute. August 30, 2024. Accessed February 4, 2025. https://www.cato.org/legal-briefs/khatibi-v-hawkins
13. Press Ganey study uncovers impact of diversity and equity on retention. News release. Press Ganey. October 27, 2021. Accessed February 4, 2025. https://www.pressganey.com/news/press-ganey-study-uncovers-impact-of-diversity-and-equity-on-retention/
14. Tweedy D. The past is never fully past: a case for DEI in medical education. Association of American Medical Colleges. September 18, 2024. Accessed February 5, 2025. https://www.aamc.org/news/past-never-fully-past-case-dei-medical-education