Lessons learned in the practice of community-based participatory research with community partner collaboration in study design and implementation: the community scientist model.

Engagement of community participation is an innovative driver of modern research. However, to benefit the communities being studied, it is imperative to continuously evaluate ethical considerations, the relationship dynamic between researchers and community members, and the responsiveness of research teams to the needs and preferences of communities. Northwestern University's Center for Health Equity Transformation founded a community scientist program in 2018 that implemented a study using the Community-Based Participatory Research (CBPR) model. This project is an ongoing study of heavy metal exposure by geographic location in Chicago. Community scientists from various backgrounds, communities, and organizations formed an advisory panel, partnering with the cancer research team. This commentary describes lessons learned in structuring meaningful community involvement and benefit in CBPR, with a focus on three lessons learned that relate to ethics, relationships, and responsiveness. Our findings lay new groundwork for iteratively shaping best practices in CBPR.

The Dobbs Double Bind: Lessons From Substance Use Disorder on the Conflict Between Privacy and Quality Care.

The Dobbs decision overturned the right to abortion in the United States and allowed states to enact total abortion bans. In addition to restricting access to abortion, laws criminalizing pregnancy outcomes deter providers from offering timely, appropriate care for pregnancy complications. To avoid litigation or prosecution, providers are under pressure to strictly guard the privacy of patient health information related to pregnancy. Perinatal care is at risk of repeating the experience of similar enhanced privacy rules for substance use disorders, which have impeded information sharing and care coordination that improves outcomes.

A Learning Health System Approach to Cancer Survivorship Care Among LGBTQ+ Communities.

PURPOSE: Lesbian, gay, bisexual, transgender, and queer (LGBTQ+) individuals who receive primary care services at community health centers are often referred to external specialty care centers after cancer diagnosis, upon which primary care services are disrupted and may be discontinued because of gaps in communication between primary and oncologic care providers. This qualitative study evaluated barriers and facilitators to effective care coordination for LGBTQ+ patients with cancer and the utility of a novel cancer care coordination tool to mitigate identified barriers. MATERIALS AND METHODS: Semistructured interviews with LGBTQ+ cancer survivors, caregivers to LGBTQ+ persons, clinical team members who provide care to LGBTQ+ patients, and members of community-based organizations that work with LGBTQ+ patients were conducted. Interview analysis was a multistage process, wherein a constant comparison approach was used. Transcripts were reviewed and coded using Atlas.ti Cloud. RESULTS: A total of 26 individuals were interviewed: 10 patients, four caregivers, 10 clinical care team members, and two community organization representatives. Interview analysis yielded insight regarding (1) LGBTQ+ patient experiences engaging with primary and oncologic care at the clinic level and (2) perceptions of patient-provider and provider-provider communication and coordination. CONCLUSION: Interview findings indicate a need for further development of interventions aimed at improving care coordination, patient experience, and outcomes in the cancer care continuum for LGBTQ+ patients. Learning health systems, like the one studied, show great potential for contributing to the development of such interventions.

Intersectionality Between Epigenetics and Cancer Health Disparities Stemming from Social Determinants of Health (SDoH) Through a Gynecologic Oncology Lens: A Narrative Review.

Racial health disparities within gynecologic cancers persist. We aim to explore the impact of epigenetics on these disparities and how social determinants of health fuel this effect. We queried PubMed with terms associated with social determinants of health and epigenetics in the scope of 3 gynecologic cancers: ovarian, endometrial, and cervical. Using the publications found, we highlight various socioeconomic and environmental factors that may influence epigenetic mechanisms and further disparities in cancer incidence, mortality, and treatment. This narrative review exposes existing gaps in evidence and provides recommendations of future preventive efforts that can target the mitigation of gynecologic cancer disparities.

Project MED (Medicine, Exposure, and Development): Promoting Access to Healthcare Education for Historically Underrepresented Groups Through Community Engagement, Sustainability, and Technology.

In the U.S., disparities in the healthcare workforce have led to inadequate health outcomes in communities of historically underserved groups. To address the lack of resources and opportunities in health career education for historically underserved group students, Project MED was established. The mission is to expose high school students to the breadth of opportunities in the healthcare field and to prepare students for successful careers in healthcare. Through 3 main pillars-Learn, Lead, and Launch-Project MED has developed a robust repository of 20 workshops, recruited and trained eight mentors, and curated a database of ≥100 opportunities for over 50 students.

Tackling Gynecologic Cancer Disparities: An Assessment of 2 Interventions for Improving Information Exchange With Racial/Ethnic Communities.

Racial health disparities continue to greatly impact the incidence and mortality rates of gynecologic cancers. Although there are many drivers for these disparities, limited inclusion of vulnerable populations in clinical research and narrowed medical knowledge of patients are large contributors that disproportionately affect racial/ethnic communities. To mitigate these disparities, we must look for avenues that connect patients from these communities to cancer researchers. In this review, we summarize 2 projects that can serve as models for future interventions that promote education and engagement in clinical research for populations most impacted by gynecologic cancer disparities.

Addressing racial disparities in perinatal care for African American/Black individuals in the Chicago community health setting: a qualitative study.

BACKGROUND: There are persistent disparities in maternal and infant perinatal outcomes experienced by Black birthing persons compared with non-Hispanic white (NHW) individuals in the US. The differences in outcomes arise from not only socioeconomic factors and individual health behaviors but also structural racism. Recent research is beginning to elucidate the benefits of patient navigation to support underserved minoritized individuals who experience this constellation of barriers to equitable care. Qualitative research that utilizes both the experiences of Black birthing individuals and the expert opinion of healthcare providers working with them can serve to guide a patient navigation intervention to further decrease disparities in perinatal outcomes. METHODS: We conducted 30 interviews between August and December 2020 with Black birthing individuals in the Chicago metropolitan area and healthcare providers who care for this population both in Chicago and across the nation to explore their experiences, perceptions of barriers to care and ways to decrease inequities. RESULTS: Clinical care team members acknowledged the presence of health disparities experienced by Black pregnant individuals compared with their NHW counterparts stemming from racism, discrimination, and lack of resources. Patients similarly reported personal experiences with these disparities and barriers to care. The successful methods used by clinical care teams to help decrease these differences in the past included patient education on important topics such as breastfeeding and the use of patient advocates. Effectively screening for social determinants of health by someone the patient trusts was also cited as important. Regarding perinatal care practices, clinical care team members described the importance of patient education needs and care team cultural competency. Patients' reported positive and negative experiences corroborated these findings, emphasizing the importance of trust, listening, education, access to care, support, and patient advocacy. Finally, the care team members and patients agreed that active trust-building can help the provider/patient relationship and ultimately improve outcomes. CONCLUSIONS: These qualitative research findings improve the understanding of barriers to care and will help guide development of an intervention to reduce the health disparities experienced by Black pregnant persons.

How Should Representation of Subjects With LEP Become More Equitable in Clinical Trials?

Underrepresentation of individuals with limited English proficiency (LEP) who speak Spanish is ongoing in phase 3 biomedical clinical trials and exacerbates health inequity. This article suggests strategies for increasing representation of Spanish speakers in clinical rials by emphasizing the importance of early engagement with Spanish language communities, inclusive participant recruitment, and collaborative trial design and implementation. Although investigators and institutions administering government-funded research must meet federal requirements for language assistance, journal editors, peer reviewers, institutional review board members, academic health centers, and all beneficiaries of the biomedical and behavioral research enterprise in the United States must motivate linguistic inclusion.

Todavía continúa la subrepresentación de personas con un dominio limitado del inglés (LEP, por sus siglas en inglés) que hablan español en los ensayos clínicos biomédicos de fase 3 y esto exacerba la inequidad sanitaria. Este artículo propone estrategias para aumentar la representación de los hispanohablantes en los ensayos clínicos al resaltar la importancia del compromiso temprano con las comunidades de habla hispana, el reclutamiento inclusivo de participantes y el diseño e implementación de ensayos colaborativos. Aunque los investigadores y las instituciones que realizan las investigaciones financiadas por el gobierno deben cumplir con los requisitos federales respecto de la asistencia lingüística, los editores de revistas, los revisores inter pares, los miembros de las juntas de revisión institucionales, los centros académicos de salud y todos los beneficiarios de las empresas de investigación biomédica y conductual en los Estados Unidos deben motivar la inclusión lingüística.

United States' Obstetrician/Gynecologists' Readiness to Care for Women Affected by Female Genital Cutting.

Background: Female genital cutting (FGC) is a form of gender-based violence with obstetrical and gynecological complications that require recognition and care. Data suggest that United States' physicians are not prepared to care for those who have been affected by this practice. This study evaluated the knowledge and practices of United States' obstetricians and gynecologists to care for patients who have undergone FGC. Materials and Methods: This was a cross-sectional confidential survey distributed electronically to a sample of clinically active members of the American College of Obstetricians and Gynecologists. The survey consisted of questions characterizing care of patients who had undergone FGC and barriers to optimal support. Results: Five hundred forty-eight participants representing a wide range of years in practice, geographical locations, subspecializations, and patient demographics participated. Sixty-six percent of participants had cared for patients who had undergone FGC. Participants' description of their patient population racial/ethnic composition did not correlate with likelihood of treating this patient population. Forty percent of participants reported some form of education about FGC, more often among women, younger physicians, and those in practice for fewer years. Thirty-one percent of participants were comfortable counseling about and 20% were comfortable performing deinfibulation; these percentages were higher among those who had received education or had recently cared for an affected patient. Participants reported insufficient training as the largest barrier to providing care to women. Conclusions: While most physicians in this national cohort had cared for women who had undergone cutting, a minority had any form of education. However, prior education correlated with indicators of improved care. Physicians require additional guidance in treating this important and growing patient population.

Racial and Ethnic Minority Pregnant Patients with Low-Income Experiences of Perinatal Care: A Scoping Review.

Purpose: The maternal mortality ratio for the United States (US) has consistently risen over recent decades. This mortality is especially pronounced within minority populations who experience a maternal mortality and morbidity rate that are much higher than their non-Hispanic white counterparts. Qualitative data are critical in gaining true insight from minority pregnant and postpartum persons. Such data should serve as the basis for building interventions and programs that seek to eradicate perinatal inequities. This review examines the qualitative literature on racial and ethnic minority pregnant patients with low income and their experiences during perinatal care (PNC) to identify recurrent themes that can be addressed through targeted interventions. Methods: PubMed, CINAHL, and Web of Science databases were searched for qualitative studies on racial and ethnic minority pregnant patients with low income and their experiences during PNC. Twenty-two articles were included for analysis. Thematic synthesis was performed to identify categories and recurring themes in each article. Results: Five major categories were identified as consistent experiences of pregnant patients with PNC clinicians: support, education, connection, communication, and trust. Of these, clinician support was the most consistently coded category. Eighteen of the 23 articles discussed tangible support patients had received from their clinicians, such as care coordination and referrals to support services. The second most coded category was education, which was represented in 16 articles. Education was mostly represented negatively as lack of adequate perinatal care education given during the perinatal period. Finally, the categories of connection, communication, and trust were represented by 18, 17, and 17 articles, respectively. Conclusions: These qualitative studies provided specific examples of what racial and ethnic minority pregnant patients with low income deemed positive and negative during the perinatal period and outline ways that these experiences can be improved. Future studies can take the experiences reported in this review to help inform interventions to improve patient experiences and health outcomes that minority persons face in the perinatal period.

Development of a web tool to increase research literacy in underserved populations through public library partnerships.

OBJECTIVE: Inadequate diversity in clinical trials is widely recognized as a significant contributing factor to health disparities experienced by racial/ethnic minorities and other diverse populations in the US. To address this in a scalable way, we sought to develop a web tool that could help enhance underserved minority participation in clinical research. METHODS: We used our research literacy support flashcard tool as the initial prototype for human-centered design and usability testing of the web tool Health for All in public library settings. After forming partnerships with leadership from Chicago Public Libraries (CPL), local medical libraries, and the Chicago Department of Public Health, we conducted seven iterative design sessions with focus groups of library patrons and library staff from six CPL branches serving underserved communities followed by two rounds of usability testing and website modification. RESULTS: Based on the qualitative research findings from Design Sessions 1-7, we enacted the design decision of a website that was a hybrid of fact-filled and vignette (personal stories) paper prototypes divided into 4 modules (trust, diversity, healthy volunteers, pros/cons), each with their own outcome metrics. The website was thus constructed, and navigation issues identified in two rounds of usability testing by library patrons were addressed through further website modification, followed by the launch of a beta version of a hybridized single-scrolling and guided module prototype to allow further development with website analytics. CONCLUSIONS: We report the development of Health for All, a website designed to enhance racial/ethnic minority participation in clinical trials by imparting research literacy, mitigating distrust engendered by longstanding racism and discrimination, and providing connections to clinical trials recruiting participants.

Associations between Fatalistic Cancer Beliefs and Cancer-Screening Behaviors in Chinese American Immigrant Women.

Chinese Americans have among the lowest rates of up-to-date cancer screening in the United States. Fatalistic health beliefs are also common in this population and can lead to decreased healthcare utilization. We sought to understand how these fatalistic beliefs are associated with cancer screening behaviors in this underserved population. A cross-sectional survey was conducted with 732 Chinese women from the greater Chinatown area of Chicago, Illinois. Surveyed questions included sociodemographic information, self-reported healthcare utilization and cancer screening behaviors. The majority of respondents were older than 50, spoke Chinese, had less than a college education, public or no medical insurance, and an annual income < $20,000. Approximately 20% had never received Papanicolaou or mammogram screening. Fatalistic beliefs were common and associated with increased health-seeking behaviors and appropriate Pap and mammogram screening. In this cohort of Chinese American immigrant women in an urban Chinatown community, fatalistic cancer beliefs were prevalent and associated with increased health-seeking and positive cancer screening behaviors. This previously unreported relationship could be leveraged in improving health outcomes of an underserved population.

Systematic Patient Navigation Strategies to Scale Breast Cancer Disparity Reduction by Improved Cancer Prevention and Care Delivery Processes.

PURPOSE: Patient navigation uses trained personnel to eliminate barriers to timely care across all phases of the health care continuum, thereby reducing health disparities. However, patient navigation has yet to be systematized in implementation models to improve processes of care at scale rather than remain a band-aid approach focused solely on improving care for the individual patient. The 4R systems engineering approach (right information and right treatment to the right patient at the right time) uses project management discipline principles to develop care sequence templates that serve as patient-centered project plans guiding patients and their care team. METHODS: A case-study approach focused on the underserved patient shows how facilitators to timely breast cancer screening and care pragmatically identified as emergent data by patient navigators can be actionized by iteratively revising 4R care sequence templates to incorporate new insights as they emerge. RESULTS: Using a case study of breast cancer screening of a low-income patient, we illustrate how 4R care sequence templates can be revised to incorporate emergent facilitators to care identified through patient navigation. CONCLUSION: Use of care sequence templates can inform the care team to optimize a particular patient's care, while functioning as a learning health care system for process improvement of patient care and patient navigation scaling. A learning health care system approach that systematically integrates data patterns emerging from multiple patient navigation experiences through in-person navigators and 4R care sequence templates may improve processes of care and allow patient navigation scaling to reduce cancer disparities.

Refining Trauma-Informed Perinatal Care for Urban Prenatal Care Patients with Multiple Lifetime Traumatic Exposures: A Qualitative Study.

INTRODUCTION: Because lifetime trauma exposure has been linked to multiple adverse pregnancy outcomes, there is a need for all perinatal care providers to be versed in trauma-informed care practices. However, there are few data to guide trauma-informed practice during the perinatal period. The objective of this study was to refine ongoing development of a trauma-informed care framework for perinatal care by conducting a qualitative study of all trauma experiences and preferred screening practices of pregnant patients at an urban prenatal clinic. METHODS: In this qualitative study, we conducted semistructured interviews with 30 women receiving prenatal care at an urban clinic. Participants also completed a trauma history questionnaire. Inductive coding was used to generate themes and subthemes. RESULTS: Participants described multiple lifetime traumatic exposures as well as background exposure to community violence. Not all participants desired routine trauma screening; factors limiting disclosure included fear of retraumatization and belief that prior trauma is unrelated to the current pregnancy. Strong therapeutic relationships were identified as critical to any trauma history discussion. DISCUSSION: This study supports a trauma-informed care approach to caring for pregnant women with prior traumatic exposures, including trauma screening without retraumatization and trusting patient-provider relationships.

Leveraging an Implementation Science Framework to Adapt and Scale a Patient Navigator Intervention to Improve Mammography Screening Outreach in a New Community.

Helping Her Live (HHL) is a community health worker-led outreach model that navigates women from vulnerable communities to mammography screening and diagnostic follow-up. The objective of this study was to evaluate HHL implementation on the southwest side of Chicago. HHL has been implemented on the west side of Chicago since 2008, where it has increased mammogram completion and diagnostic follow-up rates among Black and Hispanic women from resource poor communities. In 2014, HHL was translated to the southwest side of Chicago; implementation success was evaluated by comparing outreach, navigation request, and mammogram completion metrics with the west side. During January 2014-December 2015, outreach was less extensive in the southwest setting (SW) compared to the benchmark west setting (W); however, the proportion of women who completed mammograms in SW was 50%, which compared favorably to the proportion observed in the benchmark setting W (42%). The distribution of insurance status and the racial and ethnic makeup of individuals met on outreach in the W and SW were significantly different (p < 0.0005). This successful expansion of HHL in terms of both geographic and demographic reach justifies further studies leveraging these results and tailoring HHL to additional underserved communities.

Improving Research Literacy in Diverse Minority Populations with a Novel Communication Tool.

Racial/ethnic minorities are underrepresented in clinical research in the USA for multifarious reasons, including barriers to effective communication between researchers and potential research participants. To address the communication barriers between researchers and potential participants, we developed a Research Literacy Support (RLS) tool. The focus of this report is to present findings from the second and third phases of development that refined and assessed usability of the RLS tool. We utilized a mixed-methods approach that entailed iterative cognitive testing with participants (N = 52) from diverse racial/ethnic backgrounds and interviews with clinical research recruiters (N = 20) to modify and refine the design and content of the RLS tool (phase 2). This was followed by assessment of the usability of the RLS tool by 100 participants (phase 3). During phase 2, participants provided feedback about layout, word choice, and comprehension of the tool. In phase 3, participants recognized that they had gained knowledge about clinical research from the RLS tool, although they still had a substantial learning gap after using the tool, indicating an opportunity for further refinement. The RLS tool may help advance health equity by addressing communication barriers that may impede minority participation in clinical research.

The Use of Language in Diabetes Care and Education.

Language is powerful and can have a strong impact on perceptions as well as behavior. A task force, consisting of representatives from the American Association of Diabetes Educators (AADE) and the American Diabetes Association (ADA), convened to discuss language in diabetes care and education. This document represents the expert opinion of the task force. The literature supports the need for a language movement in diabetes care and education. There are effective ways of communicating about diabetes. This article provides recommendations for language used by health care professionals and others when discussing diabetes through spoken or written words-whether directed to people with diabetes, colleagues, or the general public, as well as research questions related to language and diabetes.