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.

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.

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.

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.

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.

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.

Identification of an inactivating cysteine switch in protein kinase Cepsilon, a rational target for the design of protein kinase Cepsilon-inhibitory cancer therapeutics.

Critical roles played by some protein kinases in neoplastic transformation and progression provide a rationale for developing selective, small-molecule kinase inhibitors as antineoplastic drugs. Protein kinase Cepsilon (PKCepsilon) is a rational target for cancer therapy, because it is oncogenic and prometastatic in transgenic mouse models. PKCepsilon is activated by sn-1,2-diacylglycerol (DAG). Attempts to develop selective PKCepsilon inhibitors that block activation by DAG or compete with ATP have not yet met with success, suggesting a need for new strategies. We previously reported that cystamine and a metabolic cystine precursor inactivate PKCepsilon in cells in a thiol-reversible manner. In this report, we first determined that PKCepsilon became resistant to inactivation by disulfides when Cys452 was replaced with alanine by site-specific mutagenesis of human PKCepsilon or a constitutively active PKCepsilon mutant. These results showed that the disulfides inactivated PKCepsilon by thiol-disulfide exchange, either upon Cys452 S-thiolation or by rearrangement to an intra-protein disulfide. Mass spectrometric analysis of peptide digests of cystamine-inactivated, carbamidomethylated PKCepsilon detected a peptide S-cysteaminylated at Cys452, indicating that Cys452 S-cysteaminylation is a stable modification. Furthermore, PKCepsilon inactivation by N-ethylmaleimide was Cys452 dependent, providing corroborative evidence that PKCepsilon inhibitors can be designed by targeting Cys452 with small molecules that stably modify the residue. Cys452 is an active site residue that is conserved in only 11 human protein kinase genes. Therefore, the PKCepsilon-inactivating Cys452 switch is a rational target for the design of antineoplastic drugs that selectively inhibit PKCepsilon.

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 and the American Diabetes Association, convened to discuss language in diabetes care and education. 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.

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.

Protein kinase C-{alpha} mediates epidermal growth factor receptor transactivation in human prostate cancer cells.

Progression of human prostate cancer to a malignancy that is refractory to androgen-ablation therapy renders the disease resistant to available treatment options and accounts for the high prostate cancer mortality rate. Epidermal growth factor receptor (EGFR) expression in human prostate cancer specimens increases with disease progression to androgen-refractory prostate cancer, and experimental models implicate EGFR-dependent signaling to Erk1/2 activation in the androgen-refractory prostate cancer phenotype. 12-O-Tetradecanoylphorbol-13-acetate (TPA)-induced Erk1/2 activation in human prostate cancer PC-3 cells is a paradigm of diacylglycerol-induced EGFR transactivation in androgen-independent prostate cancer. In this report, we establish an obligatory role for TPA-induced protein kinase C (PKC)-alpha activation in EGFR transactivation and signaling to Erk1/2 activation in PC-3 cells. TPA-regulated molecules include PKCs, PKDs, and Ras guanyl nucleotide-releasing proteins. The PKC-selective inhibitors GF109203X and Go6983 each blocked TPA-induced EGFR transactivation, indicating a requirement for PKC. PC-3 cells express four PKC isozymes. Prolonged bryostatin 1 treatment abrogated PKCalpha expression without altering expression levels of the other PKC isozymes. Pharmacologic PKCalpha "knockdown" abrogated TPA-induced Erk1/2 activation without affecting the EGF/EGFR-induced response, indicating that PKCalpha was required for EGFR transactivation but dispensable for signaling of ligand-activated EGFR to Erk1/2 activation. We corroborated this by showing that Go6976, which is a PKCalpha-selective inhibitor in PC-3 cells, likewise abolished TPA-induced Erk1/2 activation and did not inhibit EGF/EGFR-induced Erk1/2 activation. Go6976 had similar effects in DU145 cells, providing evidence for a common PKCalpha-dependent Erk1/2 activation mechanism in androgen-independent human prostate cancer cells of distinct genetic origin. These results constitute a rational basis for selective PKCalpha inhibition as a modality of prostate cancer therapy.

Achievement of Weight Loss and Other Requirements of the Diabetes Prevention and Recognition Program: A National Diabetes Prevention Program Network Based on Nationally Certified Diabetes Self-management Education Programs.

PURPOSE: The purpose of this report is (1) to describe the use of the American Association of Diabetes Educators' (AADE's) model of implementation of the National Diabetes Prevention Program through nationally certified diabetes self-management education (DSME) programs and (2) to report the aggregated program outcomes as defined by the Diabetes Prevention and Recognition Program standards of the Centers for Disease Control and Prevention (CDC). METHODS: In 2012, the AADE worked with the CDC to select 30 certified DSME programs for National Diabetes Prevention Program delivery. For the following 3 years, the AADE continued to work with 25 of the 30 original programs. Results for all CDC recognition standards have been collected from these 25 programs and analyzed as aggregated data over the course of 36 months. RESULTS: At the end of the full-year program, average percentage body weight loss for participants across all 25 programs exceeded the CDC's minimum requirement of 5% weight loss. All programs on average met the CDC requirements for program attendance. CONCLUSION: Increasing access to the National Diabetes Prevention Program, through an array of networks, including certified DSME programs, will better ensure that people are able to engage in an effective approach to reducing their risk of diabetes.

PKC sulfhydryl targeting by disulfiram produces divergent isozymic regulatory responses that accord with the cancer preventive activity of the thiuram disulfide.

The protein kinase C (PKC) isozyme family plays key roles in cell growth regulation and influences neoplastic disease development and progression. For example, PKCepsilon is oncogenic, and PKCdelta tumor-suppressive. PKC isozymes are characterized by distinct activation mechanisms entailing phosphatidylserine-dependent cofactor binding to the regulatory domain. Evidence is now emerging that redox signaling offers another platform of PKC regulation. We have established that PKC isozymes are regulated by S-thiolation, a posttranslational modification entailing disulfide linkage of low-molecular-weight species to select protein sulfhydryls. Our recent studies demonstrate that physiologically occurring disulfides with cysteinyl constituents, e.g., cystine, regulate cellular PKC isozymes by S-thiolation-triggered mechanisms. This report shows that PKC isozymes are also molecular targets of a chemically distinct class of disulfides. Disulfiram is a thiuram disulfide with potent cancer preventive activity in in vivo models of chemical carcinogenesis. Our results indicate that PKC Sthiolation by disulfiram induces differential regulatory effects on PKC isozymes that correlate with the cancer preventive activity of the drug. The implication of these findings is that PKC-regulatory effects of thiuram disulfides may offer a useful pharmacological guide for development of disulfiram analogues with superior cancer preventive activity.