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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, 2024

  Clockwise from top left: Drs. Lynette Hammond Gerido, Hamid Reza Kohan Ghadr, Preeti Pushpalata Zanwar, and Scott Emory Moore

  Addressing 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.

• Immigrant Health is Interpersonal

  

  By Amanda Venta, Ph.D.
  University of Houston
  Posted Sept. 9, 2024

  Waves 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.

  Dr. Venta and colleagues look out from the international bridge connecting McAllen, Texas and Reynosa, Mexico, where many migrants try to cross into the U.S., and many have lost their lives doing so. Credit: Mark Teiwes

  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

  Dr. Venta talks to a young girl at a migrant camp in Reynosa, Mexico. Credit: Mark Teiwes.

  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.

• 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, 2024

  The 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.

  A screenshot from the Tough Talks COVID-19 mobile application. Credit: Virtually Better, Inc

  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.

• African American Faith Communities: Foundations for Mental Wellness

  

  By Rebecca Selove, Ph.D., M.P.H.
  With contributors Rev. Neely Williams and Rev. Dr. Omaràn D. Lee
  Posted July 31, 2024

  Left to right, Dr. Rebecca Selove, Rev. Neely Williams, Rev. Dr. Omaràn D. Lee

  The role of the church in African Americans’ lives and communities is immense and multi-faceted. In his recent book, The Black Church, Henry Louis Gates wrote, “The Black Church was the cultural cauldron that Black people created to combat a system designed in every way to crush their spirit. Collectively and with enormous effort, they refused to allow that to happen.”

  A 2021 survey indicates that 47% of Black Americans attend church at least once a week, more than any other racial and ethnic group, and more than half of Black Americans who participate in church activities attend congregations that they identify as a Black church. These powerful and potent community centers’ historical and social roles align with NIMHD’s mission to improve minority health and reduce health disparities. They are addressing mental health needs as part of their dedication to supporting the health of their community’s soul. Researchers who focus on addressing African American health must engage leaders of these congregations as teachers and mentors for their research endeavors. These leaders already know much of what scientists want to understand.

  Sabbath services in Black churches are often joyful expressions of gratitude and support. Messages from the pulpit and choir that acknowledge challenges, such as physical suffering, financial stress, grief, and anxiety, are offered in the overarching context of appreciation for the support, power, and goodness of God.

  As someone of European Jewish ancestry, my education about Black churches began fairly recently. I am a member of the research team for the NIMHD’s Engaging Partners in Caring Communities (EPICC) project designed to build the capacity of congregations that serve African American communities to implement health promotion programs. I have enjoyed being welcomed into uplifting and inspiring Sunday morning services with our partners. “Good morning, Church” is a frequent greeting to all who are gathered in the sanctuary – everyone is included in the loving welcome.

  At the same time that I have been experiencing the joy and warmth of the African American faith community, my faith leader partners and teachers in the EPICC project have been sharing their concerns about mental health issues affecting many in the African American community. They tell me about being called to address high levels of suffering associated with bereavement, suicide, substance use disorders, anxiety, depression, and youth and family violence. Pastors feel responsible for addressing these concerns while being very aware that the larger community offers inadequate support and resources that are sensitive to the needs and culture of African Americans. They note disparities in mortality associated with COVID-19 in African American communities, anxiety about access to trustworthy healthcare, and isolation associated with virtual participation in church activities during the pandemic.

  The research literature reflects their leadership in health equity, social justice activism, and community-academic partnerships emerging to build on the long-standing strengths and mission of faith communities. Pastoral care and church-based programs to address depression and alcohol use disorders, and to reduce mental health stigma are examples.

  At a recent gathering of leaders from nine EPICC partner congregations, Ms. Gwen Hamer from the Tennessee Department of Health and Mr. Sheldon Walker of Davidson County Metro Health Department described the Suicide Prevention and the African American Faith Communities Coalition (SPAAFCC), which started in 2009. Gwen told us, “… leaders in the African American faith communities… are one of the first people to be contacted when one of their parishioners is contemplating suicide or if a family member or friend of someone who has died by suicide needs comfort and encouragement. We felt their input in developing strategies to raise suicide prevention awareness and to help save lives from suicide in their faith communities was absolutely vital.”

  SPAAFC provides monthly virtual meetings for members to support one another, as well as training in programs such as Question, Persuade, and Refer also known as the QPR Gatekeeper Training.

  Our EPICC project team benefits from the guidance of two leaders in the Nashville African American faith community. Rev. Neely Williams has a long history of community advocacy and collaboration with academic researchers. Rev. Williams counsels our EPICC research staff to listen for our faith community partners’ strengths and to acknowledge the insights and priorities of church leaders. Rev. Dr. Omaràn D. Lee, a pastor and mental health practitioner currently serving as regional director of the Tennessee Governor’s Faith-Based and Community Initiative, helped develop the EPICC proposal. He leads programs through the Reach One, Teach One Foundation and Centers for Well-Being to support pastors and faith leaders so they can better serve their congregations.

  Faith community leaders have been providing a foundation for mental wellness for centuries, building on the considerable strength and wisdom of their spiritual traditions, their response to being called to serve their congregations, and their deep compassion for fellow human beings. We are grateful to be invited to join them in this effort.

  Rebecca Selove, Ph.D., M.P.H., is director of the Center for Prevention Research at Tennessee State University. She has served as a clinical psychologist in a variety of community settings and is currently focusing on implementation science and community-engaged research to promote health equity.

  Rev. Neely Williams is a minister, a community advocate, and a community organizer who has actively participated in the work of the Patient-Centered Outcomes Research Institute (PCORI) since its inception over 10 years ago. She serves as a consultant to the EPICC project’s research and community partner staff, lifting and articulating the community perspective on health disparities and health equity.

  Rev. Dr. Omaràn Lee, formerly the director of the Congregational Health Network (CHN), helped develop the funding proposal for EPICC. He is a pastor, a pastoral counselor, and regional director of the Tennessee Governor’s Faith-Based and Community Initiative, where he oversees the collaboration and coordination of faith-based and community organizations to address social issues and improve the quality of life for Tennesseans.

• 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, 2024

  

  My 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.

  
  

  A mom uses the NurtureVR headset and controller in her hospital room to relax and learn.

  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-born

  The 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).

• 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, 2024

  

  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

  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.

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

  

  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:

  • NOT-MD-23-008: Notice of Special Interest: Research to Address Vaccine Uptake and Implementation Among Populations Experiencing Health Disparities
  • Approved Funding Concept: Multilevel Pathways and Interventions to Promote Vaccine Uptake Among Populations Experiencing Health Disparities

  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?

  • NIH Community Engagement Alliance (CEAL): CEAL Against COVID-19 Disparities works closely with the communities hit hardest by COVID-19.
  • RADx® Underserved Populations (RADx-UP) was created by NIH to ensure that all Americans have access to COVID-19 testing, with a focus on communities most affected by the pandemic.

  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

  

  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

  

  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.