Intervening in the Cancer Care System: An Analysis of Equity-Focused Nurse Navigation and Patient-Reported Outcomes.

BACKGROUND: Nurse navigation can improve quality of cancer care and reduce racial disparities in care outcomes. Addressing persistent structurally-rooted disparities requires research on strategies that support patients by prompting structural changes to systems of care. We applied a novel conceptualization of social support to an analysis of racial equity-focused navigation and patient-reported outcomes. METHOD: We applied an antiracism lens to create a theory-informed definition of system-facing social support: intervening in a care system on a patient's behalf. Participants were adults with early-stage breast or lung cancer, who racially identified as Black or White, and received specialized nurse navigation (n = 155). We coded navigators' clinical notes (n = 3,251) to identify instances of system-facing support. We then estimated models to examine system-facing support in relation to race, perceived racism in health care settings, and mental health. RESULTS: Twelve percent of navigators' clinical notes documented system-facing support. Black participants received more system-facing support than White participants, on average (b = 0.78, 95% confidence interval [CI]: [0.25, 1.31]). The interaction of race*system-facing support was significant in a model predicting perceived racism in health care settings at the end of the study controlling for baseline scores (b = 0.05, 95% CI [0.01, 0.09]). Trends in simple slopes indicated that among Black participants, more system-facing support was associated with slightly more perceived racism; no association among White participants. DISCUSSION: The term system-facing support highlights navigators' role in advocating for patients within the care system. More research is needed to validate the construct system-facing support and examine its utility in interventions to advance health care equity.

"We grew up in the church": A critical discourse analysis of Black and White rural residents' perceptions of mental health.

RATIONALE: Known as the "Black-White mental health paradox," Black Americans typically report better mental health than White Americans, despite chronic exposure to the psychologically harmful effects of racism and discrimination. Yet, researchers rarely examine how mental health is experienced across racial groups in economically distressed rural regions where all residents have disproportionately less access to mental healthcare resources. OBJECTIVE: The purpose of this study was to explore how the racialized social system potentially contributes to the mental health beliefs and attitudes of racially majoritized and minoritized rural residents. METHODS: We conducted a secondary analysis of 29 health-focused oral history interviews from Black American (n = 16) and White American (n = 13) adults in rural North Carolina. Through critical discourse analysis, we found nuanced discourses linked to three mental-health-related topics: mental illness, stressors, and coping. RESULTS: White rural residents' condemning discourses illustrated how their beliefs about mental illnesses were rooted in meritocratic notions of individual choice and personal responsibility. Conversely, Black rural residents offered compassionate discourses toward those who experience mental illness, and they described how macro-level mechanisms can affect individual well-being. Stressors also differed along racial lines, such that White residents were primarily concerned about perceived social changes, and Black residents referenced experiences of interpersonal and structural racism. Related to coping, Black and White rural residents characterized the mental health benefits of social support from involvement in their respective religious organizations. Only Black residents signified that a personal relationship with a higher power was an essential positive coping mechanism. CONCLUSIONS: Our findings suggest that belief (or disbelief) in meritocratic ideology and specific religious components could be important factors to probe with Black-White patterning in mental health outcomes. This research also suggests that sociocultural factors can disparately contribute to mental health beliefs and attitudes among diverse rural populations.

Mechanisms to enhance racial equity in health care: Developing a model to facilitate translation of the ACCURE intervention.

Background: As medical and public health professional organizations call on researchers and policy makers to address structural racism in health care, guidance on evidence-based interventions to enhance health care equity is needed. The most promising organizational change interventions to reduce racial health disparities use multilevel approaches and are tailored to specific settings. This study examines the Accountability for Cancer Care through Undoing Racism and Equity (ACCURE) intervention, which changed systems of care at two U.S. cancer centers and eliminated the Black-White racial disparity in treatment completion among patients with early-stage breast and lung cancer. Purpose: We aimed to document key characteristics of ACCURE to facilitate translation of the intervention in other care settings. Methods: We conducted semi-structured interviews with participants who were involved in the design and implementation of ACCURE and analyzed their responses to identify the intervention's mechanisms of change and key components. Results: Study participants (n = 18) described transparency and accountability as mechanisms of change that were operationalized through ACCURE's key components. Intervention components were designed to enhance either institutional transparency (e.g., a data system that facilitated real-time reporting of quality metrics disaggregated by patient race) or accountability of the care system to community values and patient needs for minimally biased, tailored communication and support (e.g., nurse navigators with training in antiracism and proactive care protocols). Conclusions: The antiracism principles transparency and accountability may be effective change mechanisms in equity-focused health services interventions. The model presented in this study can guide future research aiming to adapt ACCURE and evaluate the intervention's implementation and effectiveness in new settings and patient populations.

Institutional Reform to Promote Antiracism: A Tool for Developing an Organizational Equity Action and Accountability Plan.

Racism is a public health problem. Systems, structures, policies, and practices perpetuate a culture built on racism. Institutional reform is needed to promote antiracism. This article describes 1) a tool used to develop an equity action and accountability plan (EAAP) that promotes antiracism in the Department of Health Behavior at the University of North Carolina at Chapel Hill's Gillings School of Global Public Health, 2) strategies that were developed, and 3) short-term outcomes and lessons learned. A study coordinator, not affiliated with the Department of Health Behavior, was hired to collect qualitative data that documented the lived experiences of students and alumni of color (ie, racial and ethnic minority students) over time in the department. Seeking action from faculty and departmental leadership, students engaged in collective organizing covered the department chair's office door with notes describing microaggressions, and visited faculty one-on-one to demand action. In response, 6 faculty members volunteered to form the Equity Task Force (ETF) to explicitly address students' concerns. The ETF identified priority areas for action based on 2 student-led reports, gathered resources from other institutions and the public health literature, and examined departmental policies and procedures. The ETF drafted the EAAP, solicited feedback, and revised it according to 6 priority strategies with actionable steps: 1) transform culture and climate, 2) enhance teaching, mentoring, and training, 3) revisit performance and evaluation of faculty and staff, 4) strengthen recruitment and retention of faculty of color, 5) increase transparency in student hiring practices and financial resources, and 6) improve equity-oriented research practices. This planning tool and process can be used by other institutions to achieve antiracist reform.

Youth Empowered Advocating for Health (YEAH): Facilitating Partnerships Between Prevention Scientists and Black Youth to Promote Health Equity.

Structural racism inflicts a disproportionate burden of stress and trauma within Black communities, resulting in physical and mental health inequities that impact Black youth. Yet few multilevel interventions exist to address these deeply rooted inequities from a preventive standpoint, and even fewer are informed by the participatory input of the impacted communities. To bridge these gaps, we developed a community-based prevention strategy that promotes agency and active resistance to structural racism, Youth Empowered Advocating for Health (YEAH), and implemented it across various settings. We outline the development, implementation, and expansion of YEAH as a tool for promoting optimal health among Black communities. Lastly, we discuss lessons learned and offer a framework outlining key principles for prevention scientists to partner with Black youth and engage them in translational science to address structural racism. This framework is aimed at driving policies, practices, and procedures that promote equitable and sustainable change for and with Black communities.

Did the 2015 USPSTF Abnormal Blood Glucose Recommendations Change Clinician Attitudes or Behaviors? A Mixed-Method Assessment.

BACKGROUND: In 2015, the US Preventive Services Task Force (USPSTF) revised clinical recommendations to more broadly recommend abnormal blood glucose screening and more clearly recommend referral to behavioral interventions for adults with prediabetes. OBJECTIVE: To assess the effects of the 2015 USPSTF recommendation changes on abnormal blood glucose screening and referral to behavioral interventions, and to examine physicians' perceptions of the revised recommendation. DESIGN: We utilized a sequential, dependent mixed-methods triangulation design. PARTICIPANTS: A total of 33,444 patients meeting USPSTF abnormal blood glucose screening criteria within 15 health system-affiliated primary care practices and 20 primary care physicians in North Carolina. MAIN MEASURES: We assessed monthly abnormal blood glucose screening rate and monthly referral rate to behavioral interventions. To estimate trend changes in outcomes, we used segmented linear regression analysis of interrupted time-series data. We gathered physicians' perspectives on the 2015 USPSTF abnormal blood glucose recommendation including awareness of, agreement with, adoption of, and adherence to the recommendation. To analyze qualitative data, we used directed content analysis. KEY RESULTS: There was a slight significant change in trend in abnormal blood glucose screening rates post-recommendation. There was a slight, statistically significant decrease in referral rates to behavioral interventions post-recommendation. Physicians were generally unaware of the revisions to the 2015 USPSTF abnormal blood glucose recommendation; however, once the recommendations were described, physicians agreed with the screening recommendation but felt that the behavioral intervention referral recommendation was hard to implement. CONCLUSION: The 2015 USPSTF abnormal blood glucose guideline had little to no effect on abnormal blood glucose screening or referral to behavioral interventions in North Carolina practices. Potential interventions to improve these rates could include clinical decision tools embedded in the electronic health record and better referral systems for community-based diabetes prevention programs.

Using Participatory Methods to Assess PrEP Interest and Uptake Among Young People Living in the Southeastern US: A Mixed Methods Assessment.

Adolescents and young adults (AYA; 13-24 years-old) comprise 22% of new HIV infections in the United States (US), most of whom live in the South. We used the situated-Information, Motivation, Behavioral skills (sIMB) model to identify priorities for intervention on multi-level factors that influence HIV preventive care among Black AYA in Durham, North Carolina. We conducted two participatory workshops (ages 13-17, N = 6; ages 18-24, N = 7) to engage youth about how to discuss HIV. We also assessed sIMB constructs from a separate quantitative sample of youth to contextualize the workshop findings (N = 80). HIV knowledge was low overall, but lower among younger Black AYA, suggesting a need for comprehensive sexual education. Trusted adults provided sexual health information, motivation for health maintenance, and behavioral skills support. HIV prevention interventions should provide comprehensive sexual health education to Black AYA, be age-specific, and include social supporters like parents, teachers, and community members.

The MI-PHOTOS Project: Understanding the Health and Wellbeing of Rural Historically Marginalized Mothers Through Photovoice.

Despite the persistent health inequities faced by rural women in the United States, few researchers have partnered with women in rural communities to co-create sustainable change. To fill this gap, Mothers Improving Pregnancy and Postpartum Health Outcomes Through stOry Sharing (MI-PHOTOS) employed a community-based participatory research (CBPR) approach by partnering with mothers, community leaders, and community-based organizations in Robeson County, North Carolina, a rural, racially diverse county. The project's aims were (a) to promote maternal health by listening to mothers' stories of having and raising children in their community and (b) to develop a shared understanding of these mothers' strengths and challenges. MI-PHOTOS utilized photovoice, an exploratory and qualitative CBPR methodology. Grounded theory guided data analysis. During photovoice discussions, conversation focused on maternal experiences and evoked strengths, facilitators, and barriers impacting maternal health. Themes focused on (a) MI-PHOTOS serving as a social support group for the community and family stressors that mothers faced and (b) the necessity of professional support programs. Three overarching findings emerged during this process: (a) MI-PHOTOS as an informal support group, (b) mental health stigmatization, and (c) the need to bridge home visiting programs with peer and confidential therapeutic services. Future work should incorporate mothers' and communities' strengths into program development by drawing on existing home visiting programs, identifying opportunities for peer-support, and creating referral networks for individual, confidential therapeutic services. Through continued community partnership, we can generate fuller understandings of mothers' experiences of having and raising children and ultimately promote health equity among rural mothers.

Expanding the Reach of an Evidence-Based, System-Level, Racial Equity Intervention: Translating ACCURE to the Maternal Healthcare and Education Systems.

The abundance of literature documenting the impact of racism on health disparities requires additional theoretical, statistical, and conceptual contributions to illustrate how anti-racist interventions can be an important strategy to reduce racial inequities and improve population health. Accountability for Cancer Care through Undoing Racism and Equity (ACCURE) was an NIH-funded intervention that utilized an antiracism lens and community-based participatory research (CBPR) approaches to address Black-White disparities in cancer treatment completion. ACCURE emphasized change at the institutional level of healthcare systems through two primary principles of antiracism organizing: transparency and accountability. ACCURE was successful in eliminating the treatment completion disparity and improved completion rates for breast and lung cancer for all participants in the study. The structural nature of the ACCURE intervention creates an opportunity for applications in other health outcomes, as well as within educational institutions that represent social determinants of health. We are focusing on the maternal healthcare and K-12 education systems in particular because of the dire racial inequities faced by pregnant people and school-aged children. In this article, we hypothesize cross-systems translation of a system-level intervention exploring how key characteristics of ACCURE can be implemented in different institutions. Using core elements of ACCURE (i.e., community partners, milestone tracker, navigator, champion, and racial equity training), we present a framework that extends ACCURE's approach to the maternal healthcare and K-12 school systems. This framework provides practical, evidence-based antiracism strategies that can be applied and evaluated in other systems to address widespread structural inequities.

Race and gender differences in abnormal blood glucose screening and clinician response to prediabetes: A mixed-methods assessment.

The projected three-fold increase in diabetes burden by 2060 in the United States will affect certain race and gender groups disproportionately. The objective of this mixed-methods study was to assess differences in prediabetes screening and clinician response to prediabetes by patient race and gender. We utilized data from 18,742 patients seen between 11/1/15 and 4/30/17 who met criteria for blood glucose screening by the 2015 US Preventive Service Task Force recommendation and had at least one visit to a primary care practice within a large, academic health system located in North Carolina. We utilized generalized estimating equations with logistic regression to assess race and gender differences in two outcomes: prediabetes screening and clinician response to prediabetes. We conducted twenty in-depth interviews (October 2018-May 2019) with physicians to assess their approach to screening for and treating prediabetes. Black patients had 11% higher odds (95% CI:1.02-1.20) of being screened for prediabetes than White patients. Men had 19% higher odds (95% CI:1.09-1.30) of being screened for prediabetes than women. There were no significant differences in clinician response to prediabetes by patient race or gender. Qualitatively, physicians reported a non-systematic approach to prediabetes screening and follow-up care related to: 1) System-level barriers to screening and treatment; 2) Implicit bias; 3) Patient factors; and 4) Physician preferences for prediabetes treatment. Targeted risk-based screening for prediabetes along with increased treatment for prediabetes are critical for preventing diabetes and reducing diabetes-related disparities.

How Can We PrEP? Exploring Black MSM's Experiences With Pre-Exposure Prophylaxis Through Photovoice.

Pre-exposure prophylaxis (PrEP) can reduce the risk of HIV infection by over 90% among those at high risk via sexual transmission. PrEP acceptance and adherence remains low among those at highest risk of HIV, including Black men who have sex with men (MSM) in the southern U.S. This community-based participatory research project explored Black MSM's experiences with PrEP in North Carolina through photovoice, a methodology using photography and discussion. Our findings highlighted challenges and opportunities with PrEP, including intersectional stigma, the need for improved patient-provider education, and the role of community-based organizations in closing patient-provider gaps. This work is a first step towards understanding the daily lives of Black MSM on PrEP in the Triangle Region of North Carolina, including barriers and facilitators to PrEP use. Implications for public health practice highlight the need for conducting community-level interventions, integrating PrEP into primary care, and normalizing PrEP through community conversations.

Engaging community stakeholders in research on best practices for clinical genomic sequencing.

Aim: Maximizing the utility and equity of genomic sequencing integration in clinical care requires engaging patients, their families, and communities. The NCGENES 2 study explores the impact of engagement between clinicians and caregivers of children with undiagnosed conditions in the context of a diagnostic genomic sequencing study. Methods: A Community Consult Team (CCT) of diverse parents and advocates for children with genetic and/or neurodevelopmental conditions was formed. Results: Early and consistent engagement with the CCT resulted in adaptations to study protocol and materials relevant to this unique study population. Discussion: This study demonstrates valuable contributions of community stakeholders to inform the implementation of translational genomics research for diverse participants.

Missing Mayberry: How whiteness shapes perceptions of health among white Americans in a rural Southern community.

Elucidating how the racialized social system of whiteness affects the health of white Americans is critically important given current trends. Mirroring the nation, whites in rural North Carolina are currently experiencing increases in early mortality at greater levels than any other racial group in the state. Health focused oral history interviews conducted with whites (n = 13) in an economically distressed, rural community provide insight into potential determinants of this trend. Interview transcripts were coded and analyzed using a modified grounded theory approach. Analysis was guided by the whiteness and health framework, which considers how structural racism is both health promoting and health harmful for whites. Analysis highlighted three key themes: color-blind ideology, belief in the American Creed, and resistance to change. Whiteness influenced these rural whites' beliefs such that they were blind to the experiences of people of color in their community. Their explicit and figurative nostalgia for The Andy Griffith Show's idyllic town of Mayberry (a fictional Southern community devoid of Black American characters and racial tension during the 1960s) exposed color-blind expectations of what it means to have a healthy community. Additionally, interviewees attributed health status to individual effort and health behaviors, rather than considering how macro-level social determinants impact health. Individual level blame and resistance to change influenced interviewees' political views and suspicion of some social programs that could benefit the health of their community. These meritocratic beliefs about hard-work and self-sufficiency have implications for individual and community level health outcomes.

"What I wish my doctor knew about my life": Using photovoice with immigrant Latino adolescents to explore barriers to healthcare.

BACKGROUND: Latinos in the USA have reported more frequent discriminatory treatment in healthcare settings when compared to their White counterparts. In particular, foreign-born Latinos report discrimination more than Latinos born in the USA. Such patient-reported racial/ethnic discrimination appears to contribute to specific health consequences, including treatment seeking delays, interruptions in care, and medical mistrust. Immigrant Latino adolescents in the USA experience a variety of health disparities, yet little is known about their views of the healthcare experience, their perceptions of discriminatory treatment, or ways in which they would like their relationships with healthcare providers to be different. METHODS: This work, based in a larger interdisciplinary social work-led initiative, used photovoice with two groups of immigrant Latino adolescents to explore the topic "what I wish the doctor knew about my life." The findings were used to engage healthcare stakeholders as part of a pilot intervention aimed at decreasing provider bias toward immigrant Latino youth. RESULTS/DISCUSSION: Findings illuminated ways that the immigrant experience affects the lives and health of Latino adolescents in North Carolina. To improve their health, it is critical to understand, from their perspectives, the ways their lives can be complicated by experiences of migration, stereotypes, and cross-cultural communication challenges and how their interactions with authority figures in one sector, such as education, influence interactions in health care. Understanding the healthcare barriers faced by immigrant Latino youth is critical to any effort to improve the system of care for immigrant Latino populations.

Making a difference in medical trainees' attitudes toward Latino patients: A pilot study of an intervention to modify implicit and explicit attitudes.

Negative attitudes and discrimination against Latinos exist in the dominant U.S. culture and in healthcare systems, contributing to ongoing health disparities. This article provides findings of a pilot test of Yo Veo Salud (I See Health), an intervention designed to positively modify attitudes toward Latinos among medical trainees. The research question was: Compared to the comparison group, did the intervention group show lower levels of implicit bias against Latinos versus Whites, and higher levels of ethnocultural empathy, healthcare empathy, and patient-centeredness? We used a sequential cohort, post-test design to evaluate Yo Veo Salud with a sample of 69 medical trainees. The intervention setting was an academic medical institution in a Southeastern U.S. state with a fast-growing Latino population. The intervention was delivered, and data were collected online, between July and December of 2014. Participants in the intervention group showed greater ethnocultural empathy, healthcare empathy, and patient-centeredness, compared to the comparison group. The implicit measure assessed four attitudinal dimensions (pleasantness, responsibility, compliance, and safety). Comparisons between our intervention and comparison groups did not find any average differences in implicit anti-Latino bias between the groups. However, in a subset analysis of White participants, White participants in the intervention group demonstrated a significantly decreased level of implicit bias in terms of pleasantness. A dose response was also founded indicating that participants involved in more parts of the intervention showed more change on all measures. Our findings, while modest in size, provide proof of concept for Yo Veo Salud as a means for increasing ethno-cultural and physician empathy, and patient-centeredness among medical residents and decreasing implicit provider bias toward Latinos.

Community-Guided Focus Group Analysis to Examine Cancer Disparities.

BACKGROUND: Accountability for Cancer Care through Undoing Racism™ and Equity (ACCURE) is a systems-change intervention addressing disparities in treatment initiation and completion and outcomes for early stage Black and White breast and lung cancer patients. Using a community-based participatory research (CBPR) approach, ACCURE is guided by a diverse partnership involving academic researchers, a nonprofit community-based organization, its affiliated broader based community coalition, and providers and staff from two cancer centers. OBJECTIVES: This paper describes the collaborative process our partnership used to conduct focus groups and to code and analyze the data to inform two components of the ACCURE intervention: 1) a "power analysis" of the cancer care system and 2) the development of the intervention's training component, Healthcare Equity Education and Training (HEET), for cancer center providers and staff. METHODS: Using active involvement of community and academic partners at every stage in the process, we engaged Black and White breast and lung cancer survivors at two partner cancer centers in eight focus group discussions organized by race and cancer type. Participants were asked to describe "pressure point encounters" or critical incidents during their journey through the cancer system that facilitated or hindered their willingness to continue treatment. Community and academic members collaborated to plan and develop materials, conduct focus groups, and code and analyze data. CONCLUSIONS: A collaborative qualitative data analysis process strengthened the capacity of our community-medical-academic partnership, enriched our research moving forward, and enhanced the transparency and accountability of our research approach.

Using Photovoice to Understand Barriers to and Facilitators of Cardiovascular Health Among African American Adults and Adolescents, North Carolina, 2011-2012.

INTRODUCTION: Cardiovascular disease is the leading cause of death in the United States, and mortality rates are higher among African Americans than among people of other races/ethnicities. We aimed to understand how African American adults and adolescents conceptualize cardiovascular health and perceive related barriers and facilitators. METHODS: This qualitative study was conducted as formative research for a larger study, Heart Healthy Lenoir, which aimed to reduce cardiovascular disease disparities among African Americans in eastern North Carolina, part of the widely-known "stroke belt" that runs through the southeastern United States. Using photovoice, a community-based participatory research method, we conducted eight 90-minute photovoice sessions with 6 adults and 9 adolescents in Lenoir County, North Carolina. Topics for each discussion were selected by participants and reflected themes related to cardiovascular health promotion. All sessions were transcribed and coded using a data-driven, inductive approach. RESULTS: Participants conceptualized cardiovascular health to have mental, spiritual, and social health dimensions. Given these broad domains, participants acknowledged many ecological barriers to cardiovascular health; however, they also emphasized the importance of personal responsibility. Facilitators for cardiovascular health included using social health (eg, family/community relationships) and spiritual health dimensions (eg, understanding one's body and purpose) to improve health behaviors. CONCLUSION: The perspectives of African American adults and adolescents elicited through this formative research provided a strong foundation for Heart Healthy Lenoir's ongoing engagement of community members in Lenoir County and development and implementation of its intervention to prevent cardiovascular disease.

Engaging underserved populations in Affordable Care Act-required needs assessments.

This article presents information on an Affordable Care Act-mandated community health needs assessment process, which brought four hospitals and a foundation in Pennsylvania together to imbue the assessment with community contributions. Community health needs assessments that engage underserved communities can be powerful symbols of hospitals' interest in and commitment to finding solutions.