Category Scientific Research Show all
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How Ethical AI Is Advancing HPV Vaccine Uptake and Dental Health Disparities Research
By Lynette Hammond Gerido, Ph.D., M.P.H., M.B.A; Scott Emory Moore, Ph.D., RN, APRN; Hamid Reza Kohan Ghadr, Ph.D.; and Preeti Pushpalata Zanwar, Ph.D., M.P.H., M.S.
Posted Nov. 1, 2024Addressing health disparities requires innovative approaches that blend expertise across disciplines. Through the Science Collaborative for Health Disparities and Artificial Intelligence Bias Reduction (ScHARe), NIH’s collaborative, cloud-based platform for population sciences research, interdisciplinary research teams leverage advanced data science methodologies and artificial intelligence (AI) to uncover how social determinants of health contribute to health inequities and to identify opportunities for data-driven policy interventions.
Each team is challenged to use best practices to make their analysis explainable and to mitigate the “black box of AI,” such as through:
- Model cards
- Concise documents that summarize how an AI model works
- Its intended use
- Possible limitations
These teams, co-led by experts in data science and health disparities research, represent a unique convergence of disciplines focused on solving public health challenges using advanced computational tools.
ScHARe research teams exemplify the future of health disparities research with members from diverse backgrounds—from undergraduate students to senior faculty, as well as scientists and practitioners from academic and industry settings collectively bringing multidisciplinary expertise at varying career levels. These multigenerational cross-functional research teams symbolize ScHARe’s success in fostering a paradigm shift in health disparities research to use big data and to train underrepresented populations, including women, in biomedical data science.
Using Big Data to Understand HPV Vaccine Uptake Disparities
One of the ScHARe teams, co-led by Dr. Lynette Hammond Gerido and Dr. Scott Emory Moore, focuses on disparities in HPV vaccine uptake among marginalized populations. By analyzing datasets such as the National Immunization Surveys, the team has used data-driven techniques to examine the distribution of vaccine access before and after 2020, when the COVID-19 pandemic began.
Their goal is to identify the social determinants influencing disparities in HPV vaccine reach and to better understand the individual factors that may underpin those disparities. The insights generated may inform policy aimed at reducing disparities and promoting equitable access to essential, relatively low-cost, preventive health care services.
Through their advanced analysis, the team aims to uncover patterns of inequality, offering a better understanding of how social, economic, and biological factors interplay to contribute to health care disparities. Their research will ultimately contribute to more informed public health strategies, with the potential to significantly reduce inequities in HPV preventive care and treatment impacting cervical cancer outcomes.
Using Machine Learning to Understand Dental Health Disparities
Another ScHARe team, co-led by Dr. Hamid Reza Kohan Ghadr and Dr. Preeti Pushpalata Zanwar, addresses disparities in dental care access, an issue that worsened during the COVID-19 pandemic. Their research utilizes the Medical Expenditure Panel Survey, a nationally representative dataset that includes information on health care use, costs, and insurance coverage.
Through the application of advanced machine learning techniques, their research aims to identify key determinants of dental care access, such as out-of-pocket costs, preventive health behaviors, and socioeconomic factors. This work is particularly relevant given the pronounced disparities in dental care access in the United States, disproportionately affecting marginalized communities.
In addition to exploring these disparities, the team also is addressing potential biases in AI models and their implications for health equity. Their analysis will contribute to the ongoing discourse on bias mitigation in AI, particularly in the context of health disparities, and they aim to offer methodological guidance on applying machine learning to public health data regarding oral health to inform equitable health care policies.
The ScHARe platform is a critical enabler of these research efforts. It provides access to over 260 health disparities and social determinants of health (SDOH) datasets, along with cloud-based computational tools that support large-scale, interdisciplinary analyses.
The collaborative efforts of these research teams highlight the transformative potential of combining AI, big data, and multidisciplinary expertise to address public health challenges. As their projects progress, they aim to generate evidence that will guide policy and practice, contributing to the broader goal of promoting health equity and reducing disparities across diverse populations.
Lynette Hammond Gerido, Ph.D., M.P.H., M.B.A., is an information scientist and assistant professor in the Department of Bioethics at the Case Western Reserve University School of Medicine. She is also scientific director of the Department of Bioethics’ Center for Community Health ANd Genomic Equity (CHANGE) and a Population and Cancer Prevention Program member at the Case Comprehensive Cancer Center. She partners with communities in her research and uses population data to understand trends in ethical, legal, and social implications of clinical research, public health campaigns, and consumer health technologies.
Scott Emory Moore, Ph.D., RN, APRN, AGPCNP-BC, FAAN, is an assistant professor at the Frances Payne Bolton School of Nursing at Case Western Reserve University. His research centers on the biological, psychological, and social factors that influence health outcomes among LGBTQ+ adults. His nursing experience includes emergency and trauma nursing, acute and chronic stroke care, complex chronic diseases, and care for LGBTQ+ and other marginalized populations.
Hamid Reza Kohan Ghadr, Ph.D., is a molecular and computational biologist and a healthcare data scientist serving as a principal scientific consultant at Akna Health. He previously served as an assistant professor at the Michigan State University College of Human Medicine. He has expertise in AI, cloud computing, and bioinformatics and his research advances biomedical innovation by applying cutting-edge technologies to addressing health care challenges.
Preeti Pushpalata Zanwar, Ph.D., M.P.H., M.S., is a health economist and health services researcher who serves as a lecturer in Applied Health Economics & Outcomes Research and Health Policy at Thomas Jefferson University. She researches disparities in preventive health care access, socioeconomic pathways to cognitive aging, inequities in vaccine uptake, outcomes of viral infections, and modelling differences in health care costs of multimorbidity.
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Immigrant Health is Interpersonal
By Amanda Venta, Ph.D.
University of Houston
Posted Sept. 9, 2024Waves of Latinx immigration to the United States have changed in recent decades, and our scientific literature is only beginning to catch up. Regional violence and unrest in the Northern Triangle of Central America (i.e., El Salvador, Honduras, and Guatemala) have pushed families to seek asylum in the U.S. Simultaneously, we have seen growth in children traveling without a guardian (i.e., unaccompanied immigrant minors) from the same region.
Health care professionals now find large numbers of Latinx immigrant youth and families in their waiting rooms, yet relatively little published research on their mental health experiences and clinical needs exist. Latinxs, in general, are underrepresented in published research. First generation-asylum-seekers from Central America, while characterizing recent waves of immigrants and rapidly increasing their demographic share in the U.S., have been practically invisible to the scientific literature until recently.
It was during these shifts that I began working with the Office of Refugee Resettlement (ORR) to provide psychological services for unaccompanied immigrant minors. I received referrals for youth who were displaying psychological symptoms while living in ORR-approved facilities.
High-Stakes Health Consequences
Across hundreds of cases, the prototypic experience is that of a 16- or 17-year-old boy from the Northern Triangle. We typically see a child who is left in his home country early in life by his father, who migrated to the U.S. to establish a foothold. Shortly thereafter, the child’s mother also migrates North in search of better opportunities or to flee growing regional danger. The child grows up with several different caregivers, coping in various ways with separation from his parents and surviving adversities associated with poverty, violence, and the absence of his primary caregivers.
In late adolescence, the child decides to make the journey to the U.S. himself—sometimes with his parents’ blessing and sometimes without. Though escape from gang and cartel threats, poverty, and educational aspirations were often relevant, the emotionally salient motivation is almost always an interpersonal one—a view, idealized as it may be—that being reunited with mom or dad would solve the many problems this child has survived during the previous 10 to 12 years. As a clinical scientist with training in child and family psychology and attachment theory, I can no longer see immigration as a partisan, political issue; I see it as an interpersonal issue—a family issue with high-stakes health consequences.
Over the last 10 years, the bulk of my research, including a three-year longitudinal study of recently immigrated Latinx youth and an ongoing, four-year longitudinal study of Latinx asylum-seeking adults, have reinforced this message: the health and well-being of immigrants depends upon their interpersonal ties.
Trauma exposure is nearly universal in the child, adolescent, and adult Latinx asylum-seekers we have interviewed, and clinically significant symptoms of posttraumatic stress disorder (PTSD) are the norm, with 60% of our samples showing clinical elevations. This health disparity is jarring and deserving of clinical attention, but it is not the whole picture. Indeed, our work documents that interpersonal risks like family separation due to migration are prevalent and tied to interpersonal functioning and mental health in youth and young adulthood.
More broadly, the interpersonal experience of failed belonging among young adult Latinx immigrants is a significant predictor of suicide-related thoughts and behaviors. Discrimination, in youth and adults, demonstrates significant relations to mental health problems. Our work repeatedly shows that these interpersonal risks are potently connected to immigrant health, even in the context of surviving trauma, migration, and settlement in a new country.
Sticking Together, Making It Through, and Thriving
At the same time, the immigrant context is full of evidence of resilience, and interpersonal factors play a significant role on this side of the coin as well. Our work with Latinx youth and young adults demonstrates that family relationships built on trust and communication are associated with reduced mental health problems and increased prosocial behavior and resilience. Even in families who experience separation, secure relationships can persist and continue to exert positive effects on mental health.
Familismo, a Latinx cultural value emphasizing the primacy of the family, acts as a protective factor in our research on suicide-related thoughts and behaviors and underlies the provision of social support in immigrant families. Above and beyond the family context, young migrants’ perceived connections to school and peer relationships relate significantly to their mental health.
Our work now includes clinical encounters with hundreds of immigrant minors and face-to-face and online data collection with thousands of Latinx children, adolescents, and adults. In many of these cases, the atrocities they have survived take center stage. Their experiences are unfathomable to many of us, and their suffering— leaving their children, losing their parents, and experiencing many forms of trauma—is palpable. And yet, they speak strongly of another story—one of resilience, of sticking together, of making it through, and of thriving under circumstances they never expected.
Our research has coalesced on the notion that this resilience hinges on the interpersonal strengths and ties that Latinx immigrants carry with them along the journey. While some of these are tangible—like available caregivers with stable documentation status—most of them are felt—mental representations of caregivers as loving and reliable despite separation and perceptions of belonging at home, school, and in the U.S. that can withstand political realities about documentation status and immigration court.
We can all learn from these examples.
We thrive together.
Amanda Venta, Ph.D., is a Latina bilingual associate professor at the University of Houston. Her research focuses on the development of psychopathology in youth, with expertise in how family relationships relate to risk and resilience. Over the last decade, she has worked clinically and centered her research on the experiences of immigrant youth and families from Central America with multiple awards from NIMHD (1R01MD016897-01A1 and R15MD014302-01). She serves on the editorial boards of Attachment and Human Development, Research on Child and Adolescent Psychopathology, the Journal of Clinical Child and Adolescent Psychology, and she is the associate editor of Behaviour Research and Therapy. Together, she has published 135+ scientific papers, chapters, and books.
Disclaimer: NIMHD encourages the use of common terminology in collecting and reporting data, and this includes the standardization of racial and ethnic terms as identified in the revised OMB Statistical Policy Directive No. 15 for federal statistics and administrative reporting.
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Breaking Barriers: Empowering Black Young Adults to Embrace COVID-19 Vaccination
By Lisa Hightow-Weidman, M.D., M.P.H., and Henna Budhwani, Ph.D., M.P.H.
Florida State University (FSU) College of Nursing
Posted Aug. 15, 2024The COVID-19 pandemic was a frightening and uncertain time. Schools closed, office work went virtual, and countries shut their borders. In the early days of the pandemic, hospitals were overrun, and over six million people died; of our fallen, 13% were African American or Black. In 2020, the largest increase in deaths was among American Indian and Alaska Native (36.7%) and Black (29.7%) populations. Collectively, we held our breath, waiting for a scientific miracle.
To respond to this global threat, an internationally coordinated effort was made to develop an effective COVID-19 vaccine. In 2020, the United States Food and Drug Administration (FDA) issued emergency use authorizations (EUA) for the Pfizer-BioNTech vaccine and the Moderna vaccine. Both vaccines were mRNA-based. In 2021, the FDA issued an EUA for the Jassen vaccine, which leveraged the adenovirus vector. Historically, the vaccine development process takes about 11 years; thus, the expeditious release of three COVID-19 vaccines built using two different technologies caused skepticism, fueling hesitancy and an unwillingness to accept the vaccine.
Understanding the Assignment
Even before the approval of COVID-19 vaccines, misinformation and false narratives about them flooded social media, leading to widespread hesitancy. Black young adults, especially those in the southern United States, were particularly hesitant, with early estimates showing only 42% were likely to accept the vaccine. This skepticism and rampant misinformation, coupled with systemic health care barriers that harm Black populations, made it imperative to find effective ways to reach and engage Black young adults living in southern states expeditiously.
The National Institute on Minority Health and Health Disparities (NIMHD), as the young people would say, understood the assignment. They released a funding announcement to promote the COVID-19 vaccine to minority populations. We saw this opportunity and knew we had to respond with all we had. Bet! We live in the southern United States, and this was our chance to contribute to the well-being of our communities. We knew time was of the essence, so we developed a proposal to adapt the “Tough Talks” digital health intervention that engaged young adults to promote HIV-related health into Tough Talks for COVID-19 or TT-C.
The Tough Talks for COVID-19 Intervention Study
To build trust, we had to be innovative in our approaches while also being completely real about the quickly changing landscape of COVID-19. And so, we pulled together a team of diverse scholars and community partners to inform the entire project. We took guidance and direction from experts: both leaders at minority-serving institutions and Black young adults living in southern states. We listened, we learned, and then we created the TT-C digital health interventions featuring:
- Testaments: Black young adults living in southern states shared their personal experiences and reasons for getting vaccinated via real-world video-based digital stories.
- Interactive Activities: We included choose-your-own-adventure games and engaging activities that explained complex biomedical concepts in relatable, youth-friendly ways.
- Non-Stigmatizing Messaging: Collaborating with our advisors, we crafted tailored, non-judgmental, and supportive messages that addressed common misconceptions and fears without alienating participants.
- Educational Content: We embedded comprehensive information about COVID-19 vaccines, including their safety and efficacy, and general preventative health tips, like proper handwashing techniques.
To evaluate the TT-C intervention, we conducted a randomized controlled trial (RCT) with 360 Black young adults aged 18-29 from Alabama, Georgia, and North Carolina who were unvaccinated or not fully vaccinated per current recommendations. Participants were recruited via social media. Once enrolled, participants were randomly assigned to either the TT-C or the control group. Self-reported data on vaccination and related constructs were collected at multiple points through 3-months post-randomization. Our primary outcome was COVID-19 vaccine uptake, verified by vaccine cards and survey responses. Secondary outcomes included measures of vaccine hesitancy, confidence, knowledge, and conspiracy beliefs. We tracked paradata to assess intervention engagement and were 100% accessible to our participants and partners.
Vaccine Interventions are Game-Changers
Preliminary observations suggest that TT-C holds significant promise. By using digital storytelling and incorporating valuable insights from young adults and expert advisor boards, TT-C resonated with Black young adults. The mobile app format ensured that participants could access information and support from anywhere using a youth-friendly modality, removing barriers like transportation and the need for clinic visits. The intervention’s culturally relevant content addressed concerns and misconceptions unique to the community’s lived experiences, fostering trust and confidence.
Vaccination saves lives; specifically, since the 1970s, vaccination has saved 154 million lives globally. If TT-C is indeed successful at reducing vaccine hesitancy and improving vaccine knowledge, there will be a strong case for adapting TT-C to promote other vaccines like influenza and HPV to avert preventable diseases, such as cervical cancer. By breaking down structural barriers and giving those we aim to support a true voice in the scientific process, we can foster trust, fight misinformation, and reduce vaccine hesitancy. Together, hand in hand, we can create a healthier future by improving rates of life-saving vaccinations.
Learn More
For more information on this project, visit our website and follow us on social media for updates on TT-C and our other health equity initiatives and success stories.
Lisa Hightow-Weidman, M.D., M.P.H., and Henna Budhwani, Ph.D., M.P.H., are co-principal investigators of the Tough Talks for COVID-19 study.
Dr. Hightow-Weidman is a Distinguished and Endowed McKenzie Professor at the Florida State University (FSU) College of Nursing. She is the founding director of the Institute on Digital Health and Innovation and the contact PI of the Adolescent Medicine Trials Network for HIV/AIDS Intervention (ATN) Scientific Leadership Center.
Dr. Budhwani is a professor at the FSU College of Nursing and leads the Institute on Digital Health and Innovation’s Intervention Research and Implementation Science Hub. A medical sociologist by training, Dr. Budhwani’s research focuses on addressing health inequities among adolescents and young adults via pragmatic clinical trials.
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Can Virtual Reality-Based Stress Reduction Interventions Be a Game Changer for Addressing Intersectional Stress Among Minoritized Women?
By Judite Blanc, Ph.D.
University of Miami Miller School of Medicine
Posted July 22, 2024My journey to the field of stress research and disaster mental health began during my postpartum as a first-time mother, after surviving the most devastating Haiti earthquake in 2010, which claimed over 200,000 lives. Worried about our safety and too scared to hide under my bed, halfway through my master’s degree in developmental psychology at the time, I grabbed my baby and hurried into a closet. As the place was shaking and my baby was screaming, I thought we were going to die alone. We were not injured, but with each aftershock, I was terrified that our house would collapse on us.
After the earthquake, similarly to thousands of displaced survivors, we left Haiti for a month or two and went to Florida for safety, but I knew my place was in Haiti. So, in March 2010, I returned and joined Haiti’s Psycho Trauma Center, which was set up to help heal survivors’ psychological wounds.
I enjoyed working with the displaced children. Nevertheless, I was also curious about the efficacy and cultural limitations of these Western-centered theoretical frameworks that inspired our interventions. I obtained a scholarship to complete my graduate studies in the field of psychopathology and health psychology in France, where I received extensive training in traumatic stress research. Findings from my dissertation project highlighted the urgent need for trauma-focused and holistic programs for perinatal women, mother-children dyads, and school-aged children who are survivors of traumatic events.
A few years after the disaster, I moved to the United States. I was confronted with another traumatic reality: Black women and their children, regardless of education levels, suffer significantly from health disparities. For instance, they are the most affected by the maternal mortality crisis in the U.S., which is comparable to that of lower-middle-income countries, making it a national public health emergency. This realization further fueled my passion for addressing these disparities.
Evaluating the Effect of a Virtual Reality Program on Maternal Stress Among Perinatal Women of Color
Perinatal mental health issues are the drivers of complications during pregnancy, childbirth, and maternal mortality. Studies indicate that 15% to 20% of pregnant and postpartum individuals in the U.S. suffer from mood or anxiety disorders. However, this mental health crisis does not affect all racial and ethnic groups equally. Women, particularly Black women from marginalized communities, are disproportionately impacted, underscoring the complex interplay of race, ethnicity, gender, and socioeconomic status.
In response to this crisis, in 2022, The Media and Innovation Lab and I implemented the ongoing Nurturing Moms study at the University of Miami Miller School of Medicine. Our study assesses Nurture VR™, a virtual reality (VR)-based, pregnancy-related education program integrating mindfulness techniques, relaxation exercises, and guided imagery for perinatal Black and Latina women. VR uses computer modeling and simulation to allow a person to interact with a simulated 3D visual or sensory environment.
In our recent qualitative phase of the study, we learned about specific challenges faced by our volunteers, such as time management difficulties, caregiver burden, financial strain, insufficient sleep, societal pressures, lack of social support, traumatic stress, and inadequate health care coverage.
While conducting the focus groups, I was struck by the contrasting perspectives among participants. Some Latina women emphasized the inherent resilience of motherhood, while Black participants expressed frustration with the societal expectation of the "strong Black woman" archetype.
"The idea that you just got to keep pushing forward even if the day is tough, like you have to. You’re a mom. You got to like suck it up and do dues because these kids need you, and then at the end of the day, when you want to unwind and go to bed, you end up scrolling through your phone because that’s your only me time."
– Expectant mother of one, Hispanic"Everywhere as a Black woman, you have to be strong, and I just can’t stand to hear that because it’s like, why are we the only race that have to be strong? Why everybody else gets to cry, get to show emotion, get to feel, but we always have to be strong."
– Expectant mother, Haitian-bornThe women’s responses highlight the nuanced experiences within different cultural contexts. Additionally, there were varied views on the new medicine for postpartum depression, zuranolone. Some participants said they favor complementary medicine, and others showed strong interest in it due to limited access to mental health professionals.
Many of our study participants provided positive feedback, emphasizing that the immersive quality of VR effectively engaged them and demonstrated its effectiveness in creating a unique experience through guided imagery and relaxation techniques. For example, while wearing the VR headset, pregnant or new moms can select educational modules or guided imagery that allow them to become entranced by the rhythmic waves of a beach or the tranquility of a green space. This experience can elevate their mood and help them focus, learn, and retain positive experiences.
A prominent theme that emerged was the participants’ sense of escapism. The portability and on-demand nature of VR-based interventions make them a valuable asset for low-income communities. In these communities, transportation challenges, cultural barriers, and the stigma surrounding mental health can significantly hinder access to quality mental health services among marginalized populations.
Culturally tailored and affordable VR-based interventions have the potential to mitigate these barriers, thereby contributing to the reduction of social determinants of health stressors among women and mothers of color.
Judite Blanc, Ph.D., is a 2023 NIMHD HDRI Scholar and a multilingual assistant professor of psychiatry and behavioral sciences at the University of Miami Miller School of Medicine. Dr. Blanc leverages innovative ethnographical and integrative medicine tools to investigate and confront cumulative intersectional stressors. Her work evaluates the stress responses among marginalized families, women, and children to provide solutions for transforming the lives of families, women, and children through science, education/training, community services, and advocacy in the United States and globally. She was recently awarded a K01 from NHLBI to evaluate a Virtual Reality Intervention for Stress, Resilience, and Blood Pressure Management in Black Women (1K01HL175286-01).
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Confronting the Legacy of Medical Misinformation - Let's Start With Race-Based Medicine
By Keisha Bentley-Edwards, Ph.D., Olanrewaju Adisa, Kennedy Ruff, and Catherine Kiplagat
Samuel DuBois Cook Center Health Equity Working Group
Posted May 30, 2024Throughout 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
Hypertension 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.
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Love, Health, and the Hood: Neighborhood Effects on Black Couples’ Functioning
By August "A.J." Jenkins, Ph.D.
University of Illinois at Urbana-Champaign
Posted Feb. 16, 2024When I think about the resources that may be important to Black Americans' psychological health and their intimate relationships, I often think about my grandparents' neighborhood on the westside of Detroit (my hometown). Growing up, my sister and I regularly went to their house. I was fascinated by their community—because it was exactly that: a community. All the neighbors knew each other's families, looked out for each other, shared resources, and had get-togethers and barbeques.
To me, my grandparents' community defied the things people typically associated with living in the city. Detroit neighborhoods are often thought of as dangerous and disadvantaged, but for me, our neighborhoods can also provide a sense of belonging, safety, and protection.
I understand that neighborhoods are not only a context for living but also a resource for flourishing, and this has shaped my perspective and how I approach work. I investigate how racism impacts Black Americans' mental health and intimate relationships, along with how they are connected over time. Experiences have taught me that resilience can always be found in adverse circumstances, so I also study how Black Americans leverage available sociocultural and ecological capital and coping resources to maintain and enhance their well-being.
Racism impacts multiple levels (e.g., interpersonal, cultural levels), with scholars noting the incredibly devastating consequences of structural racism for Black Americans' health and health inequities. For Black Americans, the residential context is one of the most striking examples of structural racism. There is a long history and enduring practice of segregation; no other racial group has experienced the same degree of residential segregation as Black Americans.
Consequently, Black Americans are also more likely to live in disadvantaged environments and be exposed to community stressors like poverty, crime, physical, and/or social disrepair that are associated with poorer mental-emotional health outcomes for Black Americans. Nonetheless, neighborhoods can also provide residents a sense of community, cohesion, and safety and offer resources that benefit mental health.
Notably, neighborhood environments not only affect individual functioning but also intimate relationships. Research shows the significance of the neighborhood context for Black romantic relationships, as disadvantaged areas can influence relationship behaviors and quality. Black adults living in urban neighborhoods have discussed how neighborhood violence and distress can contribute to their reluctance to be emotionally vulnerable/available with romantic partners and reinforce feelings of worry and anxiety.
Still, positive neighborhood characteristics can benefit romantic relationship quality, providing couples with healthy relationship role models and providing opportunities for support (e.g., childcare support from neighbors) and access to helpful resources (e.g., community centers, religious organizations).
In a study funded by my NIMHD F31 fellowship, my colleagues and I investigated the ways that neighborhood quality and romantic relationship functioning combine to impact Black Americans' mental health over time. Utilizing an intersectional frame, we also looked at how these variables were related to mental health in unique ways for Black men and women.
Research highlights that Black men can be particularly sensitive to neighborhood factors—possibly because they contend with societal pressure to appear fearless and tough and counter stereotypes around criminality even when exposed to gangs, negative police interactions/profiling, and other racialized community stressors. Black men's perceptions of community strife have also been linked to hostile behaviors within their marriage, which are connected to poorer mental health for both men and their partners/wives.
A key takeaway from my F31 fellowship is that better neighborhood quality is related to better mental health for both men and women. Study participants living in higher-quality neighborhoods showed lower levels of negative mood and higher levels of positive mood 10 years later, even after accounting for their initial levels of emotional functioning and socioeconomic status.
Additionally, neighborhood quality and relationship functioning combined to uniquely affect Black men's (but not women's) psychological health. Men who reported better relationship functioning, but poorer neighborhood quality showed more emotional distress ten years later. Perhaps Black men in positive relationships want to provide the best for their partners, but ambient neighborhood stress is detracting, signaling that they are not living up to their desires to provide for and protect their family or interfering with their attempts to do so, resulting in more distress. However, men in better-quality neighborhoods might not experience this level of external stress, allowing them to capitalize on the positive effects of both their romantic relationships and neighborhoods, showing less emotional distress over time.
Together, these results underscore the powerful, long-lasting psychological effects of people's ideas about the support (or stress) that is present in their communities. Further, the results highlight the specific ways neighborhood context and romantic relationship functioning intersect to impact psychological health, suggesting that interventions at the neighborhood level could have valuable mental health impacts for Black Americans and their ability to take advantage of the positive psychological consequences of relationship functioning.
Ultimately, in my work, I aim to illuminate complex issues related to health, relationships, and social inequity for Black Americans and uncover opportunities to redress disparities in these areas. I intend to continue interrogating the connections between community contexts and other manifestations of racism to Black mental health and relationships by unpacking these links at multiple intersections (e.g., gender, social class) and examining their contribution to long-term psychological and relational health outcomes. This work helps highlight points for change/intervention in policy, clinical, and community realms. Through this work, I hope that eventually, we all can experience a sense of community just like my grandparents in their neighborhood.
Citations
Bryant, C. M., & Wickrama, K. A. S. (2005). Marital relationships of African Americans: A contextual approach. In V. McLoyd, N. Hill, & K. A. Dodge (Eds.), African American family life: Ecological and cultural diversity (pp. 111–134). Guilford Press.August "A.J." Jenkins, Ph.D., is a 2023 - 2024 Vice Chancellor's Distinguished Postdoctoral Fellow and Visiting Scholar in the Department of Human Development and Family Studies at the University of Illinois at Urbana-Champaign. Dr. Jenkins investigates how racism impacts Black Americans' mental health and intimate relationships, along with how they are connected over time. She also studies how Black Americans leverage available sociocultural and ecological capital and coping resources to maintain and enhance their well-being.