Health Equity Research Research Articles

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.

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.

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.

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.

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.

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.

Diversity, Equity, Inclusion, and Health Inequities Training in Neurologic Disorders and Stroke: Analysis and Recommendations From the NINDS Advisory Council Working Group.

In 2020, the National Institute of Neurological Disorders and Stroke (NINDS) leadership asked its Advisory Council to review NINDS efforts in the domains of diversity, equity, inclusion, and health inequities. Part of these efforts involved a focus on health equity training and health equity research workforce diversification activities. The objective of this article was to summarize the findings and make recommendations regarding these training activities. A subgroup of the National Advisory Neurological Disorders and Stroke Council Working Group for Health Disparities and Inequities in Neurological Disorders was engaged to advise NINDS leadership in the domain of diversity in health equity training. Activities included video teleconference meetings, multiple consultations with experienced leaders in the field, independent writing assignments, and an open public discussion as part of the NINDS HEADWAY workshop held on September 22-24, 2021. The working group recommends support for 2 distinct types of training activities: one designed for scientists from historically under-represented backgrounds and the second designed for scientists of all backgrounds performing health inequities research. Support for grant writing workshops and establishment of multi-institutional mentorship networks are recommended as potentially especially high-yield activities. The working group recommends that all NINDS-supported investigators should have sufficient diversity, equity, and inclusion training to be prepared and qualified to mentor trainees from under-represented backgrounds and mentor trainees engaged in health disparities research; there should be no "diversity tax" placed on established investigators from under-represented backgrounds to shoulder all the mentorship responsibilities. Among other recommendations, training in health disparities research should include a focus on interventional studies to alleviate inequities as well as social science and qualitative methods. There is a great deal of work to do in the field of diversity, equity, inclusion, and health inequities training, but we are optimistic that the activities outlined here, if fully implemented, will set us on the right track.

Unsettling Settler Colonialism in Research: Strategies Centering Native American Experience and Expertise in Responding to Substance Misuse and Co-occurring Sexual Risk-Taking, Alcohol-Exposed Pregnancy, and Suicide Prevention Among Young People.

Native American (NA) populations in the USA (i.e., those native to the USA which include Alaska Natives, American Indians, and Native Hawaiians) have confronted unique historical, sociopolitical, and environmental stressors born of settler colonialism. Contexts with persistent social and economic disadvantage are critical determinants of substance misuse and co-occurring sexual risk-taking and suicide outcomes, as well as alcohol exposed pregnancy among NA young people (i.e., adolescents and young adults). Despite intergenerational transmission of resistance and resiliencies, NA young people face continued disparities in substance misuse and co-occurring outcomes when compared to other racial and ethnic groups in the USA. The failure in progress to address these inequities is the result of a complex set of factors; many of which are structural and rooted in settler colonialism. One of these structural factors includes barriers evident in health equity research intended to guide solutions to address these disparities yet involving maintenance of a research status quo that has proven ineffective to developing these solutions. Explicitly or implicitly biased values, perspectives, and practices are deeply rooted in current research design, methodology, analysis, and dissemination and implementation efforts. This status quo has been supported, intentionally and unintentionally, by researchers and research institutions with limited experience or knowledge in the historical, social, and cultural contexts of NA communities. We present a conceptual framework illustrating the impact of settler colonialism on current research methods and opportunities to unsettle its influence. Moreover, our framework illustrates opportunities to resist settler colonialism in research. We then focus on case examples of studies from the Intervention Research to Improve Native American Health program, funded by the NIH, that impact substance use and co-occurring health conditions among NA young people.

Supporting implementation science and health equity in cancer prevention and control through research networks

The Cancer Prevention and Control Research Network (CPCRN) is a national network of academic, public health, and community organizational partners across multiple geographic sites who collaborate to reduce the cancer burden in diverse communities. Given key recommendations that suggest the need for cross-disciplinary collaboration in cancer prevention and control, we sought to explore the historical and contemporary evolution of health equity and disparities research as an area of focus within the CPCRN over time. We conducted 22 in-depth interviews with former and current leaders, co-investigators, and other members of the network. Several key themes emerged from data that were analyzed and interpreted using a constructivist, reflexive, thematic analysis approach. Nearly all participants reported a strong focus on studying health disparities since the inception of the CPCRN, which offered the network a distinct advantage in recent years for incorporating an intentional focus on health equity. Recent law enforcement injustices and the inequities observed during the COVID-19 pandemic have further invigorated network activities around health equity, such as development of a health equity-focused workgroup toolkit, among other cross-center activities. Several participants noted that, in terms of deep, meaningful, and impactful health equity-oriented research, there are still great strides for the network to make, while also acknowledging CPCRN as well-aligned with the national dialogue led by federal agency partners around health equity. Finally, several future directions were mentioned by the participants, including a focus on supporting a diverse workforce and engaging organizational partners and community members in equity-focused research. Findings from these interviews provide direction for the network in advancing the science in cancer prevention and control, with a strengthened focus on health equity.

Grassroots Approach to Forming a Diversity, Equity, and Inclusion Committee in an Academic Radiology Department

Radiology is among the medical specialties that have made the fewest gains in closing the gap in underrepresented minorities and women. Diversity, equity, and inclusion (DEI) initiatives are important for promoting healthy learning environments for trainees, health equity for patients, and equitable career development opportunities for employees, all of which contribute to innovation in today's competitive health care environment. DEI committees can self-organize or form from institutional directives. These committees can implement impactful projects in multiple domains in education, recruitment and retention, department culture, and health equity research. This article describes the formation of a grassroots DEI committee, key initiatives and strategies, and structures for accountability. ©RSNA, 2023 Quiz questions for this article are available in the supplemental material.

Sense of community and mental health: a cross-sectional analysis from a household survey in Wisconsin

BackgroundIn the USA, one in five adults live with a mental illness, and researchers have estimated that nearly half of the population will have a mental illness over the course...

SA42 Innovative Methods for Integrating Social Determinants of Health Data with Administrative Claims to Facilitate Health Equity Research

The Covid-19 pandemic highlighted the importance of considering Social Determinants of Health (SDoH) in healthcare research. Administrative claims databases are widely used for research, but often lack SDoH data or sufficient transparency in how these data were obtained. This study describes innovative methods for integrating SDoH data with administrative claims to facilitate health equity research. The HealthCore Integrated Research Database (HIRD) contains medical and pharmacy claims from a large, national US payer starting in 2006 and includes commercial (Comm), Medicare Advantage (MCare), and Medicaid (MCaid) populations. The HIRD includes individually identifiable information, which was used for linking with SDoH data from the following sources: national neighborhood-level data from the American Community Survey, the Food Access Research Atlas, and the National Center for Health Statistics’ urbanicity classification; and member-level data on race/ethnicity from enrollment files, medical records, self-attestation, and imputation algorithms. We examined SDoH metrics for members enrolled as of 05-July-2022 and compared them to the respective US national data using descriptive statistics. We also examined telehealth utilization in 2022. SDoH data were available for ∼95% of currently active members in the HIRD (Comm/MCare/MCaid 12.5m/1m/7.6m). Socioeconomic characteristics at the neighborhood-level differed by membership type and vs. national data: % of members with at least a high-school education (90/88/84 vs. 87); median family income ($98k/$76k/$70k vs. $82k); % of members living in low-income low-food-access tracts (9/14/18 vs. 13); urban (57/52/47 vs. 61). At the member-level, the % of White Non-Hispanics, Black Non-Hispanics, Asian Non-Hispanics, and Hispanics were 61/6/5/6 (Comm), 76/12/2/2 (MCare), and 45/26/5/19 (MCaid). Imputation contributed 15-60% of race/ethnicity values across membership types. Telehealth utilization increased with socioeconomic status. We successfully integrated SDoH data from a variety of sources with administrative claims. SDoH characteristics differed by type of insurance coverage and were associated with differences in telehealth utilization.

Feasibility and acceptability of social determinants of health data collection in the context of a Children’s Oncology Group trial.

10010 Background: Children who are Black, Hispanic or of proxied low socioeconomic status experience inferior survival outcomes despite receipt of uniform treatment on Children’s Oncology Group (COG) trials. Investigation of mechanisms underlying these disparities and evaluation of interventions to address them has been limited by inadequate data. Prior COG trials have collected child race, ethnicity, insurance and zip code—non-modifiable data elements that are prone to misclassification bias—as proxies for exposure to adverse social determinants of health (SDOH). Collection of parent-reported SDOH data provides key information not previously assessed in COG trials, including modifiable exposures such as household material hardship (HMH): food, housing, utility or transportation insecurity. We report the preliminary feasibility and acceptability of the first COG trial to prospectively embed SDOH data collection. Methods: ANBL1531 (NCT03126916), the current frontline, groupwide COG trial for patients with high-risk neuroblastoma, was amended in September 2019 to include an opt-in, correlative aim to evaluate parent-reported SDOH. Parents of patients < 18 years could opt-in during initial ANBL1531 consent to complete a brief, single-timepoint survey at their enrolling site during Induction Cycle 1. Survey domains included parent-reported demographics, HMH, household income, and social support. Paper/pencil surveys available in English, Spanish or French were self-completed or read-aloud by site personnel and could be administered in any language with an interpreter. Surveys were submitted to a central disparities study team for data cleaning and entry into an electronic database. Results: As of December 31, 2022, 360/413 eligible participants opted-in to the embedded SDOH aim across 101 COG sites (87.2% consent rate). Among participants, 316 surveys (87.8%) were completed a median of 11 days post-enrollment. Four (1.1%) parents declined survey completion (3 withdrew consent). Reasons for non-completed surveys included: survey still pending within protocol-specified window (n = 10), institutional COVID-19 restrictions (n = 6), site scheduling issues (n = 6), patient came off ANBL1531 protocol (n = 5) and unknown (n = 13). Data missingness for HMH, the primary SDOH of interest, was 0.8%. Surveys were administered in English, Spanish, French, Vietnamese, Arabic, Mandarin and Tamil. Conclusions: Collection of parent-reported SDOH data as an optional, embedded component of a groupwide COG trial is feasible and acceptable, as demonstrated by remarkable willingness to participate and infrequency of missing data. Incorporation of this approach in future National Clinical Trials Network trials is essential to inform impactful health equity research, including the development and evaluation of targeted interventions to address outcome disparities.

Contextualizing physical activity in rural adults: Do relationships between income inequality, neighborhood environments, and physical activity exist?

To examine if income inequality, social cohesion, and neighborhood walkability are associated with physical activity among rural adults. Cross-sectional data came from a telephone survey (August 2020-March 2021) that examined food access, physical activity, and neighborhood environments across rural counties in a southeastern state. Multinomial logistic regression models assessed the likelihood of being active versus inactive and insufficiently active versus inactive in this rural population. Coefficients are presented as relative risk ratios (RRRs). Statistical significance was determined using 95% confidence intervals (CIs). All analyses were performed in STATA 16.1. Trained university students administered the survey. Students verbally obtained consent, read survey items, and recorded responses into Qualtrics software. Upon survey completion, respondents were mailed a $10 incentive card and printed informed consent form. Eligible participants were ≥18 years old and current residents of included counties. Respondents in neighborhoods with relatively high social cohesion versus low social cohesion were more likely to be active than inactive (RRR = 2.50, 95% CI: 1.27-4.90, p < 0.01), after accounting for all other variables in the model. Income inequality and neighborhood walkability were not associated with different levels of physical activity in the rural sample. Study findings contribute to limited knowledge on the relationship between neighborhood environmental contexts and physical activity among rural populations. The health effects of neighborhood social cohesion warrant more attention in health equity research and consideration when developing multilevel interventions to improve the health of rural populations.

Costs of (In)visibility: Issues of Disclosure and Data for Health Equity Research with Sexual and Gender Minority Veterans.

Sexual and gender minority (SGM) veterans experience numerous disparities in health conditions, behavioral risks, and social adversities compared with non-SGM veterans. Although survey data have illuminated these differences, SGM veterans remain largely invisible in administrative data such as electronic health records due to lack of sexual orientation and gender identity information. Administrative data hold promise for propelling SGM health equity research, but several issues must be addressed, including weighing the benefits and threats of visibility for SGM people in data sets that are tied to receipt of services.

Improving Care for Veterans Through Health Equity Research.

Improving Care for Veterans Through Health Equity Research.

Answering calls for rigorous health equity research: a cross-sectional study leveraging electronic health records for data disaggregation in Latinos

IntroductionCountry of birth/nativity information may be crucial to understanding health equity in Latino populations and is routinely called for in health services literature assessing cardiovascular disease and risk, but is...