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  • Confronting the Legacy of Medical Misinformation - Let's Start With Race-Based Medicine

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    By Keisha Bentley-Edwards, Ph.D., Olanrewaju Adisa, Kennedy Ruff, and Catherine Kiplagat
    Samuel DuBois Cook Center Health Equity Working Group
    Posted May 30, 2024


    Authors, clockwise from top left: Dr. Keisha Bentley-Edwards, Catherine Kiplagat, Olanrewaju Adisa and Kennedy Ruff

    Throughout the COVID-19 pandemic, the health community was alerted to the proliferation of medical misinformation, particularly messages related to vaccines and treatment. For me, Dr. Bentley-Edwards, I became alerted to the dangers of medical misinformation in the early 1990’s from my father’s annual physical. My father’s new primary care provider (PCP) asked him what medication he was taking to control his hypertension. My father was confused. He wasn’t taking antihypertensive medication because his blood pressure was normal. However, his medical records revealed his blood pressure was well above the hypertension level cut-offs for several years. In past years, my father’s prior doctors had been telling him that his blood pressure was “high-normal” or that his levels were “normal for a Black man.” This misinformation allowed his blood pressure to be uncontrolled for an unnecessarily long time, heightening his risk for cardiovascular disease, stroke, and kidney disease. Upon learning all of this, my father’s new PCP, a young Black doctor, immediately prescribed him the appropriate medication, and he has taken care of his health since then.


    Loud and Wrong

    Dr. Keisha Bentley-Edwards and her fatherHypertension is often called the “silent killer,” but in this case, my father’s physicians’ reliance on race-based medicine to guide diagnosis and care rang loud and wrong. Race-based medicine relies upon biological distinctions between racial groups that are integrated into practice, training, and health algorithms and represents a systemic form of medical misinformation. As such, medical misinformation cannot be reduced to error-filled social media campaigns. As researchers, providers, and other members of the health community, we must reflect on how we generate, share, and sustain medical misinformation so that we can bring it to an end. To be clear, race-based medicine is not to be confused with personalized care or precision medicine.

    In the past, providers were taught to provide Black patients with a specific class of antihypertensive medication, narrowing their medication options early in their treatment course from those that may be more effective and reduce the risk for progression to chronic kidney disease.  These race-based assumptions do not exist in a vacuum. They inform the development of critical assessments and risk predictors. This history calls into question the goal of algorithms to save time, money, or lives. If the goal of an algorithm is to save lives and reduce health disparities, an over-reliance on race-based medicine can get in the way of its success.

    Important Steps

    Prior to 2021, kidney function was determined by a calculation that considered multiple biological indicators and included a coefficient accounting for patient race. The use of this formula systematically overestimated kidney function for Black patients, reduced the chances of patients meeting the threshold for end-stage kidney disease, and increased the wait times for Black patients to get on the transplant list or receive other appropriate care such as dialysis. However, the National Kidney Foundation and the American Society of Nephrology revised the eGFR recommendations to exclude Black race as a biological factor. In 2023, researchers  estimated that roughly 70,000 Black adults could move higher up in the matching system and decrease their wait time for a kidney transplant as a result of the improved algorithm. As evidenced by the pre-2021 eGFR recommendations and the lack of evidence supporting race-based antihypertensive treatment, race-based medicine is not the solution. The Organ Procurement and Transplantation Network took an important step to push policy that has helped nearly 2,500 Black patients receive a kidney who would not have if the old algorithm were still in use. More needs to be done to improve the health of Black Americans.

    Race vs. Genetic Ancestry

    Eliminating confusion by understanding race versus genetic ancestry is fundamental to addressing and redressing health inequities. Although structural racism is the most undeniable factor of disparate outcomes for Black patients with hypertension and kidney disease, ancestral genetic variation can partially explain differential experiences with kidney disease.  APOL1 is a genetic marker present in all people; however, certain Black Americans (up to 10-15%) inherited a genetic high-risk allele combination (G1 and G2) that has evolved over 10,000 years beyond the original function in protection against African sleeping sickness (trypanosomiasis). This combination correlates with an increased risk of kidney diseases like kidney failure. Similar to sickle cell disease, there is an increased incidence of these alleles where the disease is prevalent (e.g., West Africa).  APOL1-mediated kidney disease (AMKD) may accelerate the progression to kidney failure, but it is not the single cause of progression. Even with the help of ancestry studies, physicians must resist jumping to conclusions about how to use these findings to serve their patients.

    Thoughtful Engagement

    Studies about AMKD hold promise for personalized and genetically informed care for millions of Americans in the wake of precision medicine. Up against an extensive history of medical untrustworthiness by the U.S. health care and research systems, my team and I have argued that we must thoughtfully engage and include communities impacted by health disparities throughout the research enterprise.

    Discussions of structural racism and medical misinformation do not diminish the relevance of personal agency and health behaviors. Yet, our personal agency is informed by the options that are available to us. When our choices are clouded by misinformation, so is our personal agency. Although I can’t decisively say that my father’s eventual progression to chronic kidney disease was the result of medical racism and structural racism, I can confidently say that it was contributing factor.

    In the Health Equity Working Group for the Samuel DuBois Cook Center on Social Equity at Duke University, we study the causes and consequences of racism and sociocultural indicators on health outcomes. Does race matter in understanding health disparities? Yes, but we argue that when you recognize race as a social construct, you realize that social conditions should be an integral area of study for resolving racial health disparities. In our NIMHD-funded project, we examined Black people’s religiosity for its effect on cardiovascular disease risk factors, including hypertension. Our findings showed that Black religious and cultural experiences in America are diverse and important in understanding cardiovascular disease risks. Additionally, we are members of the recently formed ERASE-KD consortium (Eliminating Racism And Structural inEquities in Kidney Disease) dedicated to mitigating structural racism’s impact on kidney disease.

    We, as members of the health community, must have the humility to recognize that we are not immune to the allure of medical misinformation, even when it is rooted in systemic racism. How this form of racism is reproduced and disseminated as medical misinformation is neither isolated nor benign.

    Keisha Bentley-Edwards, Ph.D., is an associate professor of medicine, Co-Director of the Center for Equity in Research, and associate director of research for the Samuel DuBois Cook Center (Cook Center) on Social Equity at Duke University.

    Olanrewaju Adisa is a medical student at Duke University.

    Kennedy Ruff is an associate in research at the Cook Center and graduate student at North Carolina State University’s Clinical Mental Health Counseling Program.

    Catherine Kiplagat is a 2nd year undergraduate student at Duke University.

    Dr. Bentley-Edwards leads the Cook Center’s Health Equity Working Group, and Adisa, Ruff, and Kiplagat are all members.

  • Moving From Willingness to Vaccination Uptake: Strategies for Promoting Health Through Vaccines

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    By Deborah E. Linares, Ph.D., M.A. and Vanessa Marshall, Ph.D.
    National Institute on Minority Health and Health Disparities (NIMHD)
    Posted March 7, 2024

    Moving from willingness (to take a vaccine) to vaccination uptake remains a public health challenge, because there are multiple factors driving vaccine hesitancy. Vaccine hesitancy occurs when there is a reluctance to receive a vaccine despite its availability. Developing strategies to build trust with people from racial and ethnic minority communities and the medical community are essential to effectively promoting health.

    NIMHD supports research in this area to eliminate health disparities and incorporate strategies to address:

    • Social determinants of health that create barriers to accessing vaccines.
    • Sustainable collaborations in communities disproportionately affected by illnesses.

    NIMHD continues to invest in community-engaged research among populations experiencing health disparities to promote wellness and protect health through vaccines. We held an NIH extramurally funded grantee meeting on COVID-19 vaccine uptake in 2022 where several insights were shared. In this blog post, we share these insights and a brief overview of how applying knowledge, steadfastness, and collaboration can help promote vaccine uptake. While we know some people are reluctant and may be unsure about being vaccinated, hopefully this blog will help to inform them.

    What are the benefits of vaccines?

    Vaccines provide multiple benefits for the prevention or reduction of disease, serious illness, or death while also protecting against disease transmission. The Centers for Disease Control and Prevention (CDC) recommends vaccinations across the lifespan for protection against many diseases.

    For example, influenza or the flu is an infection of the respiratory system that can cause serious complications for children ages 2 or younger, pregnant people, adults over age 65, and people with chronic health conditions. The flu causes more than 400,000 hospital stays and 50,000 deaths each year in the United States, with the highest rates among Black and African American and American Indian and Alaska Native (AI/AN) populations. Yet less than 43% of Latino and Hispanic, AI/AN, and Black and African American adults and less than 54% of Latino and Hispanic and Black and African American children receive the flu vaccine.

    U.S. Food and Drug Administration-approved vaccines are critical for reducing infection rates and slowing the spread of infectious diseases. Despite the CDC’s recommendations and the overwhelming benefits of vaccination, disparities exist in the acceptance and uptake of vaccines (e.g., COVID-19, flu, pneumococcal, hepatitis B, pertussis, measles, and human papilloma virus) among populations experiencing health disparities. These disparities also occur for many routine immunizations for all ages.

    What drives vaccine hesitancy?

    The COVID-19 pandemic showed us that vaccine hesitancy is complex; context specific; and changes across time, place, and type of vaccine, as well as in the timely completion of a vaccine series (i.e., receiving all vaccines within a series). It can also be influenced by factors such as complacency, convenience, and confidence.

    Pathways of vaccine hesitancy vary and are subject to change over time. For instance, parental vaccine hesitancy for childhood vaccines is growing within the United States for diseases such as measles, despite measles being declared eliminated in the United States in 2000 due to a prior robust vaccination program.

    Racial and ethnic minority populations may be more likely to experience skepticism about the trustworthiness of the source(s) of vaccination recommendations due to prior experiences of marginalization and mistreatment within the medical community. Cultural and religious factors may also influence vaccine uptake and low risk perceptions of disease.

    Other factors such as limited knowledge, limited information on vaccines, concerns about perceived safety, parental perceptions of vaccine safety, public uncertainty, low health literacy, considering immunization a low priority, and exposure to misinformation or disinformation via social media channels play a role in vaccine uptake.

    Getting protected: What you need to know

    Winter months are critical times for vaccines, especially COVID-19, flu, and respiratory syncytial virus (RSV). People may also be behind on other vaccines due to health care closures and accessibility issues during COVID-19. So how can we encourage the people around us to get vaccinated? Community-based organizations and health care providers can do the following:

    • Engage others in meaningful, authentic communication when you discuss vaccines.
    • Identify and address the needs, preferences, and concerns of a group in discussions about vaccines.
    • Provide targeted messaging that meets people where they are, in terms of their decision to vaccinate and the places where they receive care.
    • Give understandable communication that comes from a trusted source (e.g., health care provider or community leader).
    • Provide different modalities for messaging about vaccines (e.g., text message, face-to-face interactions, social media, videos).

    These strategies can be helpful to increase vaccine uptake within your community. In addition to getting vaccinated, please continue to use evidence-based mitigation strategies to reduce the risk of spreading infectious diseases, such as mask wearing and frequent hand washing. Persistence to these strategies and drawing on community-based collaborations can help promote health among populations experiencing health disparities.

    On-going NIMHD vaccine related funding opportunities and initiatives:

    Want to know more about how NIH is addressing vaccine hesitancy, uptake, and implementation among populations experiencing health disparities in the United States and its territories?

    To locate vaccines near you: www.vaccines.gov

    Deborah Linares, Ph.D., M.A., is a Health Scientist Administrator (Program Official) at NIMHD. She focuses on promoting research to understand behavioral and interpersonal factors contributing to resilience and susceptibility to adverse health conditions among disadvantaged and underserved populations. She provides expertise in conducting minority health and health disparities research in the areas of behavioral health, women’s health, child development, healthy aging, eHealth, and cancer control.

    Vanessa Marshall, Ph.D., is a Social Behavioral Scientist Administrator (Program Officer) in the Division of Community Health and Population Science at NIMHD. She manages and conducts research to advance public health prevention science. Her research focuses on improving health outcomes and promoting research to understand and address the multilevel determinants of factors that play a role in health disparities. She provides expertise in key research areas including minority health, health disparities, health services research, community engaged research, clinical trials, public health, quality improvement, implementation, dissemination and evaluation.

  • New Policy Paves Way to Scientific Discovery in a Data-Rich World

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    By Paul Cotton, Ph.D., RDN
    National Institute on Minority Health and Health Disparities
    Posted Feb. 27, 2024

    Insights Into the 2023 NIH Data Management and Sharing Policy

    In a significant development for the scientific community, the National Institutes of Health (NIH) unveiled its Data Management and Sharing (DMS) policy. The DMS policy represents a major step forward in promoting transparency, reproducibility, and collaboration within the realm of biomedical research. By emphasizing responsible and efficient sharing of research data, the NIH aims to maximize the impact of its investments and foster scientific discoveries that benefit society at large. This blog post explores the key elements and implications of the NIH's groundbreaking policy.

    Enhancing Data Management Practices

    The DMS policy places a strong emphasis on robust data management practices throughout the research lifecycle, requiring grant applicants to submit a detailed Data Management and Sharing Plan (DMSP). The DMSP should outline how prospective grantees will handle, store, and share research data generated throughout the duration of NIH-funded projects and beyond. This proactive approach ensures that data management is considered an integral part of the research process from the outset, thereby minimizing the risk of data loss or mismanagement.

    Promoting Data Sharing and Accessibility

    A Black woman, a White woman and a Black man look at something the man is pointing to on a computer screen

    One of the primary objectives of the NIH's DMS policy is to enhance data sharing and accessibility. Under the new guidelines, researchers are expected to make their data widely available to the scientific community, enabling other researchers to validate findings, conduct secondary analyses, and generate new insights. By fostering a culture of data sharing, the NIH aims to accelerate scientific progress, encourage collaborations, and avoid unnecessary duplication of efforts.

    The new policy facilitates data sharing by encouraging the use of data repositories that comply with FAIR (Findable, Accessible, Interoperable, and Reusable) principles. FAIR ensures that research data is easily discoverable, accessible to all interested parties, and effectively utilized across different platforms and disciplines. Moreover, the NIH requires that data be shared in a timely manner, allowing other researchers to benefit from and build upon existing knowledge.

    Protecting Privacy and Confidentiality

    While promoting data sharing, the NIH also recognizes the importance of protecting individual privacy and confidential information. The data management and sharing policy emphasizes the need for researchers to handle sensitive data responsibly and take appropriate measures to safeguard participant privacy. It encourages the use of de-identified data whenever possible, ensuring that personal information remains protected while still enabling valuable research insights.

    Training and Compliance

    Recognizing the need to support researchers in implementing the new policy, the NIH is committed to providing training, resources, and guidance on data management and sharing practices. Our commitment helps equip researchers with the necessary knowledge and skills to adhere to the policy requirements. Additionally, compliance with the new data management and sharing policy will be monitored as part of the NIH's existing grant oversight and evaluation processes.

    Conclusion

    The NIH's new Data Management and Sharing Policy marks a significant milestone in advancing scientific collaboration and transparency. By promoting responsible data management and sharing practices, the policy aims to accelerate scientific discoveries, maximize the impact of research investments, and ultimately improve human health. While fostering collaboration and accessibility, it also recognizes the importance of privacy protection and compliance with ethical guidelines.

    The NIH's commitment to supporting researchers through training and resources underscores our dedication to facilitating the implementation of this progressive policy. Stay tuned for future posts, where we will explore specific Data Management and Sharing Policy updates, share success stories, and provide valuable insights to help you navigate the evolving landscape of grant funding. Together, let us embark on this journey of clarity and collaboration as we strive to make a lasting impact in the fields of health and research as the scientific community embraces this new era of data sharing, exciting opportunities for breakthroughs and collaborations lie ahead.

    Paul Cotton, Ph.D., RDN, is the Director of NIMHD’s Office of Extramural Research Activities. He advises on and manages science policy and program activities related to extramural administrative management, scientific management, and scientific initiatives, and is responsible for the development and implementation of policies for managing research awards and overseeing research training policies, as well as supporting diversity, equity, and inclusion research initiatives.