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Black communities in the United States experience disproportionate rates of adverse health. In this chapter, we discuss the importance of culturally sensitive, empowerment-focused health promotion programs in Black communities anchored in the community-based participatory research (CBPR) approach and/or the patient-centered culturally sensitive health care (PC-CSHC) model. One program is the Health-Smart Holistic Health Program for Black Seniors, which is an ongoing, multiyear program designed to promote physical activity and health eating and reduce social isolation, food insecurity, and financial insecurity among older Black adults in low-income communities. The second program is the Health-Smart for Weight Loss Program, which is a cluster randomized controlled trial targeting Black women with obesity that tested (a) the impact of evidence-based, patient-empowerment-focused weight loss program and (b) the comparative effectiveness of a patient-centered culturally sensitive weight loss maintenance program versus a standard behavioral weight loss maintenance program. The results support use of patient-centered, culturally sensitive, and community-based participatory approaches to improve health outcomes in Black communities.
Community-Engaged Research (CEnR) and Community-Based Participatory Research (CBPR) require validated measures and metrics for evaluating research partnerships and outcomes. There is a need to adapt and translate existing measures for practical use with diverse and non-English-speaking communities. This paper describes the Spanish translation and adaptation of Engage for Equity’s Community Engagement Survey (E2 CES), a nationally validated and empirically-supported CEnR evaluation tool, into the full-length “Encuesta Comunitaria,” and a pragmatic shorter version “Fortaleciendo y Uniendo EsfueRzos Transdisciplinarios para Equidad de Salud” (FUERTES).
Methods:
Community and academic partners from the mainland US, Puerto Rico, and Nicaragua participated in translating and adapting E2 CES, preserving content validity, psychometric properties, and importance to stakeholders of items, scales, and CBPR constructs (contexts, partnership processes, intervention and research actions, and outcomes). Internal consistency was assessed using Cronbach’s alpha and convergent validity was assessed via a correlation matrix among scales.
Results:
Encuesta Comunitaria respondents (N = 57) self-identified as primarily Latinos/as/x (97%), female (74%), and academics (61%). Cronbach’s alpha values ranged from 0.72 to 0.88 for items in the context domain to 0.90–0.92 for items in the intervention/research domain. Correlations were found as expected among subscales, with the strongest relationships found for subscales within the same CBPR domain. Results informed the creation of FUERTES.
Conclusions:
Encuenta Comunitaria and FUERTES offer CEnR/CBPR practitioners two validated instruments for assessing their research partnering practices, and outcomes. Moreover, FUERTES meets the need for shorter pragmatic tools. These measures can further strengthen CEnR/CBPR involving Latino/a/x communities within the US, Latin America, and globally.
The DOHaD field provides critical evidence for investment in early life, linking environmental exposures during preconception, pregnancy, and infancy with later non-communicable disease risk. Despite the potential of this evidence to positively impact some of our most vulnerable communities, instances where communities are engaged in participatory DOHaD research and knowledge translation processes are limited. This chapter explores the benefits of community-based participatory research approaches and outlines current examples within the DOHaD field. In particular, it focuses on ongoing work within the Cook Islands where DOHaD has informed community-partnered research, scientific and health literacy programmes in schools, and the development of early-life nutrition resources for mothers and families.
Community-engaged research (CEnR) has moved from the fringes to the mainstream of academic research, particularly that which orients to goals of social, racial, and health equity. The construct of empowerment, which encompasses interconnected processes at the level of the individual, the organization, and the community, can be used to understand the mechanisms by which CEnR may contribute to improvements in equity and justice. This chapter introduces and describes a conceptual model for empowerment in CEnR that synthesizes ideas and empirical advances from community psychology and public health. We use the model to examine the processes by which social power can be built and exercised through CEnR at multiple levels of analysis, suggesting that the power that comes from community-led and grassroots community organizing processes has the greatest significance for equity-based CEnR and ultimately for goals of equity- and justice-focused social change.
The survey investigates COVID-19 information source trust levels and Vietnamese Americans’ willingness to participate in clinical trials. An analysis of 212 completed surveys revealed that trust in coronavirus disease 2019 (COVID-19) clinical trial information from university hospitals and drug companies was associated with willingness to participate in clinical trials. Trust in COVID-19 information from federal governments and state governments was also associated with willingness to participate in clinical trials. However, trust in local health facilities was linked to trial participation reluctance. The results suggest that Vietnamese Americans’ participation in clinical trials can be increased by identifying and using trusted sources of information.
There is a growing recognition of the benefits of collaborating with people with lived experience (PWLE) of mental health conditions in mental health research and implementation of services. Such collaboration has been effective in reducing mental health stigma and improving the quality of mental health care. Here, we describe using PhotoVoice as a collaborative method in which PWLE use visual narratives to tell their recovery stories for promoting social contact, debunking myths and reducing stigma. First, we outline the framework of this collaboration, drawing on theories from medical anthropology and social psychology and focusing on reducing mental health stigma among primary healthcare workers. Then, we describe the process using our learnings from implementing PhotoVoice in Nepal, Ethiopia and Uganda. We highlight collaboration in five key steps with associated considerations: (1) identifying PWLE for collaboration; (2) training in photography, distress management and presentation skills; (3) developing a photographic recovery story; (4) training healthcare workers using the PhotoVoice narratives; and (5) ongoing support of mental health systems strengthening in collaboration with PWLE. Then, we critically reflect on the process, highlighting the benefits and challenges to the participants and researchers, thereby paving the way for expanding collaborations with PWLE using the PhotoVoice method.
Collaborating on a scientific endeavor can take extra time, work, and intention to ensure that the collaboration is fruitful. However, it also comes with many benefits, such as the building of professional relationships. There are several best practices that can help increase the likelihood that a collaboration will be successful. These include taking time at the beginning of the collaboration to plan how the team will work together. Teams that are characterized by trust, open communication, and shared goals and expectations, among other qualities, are more likely to be successful. Different forms of interdisciplinary research move researchers from a focus on one’s own discipline to increasing integration across other disciplines. Despite the challenges that come with interdisciplinary research, such as navigating differences in discipline-specific practices, such a collaboration can provide the capacity to address scientific problems that are too big for one discipline.
In 2017, the Michigan Institute for Clinical and Health Research (MICHR) and community partners in Flint, Michigan collaborated to launch a research funding program and evaluate the dynamics of those research partnerships receiving funding. While validated assessments for community-engaged research (CEnR) partnerships were available, the study team found none sufficiently relevant to conducting CEnR in the context of the work. MICHR faculty and staff along with community partners living and working in Flint used a community-based participatory research (CBPR) approach to develop and administer a locally relevant assessment of CEnR partnerships that were active in Flint in 2019 and 2021.
Methods:
Surveys were administered each year to over a dozen partnerships funded by MICHR to evaluate how community and academic partners assessed the dynamics and impact of their study teams over time.
Results:
The results suggest that partners believed that their partnerships were engaging and highly impactful. Although many substantive differences between community and academic partners’ perceptions over time were identified, the most notable regarded the financial management of the partnerships.
Conclusion:
This work contributes to the field of translational science by evaluating how the financial management of community-engaged health research partnerships in a locally relevant context of Flint can be associated with these teams’ scientific productivity and impact with national implications for CEnR. This work presents evaluation methods which can be used by clinical and translational research centers that strive to implement and measure their use of CBPR approaches.
Archaeologists have an obligation to conduct research that is relevant and responsive to the desires, interests, values, and concerns of Indigenous descendant communities. Current best practices for collaborative, community-based archaeologies emphasize long-term engagement and “full collaboration,” including the coproduction of knowledge and total stakeholder involvement. The present-day structures and demands of archaeology—especially in CRM and graduate student research contexts—can serve to make such fully collaborative work difficult, if not impossible. Oftentimes, these difficulties result in a complete abdication of collaboration or even consultation beyond the bare minimum required by law. However, professional archaeologists must strive in all instances to work alongside Native communities in respectful, responsive, and mutually beneficial ways even if this work may often fall short of the loftiest ideal. In this article, the authors present two case studies in collaboration from recent projects conducted in the North American midcontinent. These case studies clearly demonstrate how tribal fieldwork monitoring, working with tribal institutional review boards (IRBs), and other related forms of “imperfect” collaboration can still help move us toward a more ethical, inclusive, and respectful future archaeology.
Academic and community investigators conducting community-engaged research (CEnR) are often met with challenges when seeking Institutional Review Board (IRB) approval. This scoping review aims to identify challenges and recommendations for CEnR investigators and community partners working with IRBs. Peer-reviewed articles that reported on CEnR, specified study-related challenges, and lessons learned for working with IRBs and conducted in the United States were included for review. Fifteen studies met the criteria and were extracted for this review. Four challenges identified (1) Community partners not being recognized as research partners (2) Cultural competence, language of consent forms, and literacy level of partners; (3) IRBs apply formulaic approaches to CEnR; & (4) Extensive delays in IRB preparation and approval potentially stifle the relationships with community partners. Recommendations included (1) Training IRBs to understand CEnR principles to streamline and increase the flexibility of the IRB review process; (2) Identifying influential community stakeholders who can provide support for the study; and (3) Disseminating human subjects research training that is accessible to all community investigator to satisfy IRB concerns. Findings from our study suggest that IRBs can benefit from more training in CEnR requirements and methodologies
The effectiveness of community-based participatory research (CBPR) partnerships to address health inequities is well documented. CBPR integrates knowledge and perspectives of diverse communities throughout the research process, following principles that emphasize trust, power sharing, co-learning, and mutual benefits. However, institutions and funders seldom provide the time and resources needed for the critical stage of equitable partnership formation and development.
Methods:
Since 2011, the Detroit Urban Research Center, collaborating with other entities, has promoted the development of new community–academic research partnerships through two grant programs that combine seed funding with capacity building support from community and academic instructors/mentors experienced in CBPR. Process and outcomes were evaluated using mixed methods.
Results:
From 2011 to 2021, 50 partnerships received grants ranging from $2,500 to $30,000, totaling $605,000. Outcomes included equitable partnership infrastructure and processes, innovative pilot research, translation of findings to interventions and policy change, dissemination to multiple audiences, new proposals and projects, and sustained community–academic research partnerships. All partnerships continued beyond the program; over half secured additional funding.
Conclusions:
Keys to success included participation as community–academic teams, dedicated time for partnership/relationship development, workshops to develop equity-based skills, relationships, and projects, expert community–academic instructor guidance, and connection to additional resources. Findings demonstrate that small amounts of seed funding for newly forming community–academic partnerships, paired with capacity building support, can provide essential time and resources needed to develop diverse, inclusive, equity-focused CBPR partnerships. Building such support into funding initiatives and through academic institutions can enhance impact and sustainability of translational research toward advancing health equity.
The COVID-19 pandemic presented a challenge to established seed grant funding mechanisms aimed at fostering collaboration in child health research between investigators at the University of Minnesota (UMN) and Children’s Hospitals and Clinics of Minnesota (Children’s MN). We created a “rapid response,” small grant program to catalyze collaborations in child health COVID-19 research. In this paper, we describe the projects funded by this mechanism and metrics of their success.
Methods:
Using seed funds from the UMN Clinical and Translational Science Institute, the UMN Medical School Department of Pediatrics, and the Children’s Minnesota Research Institute, a rapid response request for applications (RFAs) was issued based on the stipulations that the proposal had to: 1) consist of a clear, synergistic partnership between co-PIs from the academic and community settings; and 2) that the proposal addressed an area of knowledge deficit relevant to child health engendered by the COVID-19 pandemic.
Results:
Grant applications submitted in response to this RFA segregated into three categories: family fragility and disruption exacerbated by COVID-19; knowledge gaps about COVID-19 disease in children; and optimizing pediatric care in the setting of COVID-19 pandemic restrictions. A series of virtual workshops presented research results to the pediatric community. Several manuscripts and extramural funding awards underscored the success of the program.
Conclusions:
A “rapid response” seed funding mechanism enabled nascent academic-community research partnerships during the COVID-19 pandemic. In the context of the rapidly evolving landscape of COVID-19, flexible seed grant programs can be useful in addressing unmet needs in pediatric health.
Community-based participatory research (CBPR) is an approach that empowers marginalized groups to become partners in research. However, CBPR can be challenging to implement and has been underutilized in research on substance use disorder (SUD). The goal of this chapter is to provide practical knowledge and resources for individuals who wish to implement CBPR projects related to the stigma of SUD. In this chapter, we define CBPR, apply principles of CBPR to a case example, and suggest ways that community members can be directly involved in research on SUD stigma. We consider how CBPR might address gaps in research on the stigma of SUD and provide guidelines to engaging stakeholders in CBPR. Drawing from the literature on other health stigmatized health conditions, we present issues to consider during implementation of CBPR projects and models that can guide CBPR work.
Using an adaption of the Photovoice method, this study explored how food insecurity affected parents’ ability to provide food for their family, their strategies for managing household food insecurity and the impact of food insecurity on their well-being.
Design:
Parents submitted photos around their families’ experiences with food insecurity. Afterwards, they completed in-depth, semi-structured interviews about their photos. The interviews were transcribed and analysed for thematic content using the constant comparative method.
Setting:
San Francisco Bay Area, California, USA.
Participants:
Seventeen parents (fourteen mothers and three fathers) were recruited from a broader qualitative study on understanding the experiences of food insecurity in low-income families.
Results:
Four themes were identified from the parents’ photos and interviews. First, parents described multiple aspects of their food environment that promoted unhealthy eating behaviours. Second, parents shared strategies they employed to acquire food with limited resources. Third, parents expressed feelings of shame, guilt and distress resulting from their experience of food insecurity. And finally, parents described treating their children to special foods to cultivate a sense of normalcy.
Conclusions:
Parents highlighted the external contributors and internal struggles of their experiences of food insecurity. Additional research to understand the experiences of the food-insecure families may help to improve nutrition interventions targeting this structurally vulnerable population.
The Rockefeller University Center for Clinical and Translational Science (RU-CCTS) and Clinical Directors Network (CDN), a Practice-Based Research Network (PBRN), fostered a community–academic research partnership involving Community Health Center (CHCs) clinicians, laboratory scientists, clinical researchers, community, and patient partners. From 2011 to 2018, the partnership designed and completed Community-Associated Methicillin-Resistant Staphylococcus Aureus Project (CAMP1), an observational study funded by the National Center for Advancing Translational Sciences (NCATS), and CAMP2, a Comparative Effectiveness Research Study funded by the Patient-Centered Outcomes Research Institute (PCORI). We conducted a social network analysis (SNA) to characterize this Community-Engaged Research (CEnR) partnership.
Methods:
Projects incorporated principles of Community-Based Participatory Research (CAMP1/2) and PCORI engagement rubrics (CAMP2). Meetings were designed to be highly interactive, facilitate co-learning, share governance, and incentivize ongoing engagement. Meeting attendance formed the raw dataset enriched by stakeholder roles and affiliations. We used SNA software (Gephi) to form networks for four project periods, characterize network attributes (density, degree, centrality, vulnerability), and create sociograms. Polynomial regression models were used to study stakeholder interactions.
Results:
Forty-seven progress meetings engaged 141 stakeholders, fulfilling 7 roles, and affiliated with 28 organizations (6 types). Network size, density, and interactions across organizations increased over time. Interactions between Community Members or Recruiters/Community Health Workers and almost every other role increased significantly across CAMP2 (P < 0.005); Community Members’ centrality to the network increased over time.
Conclusions:
In a partnership with a highly interactive meeting model, SNA using operational attendance data afforded a view of stakeholder interactions that realized the engagement goals of the partnership.
Evidence is limited on how to synthesize and incorporate the views of stakeholders into a multisite pragmatic trial and how much academic teams change study design and protocol in response to stakeholder input. This qualitative study describes how stakeholders contributed to the design, conduct, and dissemination of findings of a multisite pragmatic clinical trial, the COMprehensive Post-Acute Stroke Services (COMPASS) Study. We engaged stakeholders as integral research partners by embedding them in study committees and community resource networks that supported local sites. Data stemmed from formal focus groups and continuous participation in working groups. Guided by Grounded Theory, we extracted themes from focus group and meeting notes. These were discussed as a team and with other stakeholder groups for feasibility. A consensus approach was used. Stakeholder input changed many aspects of the study including: the care model that treated stroke as a chronic condition after hospital discharge, training for hospital-based providers who often lacked awareness of the barriers to recovery that patients face, support for caregivers who were essential for stroke patients’ recovery, and for community-based health and social service providers whose services can support recovery yet often go underutilized. Stakeholders brought value to both pragmatic research and health service delivery. Future studies should test the impact of elements of study implementation informed by stakeholders vs those that are not.
Shared decision-making (SDM) is a critical component of delivering patient-centered care. Members of vulnerable populations may play a passive role in clinical decision-making; therefore, understanding their prior decision-making experiences is a key step to engaging them in SDM.
Objective:
To understand the previous healthcare experiences and current expectations of vulnerable populations on clinical decision-making regarding therapeutic options.
Methods:
Clients of a local food bank were recruited to participate in focus groups. Participants were asked to share prior health decision experiences, explain difficulties they faced when making a therapeutic decision, describe features of previous satisfactory decision-making processes, share factors under consideration when choosing between treatment options, and suggest tools that would help them to communicate with healthcare providers. We used the inductive content analysis to interpret data gathered from the focus groups.
Results:
Twenty-six food bank clients participated in four focus groups. All participants lived in areas of socioeconomic disadvantage. Four themes emerged: prior negative clinical decision-making experience with providers, patients preparing to engage in SDM, challenges encountered during the decision-making process, and patients’ expectations of decision aids. Participants also reported they were unable to discuss therapeutic options at the time of decision-making. They also expressed financial concerns and the need for sufficiently detailed information to evaluate risks.
Conclusion:
Our findings suggest the necessity of developing decision aids that would improve the engagement of vulnerable populations in the SDM process, including consideration of affordability, use of patient-friendly language, and incorporation of drug–drug and drug–food interactions information.
Worldwide, early intervention services for young people with recent-onset psychosis have been associated with improvements in outcomes, including reductions in hospitalization, symptoms, and improvements in treatment engagement and work/school participation. States have received federal mental health block grant funding to implement team-based, multi-element, evidence-based early intervention services, now called coordinated specialty care (CSC) in the USA. New York State’s CSC program, OnTrackNY, has grown into a 23-site, statewide network, serving over 1800 individuals since its 2013 inception. A state-supported intermediary organization, OnTrackCentral, has overseen the growth of OnTrackNY. OnTrackNY has been committed to quality improvement since its inception. In 2019, OnTrackNY was awarded a regional hub within the National Institute of Mental Health-sponsored Early Psychosis Intervention Network (EPINET). The participation in the national EPINET initiative reframes and expands OnTrackNY’s quality improvement activities. The national EPINET initiative aims to develop a learning healthcare system (LHS); OnTrackNY’s participation will facilitate the development of infrastructure, including a systematic approach to facilitating stakeholder input and enhancing the data and informatics infrastructure to promote quality improvement. Additionally, this infrastructure will support practice-based research to improve care. The investment of the EPINET network to build regional and national LHSs will accelerate innovations to improve quality of care.
Research Electronic Data Capture (REDCap) is a secure, web-based electronic data capture application for building and managing surveys and databases. It can also be used for study management, data transfer, and data export into a variety of statistical programs. REDcap was developed and supported by the National Center for Advancing Translational Sciences Program and is used in over 3700 institutions worldwide. It can also be used to track and measure stakeholder engagement, an integral element of research funded by the Patient-Centered Outcomes Research Institute (PCORI). Continuously and accurately tracking and reporting on stakeholder engagement activities throughout the life of a PCORI-funded trial can be challenging, particularly in complex trials with multiple types of engagement.
Methods:
In this paper, we show our approach for collecting and capturing stakeholder engagement activities using a shareable REDCap tool in one of the PCORI’s first large pragmatic clinical trials (the Comprehensive Post-Acute Stroke Services) to inform other investigators planning cluster-randomized pragmatic trials. Benefits and challenges are highlighted for researchers seeking to consistently monitor and measure stakeholder engagement.
Conclusions:
We describe how REDCap can provide a time-saving approach to capturing how stakeholders engage in a PCORI-funded study and reporting how stakeholders influenced the study in progress reports back to PCORI.