Community-Academic Partnerships for Health Research: An Iterative and Transparent Process of Patient Engagement Before the Research Begins.

Background: The root causes of coronavirus disease 2019 (COVID-19) disparities include longstanding systemic racial bias in economic advancement and care delivery, discrimination, lack of access, and social determinants of health. To address these causes, research institutions and health care systems must shift their lens from one that focuses solely on changing behaviors among underserved and vulnerable populations to one that is inward facing. Methods: We worked with a community advisory board and an African American church that has partnered on research for more than a decade to identify community norms, needs, and key resources needed for establishing community-academic partnerships for COVID-19 testing. Participants were purposefully sampled with equal representation from 3 groups: (1) church members and leaders, (2) academic or organization researchers with experience in community-engaged research, and (3) community members with experience participating in community-engaged research. Participants engaged in a hands-on exercise in the church basement as part of a town hall-style meeting. Results: Active discussion led to the identification of business model components salient to COVID-19 testing in an underserved Baltimore community, predominantly made up of African Americans. Our discussion identified key partners, activities, resources, costs, value propositions, community relationships, community groups, communication channels, and outputs for community buy-in. Conclusion: Developing the business case for mutual trustworthiness to be better prepared for future pandemics and public health crises may foster more sustainable community-academic partnerships. Using a Business Model Canvas, we delineate the major components, activities, and value propositions that are needed to achieve authentic community-academic partnerships to advance health equity.

Study protocol for transforming health equity research in integrated primary care: Antiracism as a disruptive innovation.

Among the consequences of systemic racism in health care are significant health disparities among Black/African American individuals with comorbid physical and mental health conditions. Despite decades of studies acknowledging health disparities based on race, significant change has not occurred. There are shockingly few evidence-based antiracism interventions. New paradigms are needed to intervene on, and not just document, racism in health care systems. We are developing a transformative paradigm for new antiracism interventions for primary care settings that integrate mental and physical health care. The paradigm is the first of its kind to integrate community-based participatory research and systems science, within an established model of early phase translation to rigorously define new antiracism interventions. This protocol will use a novel application of systems sciences by combining the qualitative systems sciences methods (group model building; GMB) with quantitative methods (simulation modeling) to develop a comprehensive and community-engaged view of both the drivers of racism and the potential impact of antiracism interventions. Community participants from two integrated primary health care systems will engage in group GMB workshops with researchers to 1) Describe and map the complex dynamic systems driving racism in health care practices, 2) Identify leverage points for disruptive antiracism interventions, policies and practices, and 3) Review and prioritize a list of possible intervention strategies. Advisory committees will provide feedback on the design of GMB procedures, screen potential intervention components for impact, feasibility, and acceptability, and identify gaps for further exploration. Simulation models will be generated based on contextual factors and provider/patient characteristics. Using Item Response Theory, we will initiate the process of developing core measures for assessing the effectiveness of interventions at the organizational-systems and provider levels to be tested under a variety of conditions. While we focus on Black/African Americans, we hope that the resulting transformative paradigm can be applied to improve health equity among other marginalized groups.

Research in the USA on COVID-19's long-term effects: measures needed to ensure black, indigenous and Latinx communities are not left behind.

The SARS-CoV-2 (COVID-19) pandemic continues to expose underlying inequities in healthcare for black, indigenous and Latinx communities in the USA. The gaps in equitable care for communities of colour transcend the diagnosis, treatment and vaccinations related to COVID-19. We are experiencing a continued gap across racial and socioeconomic lines for those who suffer prolonged effects of COVID-19, also known as 'Long COVID-19'. What we know about the treatment for Long COVID-19 so far is that it is complex, requires a multidisciplinary approach and there is still much research needed to fully understand the effects. In this paper, we discuss pragmatic considerations for including affected communities, relevant stakeholders, and leaders from communities of colour in the planning and implementation of Long COVID-19 research.

Pragmatic patient engagement in designing pragmatic oncology clinical trials.

Oncology trials are the cornerstone of effective and safe therapeutic discoveries. However, there is increasing demand for pragmatism and patient engagement in the design, implementation and dissemination of oncology trials. Many researchers are uncertain about making trials more practical and even less knowledgeable about how to meaningfully engage patients without compromising scientific rigor to meet regulatory requirements. The present work provides practical guidance for addressing both pragmaticism and meaningful patient engagement. Applying evidence-based approaches like PRECIS-2-tool and the 10-Step Engagement Framework offer practical guidance to make future trials in oncology truly pragmatic and patient-centered. Consequently, such patient-centered trials have improved participation, faster recruitment and greater retention, and uptake of innovative technologies in community-based care.

Lessons Learned from the Medical University of South Carolina Transdisciplinary Collaborative Center (TCC) in Precision Medicine and Minority Men's Health.

The Transdisciplinary Collaborative Center (TCC) in Precision Medicine for Minority Men's Health was established at the Medical University of South Carolina (MUSC) in 2015 to address disparities in the translation of precision medicine approaches among racial minority groups. This regional consortium focuses on three primary areas: (1) the development of a consortium of regional and national partners, (2) conducting transdisciplinary research examining synergistic effects of biological, social, physiological, and clinical determinants of chronic disease risks and outcomes, and (3) dissemination and implementation of precision medicine approaches, with an emphasis on reducing disparities in health care and outcomes among minority men. Given consistent calls to better translate precision medicine approaches and the focus of this consortium on addressing disparities among minority men, we provide an overview of our experience in developing the MUSC TCC, including barriers and facilitators to conducting translational research on minority men's health issues in the context of precision medicine. Lessons learned and areas for improvement include providing enough time to create consistent partnerships and community engagement to improve recruitment and retention, identifying unique ways to engage diverse partners from across the region and nation, and better approaches to dissemination and communication for large partnerships focusing on precision medicine.

The Family Value of Information, Community Support, and Experience Study: Rationale, Design, and Methods of a "Family-Centered" Research Study.

The Patient Protection and Affordable Care Act focuses on improving consumer engagement and patient-centered care. This article describes the design and rationale of a study targeting family engagement in pediatric mental health services. The study is a 90-day randomized trial of a telephone-delivered Family Navigator services versus usual care for parents of Medicaid-insured youth younger than 13 years with serious mental illness. Youth are identified through a pediatric antipsychotic medication preauthorization program. Family Navigators offer peer support to empower and engage parents in their child's recovery. Outcomes include parent report of empowerment, social support, satisfaction with child mental health services, and child functioning as well as claims-based measures of psychotherapy service utilization and antipsychotic medication dosage. The focus on "family-centered" care in this study is strongly supported by the active role of consumers in study design and implementation.

Using community-based participatory research in patient-centered outcomes research to address health disparities in under-represented communities.

The emergence of patient-centered outcomes research (PCOR) has created a paradigm shift in the way health outcomes research is designed, conducted and disseminated. While PCOR expands the potential for patients to play a key advisory role in every aspect of the research process, community-based participatory research (CBPR) has long provided this opportunity for engaging communities in research. CBPR is an excellent tool for achieving PCOR goals of improving the health of all people by providing them with evidence-based information for making informed healthcare decisions. We propose ways by which PCOR can effectively use CBPR principles to engage patients in general, and specifically patients from underserved communities. The hope is that this will help to reduce and eventually eliminate health disparities.

A Legacy of Science and Community Engagement via the Community Networks Program.

This special issue documents the progress of a unique group of research investigations that further legitimize the engagement of affected communities in quality cancer health disparities research and, the importance of mentoring and training of new and diverse health disparity researchers. The implications for the reduction and elimination of cancer health disparities within the United States are apparent. The diversity of populations included in these novel studies also has implications for addressing inequities in a global context.

The National Cancer Institute's Community Networks Program Initiative to Reduce Cancer Health Disparities: Outcomes and Lessons Learned.

BACKGROUND: We describe reach, partnerships, products, benefits, and lessons learned of the 25 Community Network Programs (CNPs) that applied community-based participatory research (CBPR) to reduce cancer health disparities. METHODS: Quantitative and qualitative data were abstracted from CNP final reports. Qualitative data were grouped by theme. RESULTS: Together, the 25 CNPs worked with more than 2,000 academic, clinical, community, government, faith-based, and other partners. They completed 211 needs assessments, leveraged funds for 328 research and service projects, trained 719 new investigators, educated almost 55,000 community members, and published 991 articles. Qualitative data illustrated how use of CBPR improved research methods and participation; improved knowledge, interventions, and outcomes; and built community capacity. Lessons learned related to the need for time to nurture partnerships and the need to attend to community demand for sustained improvements in cancer services. IMPLICATIONS: Findings demonstrate the value of government-supported, community-academic, CBPR partnerships in cancer prevention and control research.

The Affordable Care Act and genetic testing for inheritable cancer syndromes: impact on high-risk underserved minorities.

Genetic testing for inheritable cancer syndromes is becoming a critical part of preventive health services. The Patient Protection and Affordable Care Act (PPACA) Essential Health Benefits package addresses breast cancer susceptibility-gene testing for women who are unaffected by cancer. The absence of provisions for 1) men, 2) cancer patients, 3) other inheritable cancer syndromes, and 4) risk-reducing interventions are limitations of PPACA. We discuss provisions and limitations of PPACA pertaining to genetic testing and effects on high-risk populations, in particular minorities. The PPACA is the beginning of an ongoing process of incorporating genetic testing in the armamentarium of cancer prevention. Future efforts should focus on ensuring equitable access to genetic testing as a preventive service under PPACA to high-risk populations other than women. Consideration should also be given to provisions for risk-reducing interventions, especially in underserved minority populations, who are known to underutilize genetic testing and may have limited financial resources for medical intervention.

Rural community-academic partnership model for community engagement and partnered research.

BACKGROUND: A rural community-academic partnership was developed in 1997 between the Eastern Shore Area Health Education Center (ESAHEC) and the University of Maryland School of Medicine's (UMSOM) Office of Policy and Planning (OPP). The model supports partnered research, bidirectional interactions, and community and health professional education. OBJECTIVES: The primary aim was to develop a sustainable community-academic partnership that addressed health and social issues on the rural Eastern Shore. LESSONS LEARNED: Mutual respect and trust led to sustained, bidirectional interactions and communication. Community and academic partner empowerment were supported by shared grant funds. Continual refinement of the partnership and programs occurred in response to community input and qualitative and quantitative research. RESULTS: The partnership led to community empowerment, increased willingness to participate in clinical trials and biospecimen donation, leveraged grant funds, partnered research, and policies to support health and social interventions. CONCLUSIONS: This partnership model has significant benefits and demonstrates its relevance for addressing complex rural health issues. Innovative aspects of the model include shared university grants, community inclusion on research protocols, bidirectional research planning and research ethics training of partners and communities. The model is replicable in other rural areas of the United States.

A model for bidirectional community-academic engagement (CAE): overview of partnered research, capacity enhancement, systems transformation, and public trust in research.

The University of Maryland's Office of Policy and Planning in collaboration with urban and rural community partners, planned and implemented a model for community-academic engagement (CAE) in partnered research and programs. The model addressed health disparities, cancer and tobacco-related diseases, and public trust in research. Environments have flourished that resulted in bidirectional community-academic interactions, and led to transformation of the academic environment and community capacity to identify and address health issues. This collaborative model produced: •    enhanced public trust in research; and •    enhanced community and Academic Health Center (AHC) capacity to address community health needs as partners. A unique feature of this model is AHC's shared grant funding with community partners serving diverse and medically underserved communities for predetermined roles in research, policy and educational programs. Over $18 million in grant funding was provided to community organizations. This paper presents an overview of this model as a case study.

University of Maryland School of Medicine increases medical student education in primary care.

In August 2012 the University of Maryland School of Medicine will start a new Primary Care Track for incoming first year medical students as a collaborative program of the departments of Family and Community Medicine, Internal Medicine, and Pediatrics. Its focus will be to introduce all students to primary care role models early in medical school, and to offer a longitudinal experience in primary care in rural and urban underserved communities to interested students, with the intention of increasing the number of UMD medical students who choose primary care careers in these communities.

The potential impact of comparative effectiveness research on the health of minority populations.

Minorities suffer more frequently and more severely from many diseases than do non-Hispanic whites, and they often receive lower-quality care, which leads to poorer health outcomes. Given the diversity of the US population, comparative effectiveness research should capture the health outcomes of racial and ethnic minority groups and investigate whether disparities reflect variations in care or different responses to treatment. We recommend a number of measures to ensure that this research addresses the needs of minorities, including greater attention to subgroup analysis. We also recommend the increased recruitment of minorities for clinical trials, and such measures as using community health workers to translate research results in ways that will increase their relevance to minority patients.

Prostaglandin E receptor EP1 suppresses breast cancer metastasis and is linked to survival differences and cancer disparities.

Cyclooxygenase-2 is frequently overexpressed and associated with poor prognosis in breast cancer. The cyclooxygenase-2 product prostaglandin E(2) elicits cellular responses through four G-protein-coupled receptors, designated EP1 to EP4, coupled to distinct intracellular signaling pathways. EP4, expressed on malignant breast cells, promotes metastasis; however, a role for EP1 in metastasis has not been investigated. Using a murine model of metastatic breast cancer, we now show that pharmacologic antagonism of EP1 with SC19220 or AH6809 promoted lung colonization of mammary tumor cells by 3.7- to 5.4-fold. Likewise, reducing EP1 gene expression by shRNA also increased metastatic capacity relative to cells transfected with nonsilencing vector but did not affect the size of transplanted tumors. Examination of invasive ductal carcinomas by immunohistochemistry shows that EP1 was detected in both the cytoplasm and nucleus of benign ducts as well as malignant cells in some samples, but was absent or limited to either the nucleus or cytoplasm in other malignant samples. Overall survival for women with tumors that were negative for nuclear EP1 was significantly worse than for women with EP1 expression (P = 0.008). There was no difference in survival for women with differences in cytoplasmic EP1 expression (P = 0.46). Comparing EP1 mRNA in breast tumors from African American and European American women revealed that many more African American breast tumors lacked detectable EP1 mRNA (P = 0.04). These studies support the hypothesis that EP1 functions as a metastasis suppressor and that loss of nuclear EP1 is associated with poorer overall survival and may contribute to disparities in outcome in different populations.