Uterine fibroids (leiomyomas or myomas) are a major issue for individuals with a uterus as well as a disease with profound disparities for Black/African American (Black) individuals. These disparities have roots in early gynecologic practice where procedures such as forced sterilizations and hysterectomy without consent were common in some areas. The COllaboration for EQuity in Uterine Leiomyomas Specialized Center for Health Disparities and Uterine Fibroids is funded by the National Institutes of Health. Using the research framework of the National Institute on Minority Health and Health Disparities, informed by the historic legacy of gynecologic surgery, COllaboration for EQuity in Uterine Leiomyomas aims to provide values-congruent care to all individuals with the goal of improving outcomes for all and reduction or elimination of disparities for Black individuals with fibroids.
Background:Genetic testing is recommended for all children with global developmental delay or intellectual disability (GDD/ID) without a clearly-identifiable acquired etiology, as it leads to a rare disease diagnosis up to 40% of the time and has implications for medical management and family planning. However, families often experience years-long journeys from the time of initial presentation with developmental concerns to the time of genetic testing, if it is completed at all. An implementation science-based approach to understanding determinants of genetic testing for GDD/ID is ideal for identifying key targets for future strategies to improve uptake. Methods:The Health Equity Implementation Framework was used to adapt a semi-structured qualitative interview guide from a previous study. Interviews were conducted with 18 caregivers of children with GDD/ID who had been evaluated in pediatric neurology clinics at a single tertiary care institution. Over half of participants (55.6%) self-identified with at least one historically underrepresented demographic (33.3% Black/African American, 27.8% with high school or less education, 27.8% with high neighborhood-level area deprivation, 11.1% rural). Content analysis was performed using inductive and deductive coding. Content saturation was reached. Results:Six themes reflected multilevel factors influencing uptake of genetic testing: (1) caregiver search for answers, advocacy, and empowerment; (2) real-world healthcare accessibility; (3) financial strain and insurance coverage; (4) trust and communication with providers; (5) racial disparities and discrimination; and (6) social support and community networks. Most caregivers viewed genetic testing positively. Pathways to testing were often complex and uneven. Social determinants (insurance, employment flexibility, rurality, family structure, and racism) shaped families' ability to access timely testing and follow-up. System-level barriers such as uncoordinated referrals, inconsistent provider knowledge, and long wait times compounded these challenges. Together, these factors created unequal diagnostic journeys for families, even within the same health system. Conclusions:We identified caregiver-informed targets to improve the quality and equity of care for patients with GDD/ID including insurance coverage, diagnostic efficiency, resource availability and awareness, healthcare navigation, and cultural humility. These targets inform the development and adaptation of implementation strategies to improve uptake and reduce the protracted time of the diagnosis and genetic testing journey. Trial registration:Not applicable.
Objective: Evaluate quantitative and qualitative differences by sex and race/ethnic identities in curriculum vitae (CV) of faculty candidates for promotion. Methods: This was a retrospective, multisite, single-institution study of all candidates who applied to be considered for promotion to associate professor or professor from January 2015 to July 2019. Data on leadership positions, grants, and publications were abstracted from CV using a standardized procedure. Demographic data, including sex, race, and part-time status were obtained from the Human Resources database. Characteristics from CV were compared between groups using c2 or Fisher exact tests for categorical data, and Kruskal-Wallis tests for continuous data. Results: A total of 162 women and 300 men applied for associate professorship and 89 women and 231 men applied for professorship. There were 304 White, 112 Asian, and 43 underrepresented in medicine (URM) candidates for associate professorship and 228 White, 68 Asian, and 22 URM candidates for professorship. Women were more likely to work part-time than men (associate professor: 23.5% vs 3.3%, respectively, P<.001; professor: 24.7% vs 5.6%, respectively, P<.001) and had fewer papers published overall (associate professor: median 35 vs 40, respectively, P1/4.001; professor: median 66 vs 77, respectively, P1/4.012). White candidates were more likely to have held an elected office to society (13.5% vs 3.6% Asian vs 0% URM, P1/4.001). Asian candidates were less likely to be a chair/ co-chair compared with White individuals and other URMs (3.6% vs 10.9% vs 14.0%, respectively, P1/4.043). The ratios of candidates for professor-toeassociate professor for women and URM was 50% compared with 25% for White men, respectively. Conclusion: The participants' CV demonstrated notable differences associated with the candidate's race/ethnicity and sex. (c) 2025 Published by Elsevier Inc on behalf of Mayo Foundation for Medical Education and Research
BACKGROUND AND OBJECTIVES:Genetic testing is critical for optimal diagnosis and management of pediatric neurology patients, but access is challenging. We investigated whether social determinants of health (SDOH) were associated with genetic testing among pediatric neurology patients in a retrospective observational study. METHODS:Electronic health record data were extracted from pediatric outpatients (0-18 years) evaluated at a single tertiary care institution between July 2018 and January 2020. Genetic testing requests, insurance denials, and test completion rates were compared among non-Hispanic single-racial or multiracial Black (Black) vs non-Hispanic single-racial White (White) patients. SDOH and clinical variables including ethnoracial identity, insurance type, Area Deprivation Index, rural urban commuting area, sex, age, diagnoses, and number of neurology visits were evaluated to identify associations with chromosomal microarray (CMA), multigene panel (MGP), and exome/genome sequencing (ES/GS) test completion. RESULTS:Of 11,371 patients (mean age 9.25 years; 46.1% female), 554 (4.9%) completed ≥1 genetic test in the study interval, with White patients nearly twice as likely to have completed ≥1 genetic test compared with Black patients (aOR 1.88, 95% CI 1.41-2.51). Outpatient pediatric neurology was the most common specialty through which testing was completed. Neurology provider request rates for genetic testing did not differ by patient ethnoracial identity, but insurance denial rates after neurology request were lower for White vs Black patients (relative rate ratio [RR] 0.44, 95% CI 0.27-0.73), and those with public insurance were less likely to complete genetic testing after it was requested through neurology (aOR 0.59, 95% CI 0.35-0.97). However, when considering individual genetic test types completed through any specialty, insurance type was significantly associated only with MGP completion (public vs private OR 0.56, 95% CI 0.40-0.77), not CMA or ES/GS. DISCUSSION:Marked ethnoracial disparities in genetic testing completion were identified despite equivalent rates of genetic testing requests by neurologists. While Black patients had higher rates of insurance denials, insurance type itself accounted for the disparity in MGP but not CMA or ES/GS completion. Other unmeasured barriers stemming from systemic racism likely affected genetic testing among Black patients.
Objective:To investigate clinical, social, and systems-level determinants predictive of genetics clinic referral and completion of genetics clinic visits among child neurology patients. Methods:Electronic health record data were extracted from patients 0-18 years old who were evaluated in child neurology clinics at a single tertiary care institution between July 2018 to January 2020. Variables aligned with the Health Equity Implementation Framework. Referral and referral completion rates to genetics and cardiology clinics were compared among Black vs White patients using bivariate analysis. Demographic variables associated with genetics clinic referral and visit completion were identified using logistic regressions. Results:In a cohort of 11,371 child neurology patients, 304 genetics clinic referrals and 82 cardiology clinic referrals were placed. In multivariate analysis of patients with Black or White ethnoracial identity (n=10,601), genetics clinic referral rates did not differ by race, but were significantly associated with younger age, rural address, neurodevelopmental disorder diagnosis, number of neurology clinic visits, and provider type. The only predictors of genetics clinic visit completion number of neurology clinic visits and race/ethnicity, with White patients being twice as likely as Black patients to complete the visit. Cardiology clinic referrals and visit completion did not differ by race/ethnicity. Interpretation:Although race/ethnicity was not associated with differences in genetics clinic referral rates, White patients were twice as likely as Black patients to complete a genetics clinic visit after referral. Further work is needed to determine whether this is due to systemic/structural racism, differences in attitudes toward genetic testing, or other factors.
Objectives/Goals: Chronic stress may accelerate biological aging yet is often overlooked in clinical settings. Many tools to assess stress exist, but a comprehensive measure of cumulative stress across the lifespan is unavailable. This study validates a novel measure of lifetime stress for use as a screening tool in clinical practice. Methods/Study Population: Patients (n > 220) enrolled in brain health research registry at the Washington University St. Louis Knight Alzheimer Disease Research Center completed in-person surveys at baseline and after six months. Baseline measures included the everyday discrimination scale (EDS), total adverse experience (TAE), and demographics. Age and evaluating life course stress experience (ELSE) scores were measured six months later. Ongoing analysis includes age-adjusted correlations of ELSE scores with TAE and EDS scores. We will investigate the correlation with race and ethnicity and sex assigned at birth. We will explore the relationship between ELSE score and multidimensional intersectionality. Results/Anticipated Results: The sample was 87% Black or African American, 8% White, 4% Hispanic, 82% female, and 18% male, with a mean age of 66 ± 10 years. Age-adjusted relationships between patient characteristics and ELSE scores will be analyzed. Additionally, ELSE responses will be compared against age, EDS, and TAE measurements. Intersectionality between race-ethnicity, sex, and gender will be examined. We hypothesize ELSE scores will vary by demographic. Preliminary results indicate the ELSE scale correlates with established life stress measures, accounting for cumulative stress exposure across a lifespan independent of specific stressor topics. Discussion/Significance of Impact: The ELSE scale is a viable tool for clinical screening of chronic stress exposure over a lifespan. Its implementation will allow clinicians to identify patients at high risk for accelerated aging, facilitating targeted interventions and advancing equity in healthcare delivery.
Background:Black or African Americans (AA) with Parkinson's disease (PD) are underrepresented in both care and research and experience significant health disparities. The existing literature provides limited guidance on how to enhance the engagement of AA individuals in PD care and research, particularly from the perspectives of AA patients, care partners, and healthcare providers. This project aimed to (1) describe the use of Community Engagement (CE) Studios as a community-engaged research approach to inform culturally appropriate and inclusive research and (2) examine factors influencing AA engagement in PD-related activities. Methods:We conducted three CE Studios: one with AA with PD and care partners (N = 6), one with healthcare providers of AA with PD (N = 8), and one with AA with PD, care partners, and healthcare providers (N = 4). Results:The CE Studios informed the design (e.g., cultural appropriateness) and conduct (e.g., accessibility) of the planned PD project, as well as identifying stakeholders to engage with, improving alignment between research and the AA community. We highlighted the importance of multifaceted factors, including environmental (e.g., segregation), biological (e.g., symptoms), sociocultural (e.g., not being invited), and behavioral (e.g., empowerment) domains, which influence AA engagement. Conclusions:The CE Studios method is a feasible and useful approach for understanding the perspectives of AA in PD. It is possible to conduct an in-depth exploration of community perspectives by synthesizing comprehensive analyses and leveraging additional frameworks. These efforts include identifying barriers to engagement, recognizing locally relevant individuals, and refining PD-related care to enhance cultural appropriateness.
The Alzheimer's Disease Research Centers (ADRCs) consortium represents a critical locus of research on Alzheimer's disease and related disorders (ADRD) prevention, diagnosis, and intervention. Through the National Alzheimer's Coordinating Center's (NACC) standardized protocol, the Uniform Data Set (UDS), ADRCs have collected rich, harmonizable clinical and cognitive data. However, the collection of social data has been sparse and Center specific, constraining ADRD science that addresses research priorities on social determinants of health (SDOH) and health equity. Capitalizing on the transition to a revised UDS version 4, an interdisciplinary committee representing 10 ADRCs reviewed the literature and instrumentation, ultimately creating a brief module covering multiple domains and levels of exposure required for mechanistic studies of SDOH and brain health. This article offers rationale, empirical support, and guidance for using the selected constructs: transportation security, financial security, social connectedness, health care experiences, and discrimination, as well as recommendations for next steps that each ADRC can take to maximize local and field-level progress. HIGHLIGHTS: Social determinants of health (SDOH) play a role in Alzheimer's disease and related dementias (ADRD) risk, diagnosis, care, and research participation. A new module adds SDOH to a revised Uniform Data Set (UDS) for the Alzheimer's Disease Research Center (ADRC) consortium. UDS SDOH include transportation, socioeconomic status, social relationships, health care, and discrimination. We provide evidence for causal SDOH associations with ADRD and guidelines for use. We include recommendations for next steps and expanding the impact of the SDOH module.
This paper reports on a Conference organized by the Washington University School of Medicine's (WUSM) Knight Alzheimer Disease Research Center (Knight ADRC), entitled "Enhancing Participation by Minoritized Groups in Alzheimer Disease and Related Dementia (ADRD) Research." It builds on recommendations from a 2018 Workshop. Representatives from all 37 federally funded ADRCs described strategies to enhance the recruitment and engagement of participants from historically minoritized groups. St. Louis community members attended and provided input. The Conference was guided by the 2015 National Institute on Aging (NIA) Health Disparities Research Framework, which delineates that "fundamental life-course factors such as race, ethnicity, and socioeconomic status interact with behavioral and biological characteristics to determine health and disease." The multiple ways of engaging participants described at the Conference provide guidance and strategies that can be adapted and utilized across the ADRC network and other research programs nationally to enhance inclusion of minoritized groups in ADRD research. Highlights Increasing representation in Alzheimer disease and related dementias (ADRD) research is a national priority. The National Conference described strategies to diversify participation in AD research. All Alzheimer's Disease Research Centers (ADRCs) were represented. Local community members attended and participated in breakout sessions. Many community-engaged strategies are being used to enhance recruitment and retention. Approaches can be adapted for local needs and utilized by ADRCs.
OBJECTIVE:To investigate whether the process of conferring academic rank or components of the promotion packet contribute to the lack of parity in academic advancement for women and individuals underrepresented in medicine (URMs). PATIENTS AND METHODS:We retrospectively reviewed prospective promotion applications to the position of associate professor or professor at Mayo Clinic from January 2, 2015, through July 1, 2019. Individuals with doctorate degrees who applied for either rank were included in the study. Data collected included demographic characteristics, curriculum vitae at time of application, committee score sheets, and deferral and approval decisions. Deferral rates for women compared with men and for URMs compared with non-URMs was the primary outcome. RESULTS:Of 462 people who applied for associate professor, 10% (n=46) were deferred. Those promoted had worked longer at Mayo Clinic (median, 6 years vs 2 years; P=.01), had more mentees (median, 6 vs 4; P=.02), authored more publications (median [interquartile range (IQR)], 39 [32-52] vs 30 [24-35]; P<.001), and were more likely to be on a National Institutes of Health or institutional grant (P<.05). Of the 320 people who applied for professor, 8.8% (n=28) were deferred. Those promoted had authored more publications (median [IQR], 77 [60-99] vs 56 [44-66]; P<.001) and were less likely to hold an elected office to a professional society (22.6% vs 39.3%; P=.05). There was no significant association between deferral status and sex (P>.4) or race/ethnicity (P>.9) for either rank. CONCLUSION:The process for academic advancement for professorships does not contribute to the gap in promotion rates for women and URMs.
Hidden curriculum, which consists of the implicit norms and values embedded within institutions, impacts how students navigate their experiences in higher education. While the formal curriculum provides structured learning objectives and content, the hidden curriculum shapes students' socialization, sense of belonging, and access to opportunities within academic settings. For diverse students, hidden curriculum often reinforces existing power dynamics and inequities, creating additional barriers to their success. In many cases, the norms and expectations embedded within the hidden curriculum reflect dominant cultural norms, leaving students from marginalized backgrounds feeling alienated or intentionally excluded. Mentors and academic institutions play crucial roles in helping diverse students navigate the hidden curriculum of educational institutions by providing mentorship and resources to address the challenges of hidden curricula. In this paper, we introduce the importance of "NOW": 1) Nomenclature - What is Hidden Curriculum, 2) Opportunity - Opportunities to Address Hidden Curriculum in Higher Education, and 3) Willingness - Fostering an action plan for success in higher education. This paper will introduce a socioecological model for mentoring to address hidden curriculum at the individual, interpersonal, and institutional levels. At the individual and interpersonal level, we will discuss actions students and their mentors can take to develop their mentoring relationships. At the institutional level, we will identify opportunities to support diverse students and their mentors.
Medical researchers are increasingly prioritizing the inclusion of underserved communities in clinical studies. However, mere inclusion is not enough. People from underserved communities frequently experience chronic stress that may lead to accelerated biological aging and early morbidity and mortality. It is our hope and intent that the medical community come together to engineer improved health outcomes for vulnerable populations. Here, we introduce Health Equity Engineering (HEE), a comprehensive scientific framework to guide research on the development of tools to identify individuals at risk of poor health outcomes due to chronic stress, the integration of these tools within existing healthcare system infrastructures, and a robust assessment of their effectiveness and sustainability. HEE is anchored in the premise that strategic intervention at the individual level, tailored to the needs of the most at-risk people, can pave the way for achieving equitable health standards at a broader population level. HEE provides a scientific framework guiding health equity research to equip the medical community with a robust set of tools to enhance health equity for current and future generations.
BackgroundUterine fibroids are non-cancerous neoplasms that arise from the uterus affecting over 75% of women. However, there is a disparity with Black women having an increased prevalence of nearly 80%. Black women also experience increased symptom burden, including younger age at the time of diagnosis and increased number and volume of fibroids. Less is known about other ethnoracially diverse women such as Latinas and the potential cultural impacts on fibroid burden and treatment.MethodsCommunity engagement studios were conducted to facilitate discussions with stakeholders on their uterine fibroid and menstruation experience. We recruited Black women (n = 6) diagnosed with uterine fibroids and Latinas (n = 7) without uterine fibroids. We held two virtual community engagement studios split by uterine fibroid diagnosis. The studios were not audio recorded and notes were taken by four notetakers. The notes were thematically analyzed in Atlas.ti using content analysis.ResultsParticipants felt there was a lack of discussion around menstruation overall, whether in the home or school settings. This lack of menstruation education was pronounced when participants had their first menstruation experience, with many unaware of what to expect. This silence around menstruation led to a normalization of painful menstruation symptoms. When it came to different treatment options for uterine fibroids, some women wanted to explore alternative treatments but were dismissed by their healthcare providers. Many participants advocated for having discussions with their healthcare provider about life goals to discuss different treatment options for their uterine fibroids.ConclusionDespite uterine fibroid diagnosis, there is silence around menstruation. Menstruation is a normal biological occurrence and needs to be discussed to help prevent delayed diagnosis of uterine fibroids and possibly other gynecological disorders. Along with increased discussions around menstruation, further discussion is needed between healthcare providers and uterine fibroid patients to explore appropriate treatment options.
Abstract Background: Patients who have a potentially hereditary cancer (e.g., breast, ovarian, prostate) and self-identify as Black or African American (AA) are less likely to receive cancer genetic services than their White peers. Prior research indicates that the lack of consistent identification and referral of test-eligible patients and their family members is a significant barrier to receiving this care. Additionally, AA patients who do reach these services are much more likely than White patients to receive genetic test results that contain a variant of unknown significance (VUS). This disparity is largely attributable to the lower proportion of non-White patients included in cancer genetic research and clinically derived datasets. Developing culturally appropriate, community-informed, and community-based approaches to improve access to cancer genetic research and clinical care is critical to reducing these disparities. Methods: We used a community and patient engaged research (CPER) framework to develop and implement a series of community cafés. The foundation of the community café model is bi-directional engagement that emphasizes the critical roles of cultural awareness, empathy, and trust in healthcare and research improvement. Accordingly, we developed two brief educational modules that oriented café participants to the topics of 1) genetics and diversity in cancer research and 2) the role of family history in cancer risk assessment. Each ∼10 minute module was followed by a 30-40 minute facilitated listening session, enabling café participants to provide substantial feedback on both topics. Sessions were structured to generate input on the development of training and practice support materials for community health workers (CHWs) in the next phase of this research project. Note takers summarized the discussion at the end of each session, providing café participants an opportunity to revise or elaborate upon the written notes. Café sessions were also audio recorded for future transcription. Results: Eight community cafes were held from January-May 2024. Six cafes consisted of 121 AA community members (75.8% female; mean age = 53.4 years), most of whom had either been diagnosed with cancer (29.8%) or had a first-degree relative with cancer (31.4%). Two cafes enrolled a total of 21 CHWs (90.5% female; mean age = 45.4 years). Several actionable themes emerged during the listening sessions, including: clear explanations regarding why AA patients are being recruited into cancer genetic research studies, acknowledging harms of past race-based research; increased awareness of CHWs and how they can help build trust and bridge gaps between community members and academic medical centers. Café participants strongly endorsed increased presence of clinicians and researchers in community settings and increased representation of Black or African Americans on clinical and research teams. Impact: The community café approach was well received by community members, generating important input into the development of a community-based, equity-focused intervention. Citation Format: Erin Linnenbringer, Briana Wilson, Kayla Wallace, Anjali Kunavarapu, Charles Cogshell, Bailey Martin-Giacalone, Meera Muthukrishnan, Brett Maricque, Jessica Mozersky, Bettina Drake, Joyce Balls-Berry. Engaging Black and African American community members to develop culturally appropriate methods for cancer genetics education, risk assessment, and referral to research studies and clinical services: A community café approach [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B055.
Hidden curriculum, which consists of the implicit norms and values embedded within institutions, impacts how students navigate their experiences in higher education. While the formal curriculum provides structured learning objectives and content, the hidden curriculum shapes students' socialization, sense of belonging, and access to opportunities within academic settings. For diverse students, a hidden curriculum often reinforces existing power dynamics and inequities, creating additional barriers to their success. In many cases, the norms and expectations embedded within the hidden curriculum reflect dominant cultural norms, leaving students from marginalized backgrounds feeling alienated or intentionally excluded. Mentors and academic institutions play crucial roles in helping diverse students navigate the hidden curriculum of educational institutions by providing mentorship and resources to address the challenges of hidden curricula. In this paper, we introduce the importance of "NOW": 1) Nomenclature - What is Hidden Curriculum, 2) Opportunity - Opportunities to Address Hidden Curriculum in Higher Education, and 3) Willingness - Fostering an action plan for success in higher education. This paper will introduce a socioecological model for mentoring to address hidden curriculum at the individual, interpersonal, and institutional levels. At the individual and interpersonal level, we will discuss actions students and their mentors can take to develop their mentoring relationships. At the institutional level, we will identify opportunities to support diverse students and their mentors.
OBJECTIVES/GOALS: Uterine fibroids (UF) are a significant public health concern with a lifetime prevalence of over 70% in all women, however Black/African American women (BW) are disproportionately affected by UF, and Hispanic/Latinas (HL) mostly understudied. Our goal is to investigate sociocultural influences on menstrual and UF experiences of BW and HL with UF. METHODS/STUDY POPULATION: We have taken a community engaged research approach and partnered with the Fibroid Foundation, a patient UF advocacy group. Following IRB approval, the study was advertised on the Fibroid Foundation’s various social media platforms, such as Instagram. Screening began on October 25, 2022, the screening survey included participants’ contact information, preferred time of contact, time zone, and confirming identifying as a BW and/or HL diagnosed with UF. Ensuring eligibility, we plan to conduct semi-structured interviews for participants. The interviews will be conducted via phone or video call based on participant preference. The interviews will be sent for transcription to an external HIPAA compliant vendor then analyze the interviews for a priori and new themes using traditional content analysis. RESULTS/ANTICIPATED RESULTS: As of November 13, 2022, over 200 participants have completed the screening survey with a total of 133 (66.5%) being eligible to participate. The demographics are the following: 109 (82%) Black women, 14 (10.5%) Latinas, 4 (3%) Afro-Latinas, and 6 (4.5%) did not disclose ethnoracial identity. The participants were sent a consent form and will be interviewed. We anticipate achieving our goal of interviewing a minimum of 60 women for this study. Based on our previous research, we expect to find sociocultural influences leading to negative experiences of menstruation that affect access to care for UF. We also expect women will lack sufficient and accurate information regarding menstrual symptoms and UF. We additionally anticipate seeing delays in UF diagnosis. DISCUSSION/SIGNIFICANCE: There is a need to discuss sociocultural influences around menstruation as negative perceptions lead to delayed diagnosis of UF and can be translated to other gynecological diseases, such as endometriosis and endometrial and ovarian cancer. This suite of female-specific conditions all share increased disparity in historically minoritized women.