Equity Research Research Articles

Improving health equity through health care systems research.

To describe health equity research priorities for health care delivery systems and delineate a research and action agenda that generates evidence-based solutions to persistent racial and ethnic inequities in health outcomes. This project was conducted as a component of the Agency for Healthcare Research and Quality's (AHRQ) stakeholder engaged process to develop an Equity Agenda and Action Plan to guide priority setting to advance health equity. Recommendations were developed and refined based on expert input, evidence review, and stakeholder engagement. Participating stakeholders included experts from academia, health care organizations, industry, and government. Expert group consensus, informed by stakeholder engagement and targeted evidence review. Priority themes were derived iteratively through (1) brainstorming and idea reduction, (2) targeted evidence review of candidate themes, (3) determination of preliminary themes; (4) input on preliminary themes from stakeholders attending AHRQ's 2022 Health Equity Summit; and (5) and refinement of themes based on that input. The final set of research and action recommendations was determined by authors' consensus. Health care delivery systems have contributed to racial and ethnic disparities in health care. High quality research is needed to inform health care delivery systems approaches to undo systemic barriers and inequities. We identified six priority themes for research; (1) institutional leadership, culture, and workforce; (2) data-driven, culturally tailored care; (3) health equity targeted performance incentives; (4) health equity-informed approaches to health system consolidation and access; (5) whole person care; (6) and whole community investment. We also suggest cross-cutting themes regarding research workforce and research timelines. As the nation's primary health services research agency, AHRQ can advance equitable delivery of health care by funding research and disseminating evidence to help transform the organization and delivery of health care.

Co-producing research in the context of Covid-19: Global South and North collaborations

A central objective of this research paper is to consider how research methodologies are critical to the process of decolonising research. To ensure research is designed and executed not to be exploitative, special consideration is required for proposed research (er) collaborations between the Global South and North, particularly in research which focuses on gender, violence, and justice. Understanding the positionality of all groups involved allowed for research of mutual benefit. It provided a ‘checks and balances’ process to decolonise research processes and account for historical legacies of research being ‘done to’ communities in lower and middle-income countries and settings. This paper reflects on how Covid-19 impacted the collaborative partnerships for two projects conducted between the United Kingdom and Kenya. The projects addressed two separate, but connected issues: gender-based violence and sex workers' experiences of lockdown restrictions in Kenya. Both projects adopted peer methodologies which had to be adapted due to the pandemic. During Covid-19, travel restrictions were introduced globally, directly impacting the ability to conduct field research and carry out intended joint work in the field. The British and Kenyan governments introduced domestic measures to control the pandemic, including restrictions on movement and curfews; the closure of schools and public services such as courts; reduction in public transport and service closure. Overall, there was an increased reliance on technology for communication, which enabled project outcomes in challenging and unexpected circumstances. Both projects at the heart of this reflective article were forced to switch to (and exploit) internet-based methodologies and technological innovations to ensure project delivery whilst still located thousands of miles apart.To reflect and make sense of this adaptation process, qualitative semi-structured group interviews were conducted sometime after the projects had ended between December 2021–April 2022 with researchers from Kenya and the UK. The transcripts and interview notes were analysed for common themes. Funds were secured to bring a principal researcher from Kenya to the UK to conduct a thematic analysis.The findings identified three broad themes: first, the importance of co-creation and collaboration and the need to avoid hierarchical arrangements in research collaborations. Shared learning became an important value while undertaking such research, and mutual respect and support built lasting working ties among researchers as important elements of good collaboration. Secondly, we highlight key practical issues in conducting research and the ability to adapt and innovate to the changing nature of qualitative research while focusing on the well-being of researchers and research participants; and lastly, ensuring continuity and sustainability of interventions while acquiring further funding to enhance closer collaborations. We underscore the implications of Covid-19 and the need to demand proactive consideration in such research projects to ensure equity and ethical research partnerships that foster co-learning and mentorship. This includes taking proactive steps and setting up formal and informal well-being systems. Flexible funding is also required to nurture equal opportunities for collaborative and creative research and ensure long-term partnership sustainability. This supports the cultivation of a culture of co-creation and honouring knowledge sets in collaborative research.

A roadmap for social determinants of health and biological nursing research in the National Institute of Nursing Research 2022–2026 Strategic Plan: Optimizing health and advancing health equity using antiracist framing

BackgroundHealth equity is essential for improving the well-being of all individuals and groups, and research remains a critical element for understanding barriers to health equity. While considering how to best support research that acknowledges current health challenges, it is crucial to understand the role of social justice frameworks within health equity research and the contributions of minoritized researchers. Additionally, there should be an increased understanding of the influence of social determinants of health on biological mechanisms. PurposeBiological health equity research seeks to understand and address health disparities among historically excluded populations. DiscussionWhile there are examples of studies in this area led by minoritized researchers, some individuals and groups remain understudied due to underfunding. Research within minoritized populations must be prioritized to authentically achieve health equity. Furthermore, there should be increased funding from National Institutes of Health to support minoritized researchers working in this area.

Analysis of social determinants of health and individual factors found in health equity frameworks: Applications to injury research

Introduction: This research evaluated existing health equity frameworks as they relate to social determinants of health (SDOHs) and individual factors that may impact injury outcomes and identify gaps in coverage using the Healthy People (HP) 2030 key domains. Methods: The study used a list of health equity frameworks sourced from previous literature. SDOHs and individual factors from each framework were identified and categorized into the Healthy People 2030 domains. Five injury topic areas were used as examples for how SDOHs and individual factors can be compared to injury topic-specific health disparities to identify health equity frameworks to apply to injury research. Results: The study identified 59 SDOHs and individual factors from the list of 33 health equity frameworks. The number of SDOHs and individual factors identified varied by Healthy People 2030 domain: Neighborhood and Built Environment contained 16 (27.1%) SDOHs and individual actors, Social and Community Context contained 22 (37.3%), Economic Stability contained 10 (16.9%), Healthcare Access and Quality contained 10 (16.9%), and Education Access and Quality contained one (1.7%). Twenty-three (39.0%) SDOHs/individual factors related to traumatic brain injury, thirteen (22.0%) related to motor vehicle crashes and suicide, 11 (18.6%) related to drowning and older adult falls. Eight frameworks (24.2%) covered all HP 2030 key domains and may be applicable to injury topics. Conclusions: Incorporating health equity into research is critical. Health equity frameworks can provide a way to systematically incorporate health equity into research. The findings from this study may be useful to health equity research by providing a resource to injury and other public health fields. Practical Applications: Health equity frameworks are a practical tool to guide injury research, translation, evaluation, and program implementation. The findings from this study can be used to guide the application of health equity frameworks in injury research for specific topic areas.

From study plans to capacity building: a journey towards health equity in cancer survivorship

This article highlights the importance of pausing and reflecting on one's motivation, capacity, and positionality when engaging in health equity research and encourages researchers to engage in critical self-reflection and contribute to the ongoing dialogue on the ethical conduct of health equity-focused cancer research. In response to the urgent need to address health disparities and improve health equity in cancer survivorship care, the Cancer Prevention and Control Research Network (CPCRN) Survivorship workgroup discussed developing a study focused on understanding how racism impacts patient engagement in cancer survivorship care. However, during the study's development, the workgroup recognized limitations in research team composition and infrastructure. The workgroup engaged in critical self-reflections, individually and collectively, leading to the halting of the research study. Consequently, they redirected their efforts towards strengthening the necessary infrastructure for conducting such research, including diverse investigator representation and equitable partnerships with cancer survivors. The description of this process, along with suggestions for reflection, may be helpful and informative to other researchers and research networks seeking to center marginalized voices and work in partnership to address healthcare and health equity.

Brands in the Labor Market: How Vertical and Horizontal Brand Differentiation Impact Pay and Profits Through Employee–Brand Matching

The primary focus of brand equity research has been on how brand knowledge creates value for firms through customer behavior in product markets. Using archival data and five experiments, this article tests a framework that outlines the unique role brands play in the labor market. The framework distinguishes between vertical and horizontal differentiation and shows that vertical brand differentiation is associated with lower pay, whereas horizontal brand differentiation is associated with higher pay. Employees are also vertically and horizontally differentiated, and firms high in horizontal brand differentiation pay more for employees who match their brands’ differentiating characteristics (i.e., brand-relevant complementarities). Results show that these brand–pay relationships have important downstream effects on employee behavior and, consequently, on firm profits. Specifically, leveraging vertical brand differentiation to lower pay represents a false economy because profits are attenuated by negative effects on employee productivity and retention. In contrast, when managers at firms high on horizontal brand differentiation pay more, profits increase via the same mediating employee behaviors. Six firm strategies and investments that influence firm bargaining power in the employee–brand matching process are found to moderate the brand–pay relationship and downstream effects on profits.

Common measures of green and blue space for built environment, health equity and intervention research: a scoping review

ABSTRACT The purpose of this study was to describe self-report and audit-based measurement tools of green and blue space used for health equity and intervention research. This scoping review was conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR). In March 2022, we performed a literature search of MEDLINE, Embase, Web of Science, and SPORTDiscus. We found 22 papers, six of which used self-report tools and 16 of which relied on audit-based measures to assess green or blue space. These tools measure aspects of blue and green space including accessibility, equipment, and use. The System for Observing Parks and Recreation in Communities (SOPARC) was most used followed by the Public Open Space Audit Tool (POST) and the Community Park Audit Tool (CPAT). The priority populations most often studied were residents of low socio-economic status/high disadvantage neighbourhoods, followed by racialized groups and women. This scoping review provides guidance on common measurement tools that can be used by researchers working on green/blue space for health equity and intervention research. No reliable and valid self-report measure was used or available in the literature to examine equity in green/blue space.

Measuring walkability and bikeability for health equity and intervention research: a scoping review

ABSTRACT The purpose of this study was to describe self-report and audit-based measurement tools of neighbourhood walkability and bikeability for health equity and intervention research. We conducted a scoping review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines. We searched MEDLINE via PubMed, Embase, Web of Science, and SPORTDiscus with full text via EBSCO in March 2022. We extracted data from a total of 35 papers which reported on 23 self-report and 15 audit-based measures assessing walkability and bikeability. Studies spanned multiple regions including Africa, America, Australia, and Europe, but most were conducted in the United States (n = 15), followed by Australia (n = 6). The most used self-report measure was the Neighbourhood Environment Walkability Scale (NEWS), while the audit tools Pedestrian Environment Data Scan and Bridge the Gap Street Segment Tool were each used in two studies. The priority populations most often studied were residents of low socio-economic status/high disadvantage neighbourhoods, racialized groups, women, youth, older adults, and rural populations. Ultimately, there is no one tool that can be recommended for use in all contexts and with all priority populations; rather, tools may require adaptations to specific contexts and populations of interest.

A 25-Year Analysis of Diversity, Equity, and Inclusion Research in Orthopaedics Shows Majority Female Authorship and Increasing Gender Parity Research.

Orthopaedic surgery is one of the least diverse fields in medicine. In recent decades, there has been a concerted effort to increase diversity, equity, and inclusion (DEI) in the specialty, in addition to the institution of several organizations to establish the pipeline and facilitate underrepresented minority students into orthopaedic surgery. The aim of this study was to examine trends in orthopaedic surgery DEI research. A search of DEI articles was conducted in orthopaedic surgery using PubMed, MEDLINE, EMBASE, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Education Resources Information Center. The year of publication, article topic of focus, sex of the primary author, publishing journal, citation index, and primary contributing institution were recorded for each article. Sex of the primary author was predicted by the authors using an online image search of the author and institution. Articles were excluded if the research was conducted outside of the United States or if they were not specific to orthopaedic surgery. A total of 143 articles met the inclusion criteria. A total of 52.4% of authors (n = 75) were women and 44.1% (n = 63) were men. A total of 42.7% of the articles were written about sex (n = 61), 39.9% about race/ethnicity and sex (n = 57), and 11.9% about race/ethnicity (n = 17). A total of 10 articles were affiliated with Washington University in St. Louis while 51 other institutions wrote the remaining articles, with none having more than 4. Information could not be confirmed for 5 articles. In 2018, 5 articles were published, followed by 17 in 2019, 25 in 2020, 34 in 2021, and 30 in 2022. DEI research in orthopaedic surgery is a relatively new venture within the specialty and has room to grow, specifically in the examination of race/ethnicity and inclusion strategies. Leading journals and academic institutions in orthopaedic surgery should incentivize productivity and authorship in DEI research. III.

Definitions, terminology, and related concepts of “racial health equity”: a scoping review protocol

BackgroundIn the USA, access to quality healthcare varies greatly across racial and ethnic groups, resulting in significant health disparities. A new term, “racial health equity” (RHE), is increasingly reported in the medical literature, but there is currently no consensus definition of the term. Additionally, related terms such as “health disparities,” “health inequities,” and “equality” have been inconsistently used when defining RHE.MethodsThe primary purpose of this scoping review is to investigate the current use and underlying concepts used to define racial health equity. The study will address two key questions: (1) “What terminology and definitions have been used to characterize RHE?” and (2) “What knowledge gaps and challenges are present in the current state of RHE research and theory?” The review will collect and analyze data from three sources: (1) websites from key national and international health organizations, (2) theoretical and narrative published articles, and (3) evidence synthesis studies addressing interventions targeting racial health equity and minority stakeholder engagement.DiscussionDefining “racial health equity” and related terminology is the first step to advancing racial health equity within the USA. This review aims to offer an improved understanding of RHE constructs and definitions, bringing greater unity to national racial health equity research efforts across disciplines.Systematic review registrationThis protocol is registered with the Open Science Framework at https://osf.io/7pvzq.

First They Came for Us All: Responding to Anti-Transgender Structural Violence With Collective, Community-Engaged, and Intersectional Health Equity Research and Advocacy.

This article is a call for collective action across health equity researchers and advocates to build a more just world. We attempt to make sense of senseless structural and interpersonal brutality in the context of the current political climate across the United States, whereby the spectrum of gender nonconformity has been and continues to be stigmatized. From drag performance to transgender identities to gender-affirming health care, extremists have instrumentalized primary levers of democracy-the courts, legislatures, and social media-to attempt to outlaw and eradicate gender expansiveness and those who provide forms of support and care, including gender-affirming medical care, to transgender, nonbinary, and gender-expansive (TNBGE) individuals.

The Commercial Determinants of Health and Evidence Synthesis (CODES): methodological guidance for systematic reviews and other evidence syntheses

BackgroundThe field of the commercial determinants of health (CDOH) refers to the commercial products, pathways and practices that may affect health. The field is growing rapidly, as evidenced by the WHO programme on the economic and commercial determinants of health and a rise in researcher and funder interest. Systematic reviews (SRs) and evidence synthesis more generally will be crucial tools in the evolution of CDOH as a field. Such reviews can draw on existing methodological guidance, though there are areas where existing methods are likely to differ, and there is no overarching guidance on the conduct of CDOH-focussed systematic reviews, or guidance on the specific methodological and conceptual challenges.Methods/resultsCODES provides guidance on the conduct of systematic reviews focussed on CDOH, from shaping the review question with input from stakeholders, to disseminating the review. Existing guidance was used to identify key stages and to provide a structure for the guidance. The writing group included experience in systematic reviews and other forms of evidence synthesis, and in equity and CDOH research (both primary research and systematic reviews).ConclusionsThis guidance highlights the special methodological and other considerations for CDOH reviews, including equity considerations, and pointers to areas for future methodological and guideline development. It should contribute to the reliability and utility of CDOH reviews and help stimulate the production of reviews in this growing field.

Health equity in pediatrics: Current concepts for the care of children in the 21st century (Dis Mon)

This is an analysis of important aspects of health equity in caring for children and adolescents written by a multidisciplinary team from different medical centers. In this discussion for clinicians, we look at definitions of pediatric health equity and the enormous impact of social determinants of health in this area. Factors involved with pediatric healthcare disparities that are considered include race, ethnicity, gender, age, poverty, socioeconomic status, LGBT status, living in rural communities, housing instability, food insecurity, access to transportation, availability of healthcare professionals, the status of education, and employment as well as immigration. Additional issues involved with health equity in pediatrics that are reviewed will include the impact of the COVID-19 pandemic, behavioral health concepts, and the negative health effects of climate change. Recommendations that are presented include reflection of one's own attitudes on as well as an understanding of these topics, consideration of the role of various healthcare providers (i.e., community health workers, peer health navigators, others), the impact of behavioral health integration, and the need for well-conceived curricula as well as multi-faceted training programs in pediatric health equity at the undergraduate and postgraduate medical education levels. Furthermore, ongoing research in pediatric health equity is needed to scrutinize current concepts and stimulate the development of ideas with an ever-greater positive influence on the health of our beloved children. Clinicians caring for children can serve as champions for the optimal health of children and their families; in addition, these healthcare professionals are uniquely positioned in their daily work to understand the drivers of health inequities and to be advocates for optimal health equity in the 21st century for all children and adolescents.

Preparing for pragmatic trials in dementia care: Health equity considerations for nonpharmacological interventions.

Inequities with regard to brain health, economic costs, and the evidence base for dementia care continue. Achieving health equity in dementia care requires rigorous efforts that ensure disproportionately affected populations participate fully in-and benefit from-clinical research. Embedding-proven interventions under real-world conditions and within existing healthcare systems have the potential to examine the effectiveness of an intervention, improve dementia care, and leverage the use of existing resources. Developing embedded pragmatic controlled trials (ePCT) research designs for nonpharmacological dementia care interventions involves a plethora of a priori assumptions and decisions. Although frameworks exist to determine whether interventions are "ready" for ePCT, there is no heuristic to assess health equity-readiness. We discuss health equity considerations, case examples, and research strategies across ePCT study domains of evidence, risk, and alignment. Future discussions regarding health equity considerations across other domains are needed.

The Saga of Brand Equity: A Comprehensive Bibliometric Analysis

Purpose: The purpose of this research is to undertake a rigorous bibliometric analysis of the trends and patterns in brand equity research; to map the intellectual and social structure of brand equity; and to propose a transition plan for future work in this discipline. Methodology: This study has adopted (SPAR-4) systematic performance analysis and review technique. Following a specified search string, 1,842 journal articles from the previous 31 years (1992–2022) were pulled from the Scopus database. In order to comprehend the field’s knowledge base, various techniques of performance analysis and science mapping were employed using RStudio and VOSviewer. Findings: The results suggest that over the past three decades, both the volume and influence of brand equity studies have surged. Using co-citation analysis, we discovered four distinct subfields within the brand equity literature. Furthermore, the co-authorship network revealed that nations with little geographical, historical, and cultural proximity, such as the United States and South Korea exhibited the most active cross-country brand equity collaborations. Originality/Value: Despite the increasing amount of research being done on brand equity, the current look back is not adequate. This research is the first of its kind to provide practitioners, academics, and future scholars with valuable information about the intellectual and social structure of brand equity.

Bayesian estimation methods for survey data with potential applications to health disparities research.

Understanding how and why certain communities bear a disproportionate burden of disease is challenging due to the scarcity of data on these communities. Surveys provide a useful avenue for accessing hard-to-reach populations, as many surveys specifically oversample understudied and vulnerable populations. When survey data is used for analysis, it is important to account for the complex survey design that gave rise to the data, in order to avoid biased conclusions. The field of Bayesian survey statistics aims to account for such survey design while leveraging the advantages of Bayesian models, which can flexibly handle sparsity through borrowing of information and provide a coherent inferential framework to easily obtain variances for complex models and data types. For these reasons, Bayesian survey methods seem uniquely well-poised for health disparities research, where heterogeneity and sparsity are frequent considerations. This review discusses three main approaches found in the Bayesian survey methodology literature: 1) multilevel regression and post-stratification, 2) weighted pseudolikelihood-based methods, and 3) synthetic population generation. We discuss advantages and disadvantages of each approach, examine recent applications and extensions, and consider how these approaches may be leveraged to improve research in population health equity.

Exhausting work-life challenges through boundary management: an investigation of work-life boundary management among college students during remote work and COVID-19

ABSTRACT The abrupt transition to remote learning during the first year of the COVID-19 pandemic created considerable work-life boundary challenges for college students. Grounded in boundary management theory, this study utilizes an explanatory sequential mixed-methods approach, incorporating both a survey and subsequent focus groups, to explore the dynamics of boundary permeability, communication, work-life conflict, and exhaustion. Both traditional and underrepresented students were included, highlighting the experiences of these distinct populations. Our findings underscore that underrepresented students are particularly susceptible to work-life conflicts and exhaustion, a realization that points towards the critical need for supportive interventions tailored to their specific needs. Furthermore, this research addresses the paucity of studies focusing on students in the boundary management literature and offers valuable insights into diversity, equity, inclusion, and justice (DEIJ) research. By emphasizing the necessity of differentiating support strategies for diverse student populations, the study aids in formulating effective practices for institutions to enhance student well-being in the context of remote work and learning.

Conducting comparative analyses of social justice leadership: Creating an international research team from diverse country, policy and education system contexts

This article is concerned with considerations for conducting comparative analyses, with a focus on the process of creating a diverse international research team committed to investigating equity issues in education and society. Following brief background information on the International School Leadership Development Network (ISLDN), provided to contextualise the author team and the article’s discussion, the main sections focus on conducting comparative equity research and related methodological considerations. The authors explore the development of specific research methods which they consider to hold significant potential for supporting comparative methodology: the Bacchi approach to policy analysis; and the Delphi method of eliciting the views of groups of respondents. The article offers new perspectives on conducting comparative analyses. The conclusion invites critical reflection on this research team’s development of understandings and methodological approaches to conducting comparative research to critique social justice leadership.

Analysis of NINDS Health Disparities and Health Equity Research Portfolio, 2016-2020: Results and a Process for Transparency, Accuracy, and Reliability.

As detailed throughout this special issue, the National Institute of Neurological Disorders and Stroke (NINDS) recently undertook a strategic planning effort to guide the Institute's efforts and priorities in health disparities and health equity (HD/HE) research. One input into this effort was to conduct a 5-year longitudinal, in-depth analysis of NINDS-supported HD/HE research newly funded between the years 2016 and 2020. The goals of this analysis were to describe NINDS's portfolio according to consistent, contemporary definitions and HD/HE disciplinary theory. This required the development of a novel, systematic, and validated analysis protocol. The portfolio analysis was designed to inform the recommendations of an expert working group convened by the NINDS and internal efforts to support high-priority research, training, and infrastructure efforts. NINDS staff developed and validated this HD/HE research portfolio analysis protocol. Ultimately, HD/HE projects were characterized by their disease focus, populations of study, the health equity determinant(s) addressed, and the type and phase of research being conducted. For all interventional research, there was further assessment of the type and setting of intervention delivery as well as utilization of evidence-based community engagement and intervention sustainability approaches. A total of 58 new HD/HE research projects were funded from 2016 to 2020. The results of the descriptive analysis described here help provide a holistic picture of NINDS's HD/HE research portfolio, revealing strengths and gaps in the portfolio as well as opportunities ripe for future investment. NINDS developed a standardized HD/HE research categorization methodology with imbedded quality control checks that is intended to be transparent, accurate, and reproducible. The results of this HD/HE research portfolio analysis will serve as a baseline from which to assess the success of NINDS's research investments going forward.

Advancing Health Equity in Neurologic Disorders and Stroke: Stakeholder Insights Into Health Disparities, Research Gaps, and Potential Interventions.

The purpose of this study was to analyze the National Institute of Neurological Disorders and Stroke (NINDS) Request for Information (RFI) input from the public-including health care providers, researchers, patients, patient advocates, caregivers, advocacy organizations, professional societies, and private and academic stakeholders with an interest in health disparities (HDs) in neurologic disease. RFI questions were structured to solicit input on what stakeholders believe are neurologic disease HD research priorities, drivers of health inequity, and potential interventions. Furthermore, these stakeholder insights were examined within the context of contemporary scientific literature and research frameworks on health equity and health disparities. The NINDS published a RFI from March 31 to July 15, 2020. The RFI analysis presented here is part of a larger strategic planning process aimed to guide future NINDS efforts in neurologic disorder health equity (HE) research and training. The public commented on facilitators of HDs, populations that experience HDs (HDPs), potential interventions, and research opportunities related to HDs in neurologic disease and/or care in the United States across the lifespan. Responses were analyzed using qualitative methodology. Frequently suggested interventions were thematically clustered using the interpretive phenomenological analysis methodology and are presented in this article to provide a stakeholder-identified roadmap for advancing HE. Respondents identified socioecological factors as driving HDs in 89% of determinants reported. Stakeholder-reported HD determinants and subsequent interventions could be classified into the following conceptual categories: HDP neurospecialty care access, innovative HDP engagement and research inclusion strategies, and development of a well-trained clinician-scientist HD workforce. Clustering of the feedback from patient and patient-adjacent respondents (i.e., caretakers and patient advocates) highlighted the prevalence of patient-provider interpersonal factors and limited resources driving access-to-care barriers among their sentiments. Respondent sentiments suggest prioritization of social determinants of health (SDOH) research, shifting away from the common target of biological and behavioral themes addressed in the existing body of HE research provided by the stakeholder. Overall, respondents suggest focusing research prioritization on access to care, engagement across the HE research and care landscape, and HE workforce development.