Implementing a Community Engagement Model to Develop a Community-Driven Oral Health Intervention.

BACKGROUND: Using community-engaged research may result in interventions that reduce infant oral health disparities in underserved populations. OBJECTIVE: Develop community partnerships to create a sustainable infant oral health program that meets specific community-identified needs and provides an interprofessional education experience. METHODS: Partnering with the Homewood Community Engagement Center, researchers engaged and surveyed key community partners to assess the need for an infant oral health invention. LESSONS LEARNED: Community-identified organizing principles and barriers became the framework for, "Healthy Teeth, Healthy Me," a community-driven infant oral health program. Barriers, like access to care, were addressed with community-specific solutions like agreements with local dental clinical for referrals. CONCLUSIONS: Community partnerships can be leveraged to develop oral health programs that fit specific community needs and provide resources to families at greatest risk for child dental caries. Community engagement can be used to modify the intervention to meet oral health needs of other vulnerable communities.

Lessons from Two Latino Communities Working with Academic Partners to Increase Access to COVID-19 Testing.

OBJECTIVE: We sought to examine the experiences of community partners in a community-academic partnership to promote COVID-19 testing in two majority Latino communities. METHODS: We conducted semistructured, in-depth interviews in English and Spanish with community-based organization leaders and community health workers/promotoras (n = 10) from June to July 2021. Interviews focused on identifying partner roles in planning and testing implementation and evaluating communication among partners. Interviews were transcribed and analyzed in ATLAS.ti version 8.4.5. Analyses involved deductive and inductive approaches to identify key themes. RESULTS: Participants described both strengths and challenges to the collaborative approach within each of three core themes: building relationships in the time of COVID-19; uplifting existing community leadership; and commitment of the academic partners and community-based organizations to conduct partnership activities in Spanish. CONCLUSION: Community-academic partnerships that invest in strong relationships, community leadership, and a commitment to the community's preferred language offer a promising approach to addressing COVID-19 testing barriers. Findings provide direction for future research on how community members and academic partners can come together to inform strategies to continue addressing the COVID-19 pandemic.

Use of Community-Based Participatory Research Partnerships to Reduce COVID-19 Disparities Among Marshallese Pacific Islander and Latino Communities - Benton and Washington Counties, Arkansas, April-December 2020.

Marshallese and Latino communities in Benton and Washington counties, Arkansas, were disproportionately affected by COVID-19. We evaluated the effectiveness of a comprehensive community-based intervention to reduce COVID-19 disparities in these communities. We examined all laboratory-confirmed COVID-19 cases in the 2 counties reported from April 6, 2020, through December 28, 2020. A 2-sample serial t test for rate change was used to evaluate changes in case rates before and after implementation of the intervention. After implementation, the proportions of cases among Marshallese and Latino residents declined substantially and began to align more closely with the proportions of these 2 populations in the 2 counties. Infection rates remained lower throughout the evaluation period, and weekly incidence also approximated Marshallese and Latino population proportions. Leveraging community partnerships and tailoring activities to specific communities can successfully reduce disparities in incidence among populations at high-risk for COVID-19 .

Gout prevalence in the Hmong: a prime example of health disparity and the role of community-based genetic research.

Individuals of distinct Asian backgrounds are commonly aggregated as Asian, which could mask the differences in the etiology and prevalence of health conditions in the different Asian subgroups. The Hmong are a growing Asian subgroup in the United States with a higher prevalence of gout and gout-related comorbidities than non-Hmong. Genetic explorations in the Hmong suggest a higher prevalence of genetic polymorphisms associated with an increased risk of hyperuricemia and gout. History of immigration, acculturation, lifestyle factors, including dietary and social behavioral patterns, and the use of traditional medicines in the Hmong community may also increase the risk of developing gout and lead to poor gout management outcomes. Engaging minorities such as the Hmong population in biomedical research is a needed step to reduce the burden of health disparities within their respective communities, increase diversity in genomic studies, and accelerate the adoption of precision medicine to clinical practice.

People of different Asian heritage are commonly grouped as Asian, which could mask the differences in the causes and rates of specific health conditions in the different Asian subgroups. The Hmong are a growing Asian group in the United States with higher gout rates and gout-related conditions than non-Hmong. Genetic research in the Hmong suggests higher rates of genetic changes associated with higher urate levels and increased gout risk. The immigration to the United States and adaptation to the Western lifestyle could also affect the Hmong's risk for developing elevated urate levels and gout. Some lifestyle factors, including dietary and social behavioral patterns, and the use of traditional medicines in the Hmong, may also increase their risk of developing gout and lead to poor gout management. Engaging minorities such as the Hmong population in clinical research is a needed step to reduce the burden of health disparities within their respective communities, increase diversity in genetic studies, and widen the application of precision medicine to clinical practice.

Community-Engaged Approaches for Minority Recruitment Into Clinical Research: A Scoping Review of the Literature.

Underrepresentation of racial and ethnic minority populations in clinical research persists in the United States, highlighting the unmet ideals of generalizability and equity of research findings and products. Previous systematic reviews exploring various facets of this phenomenon concluded that community engagement with minority groups may effectively promote recruitment and retention, but the ways in which community-engaged approaches have been used for recruitment have not been examined. We performed a scoping review of the literature to identify studies of community-engaged recruitment processes. The search resulted in 2842 articles, of which 66 met inclusion criteria. These articles demonstrated a relatively large literature base of descriptive studies conveying details of community engagement approaches to enhance recruitment of minority research participants. We summarize key aspects of current practices across the spectrum of community engagement. A gap in the literature is the relative lack of the comparative studies among different engagement strategies.

Recommendations to researchers for aiding in increasing American Indian representation in genetic research and personalized medicine.

Increasing American Indian/Alaska Native (AI/AN) representation in genetic research is critical to ensuring that personalized medicine discoveries do not widen AI/AN health disparities by only benefiting well-represented populations. One reason for the under-representation of AIs/ANs in research is warranted research distrust due to abuse of some AI/AN communities in research. An approach to easing the tension between protecting AI/AN communities and increasing the representation of AI/AN persons in genetic research is community-based participatory research. This approach was used in a collaboration between a tribe and academic researchers in efforts to increase AI/AN participation in genetic research. From the lessons learned, the authors propose recommendations to researchers that may aid in conducting collaborative and respectful research with AI/AN tribes/communities and ultimately assist in increasing representation of AIs/ANs in personalized medicine discoveries.

Young people's advisory groups in health research: scoping review and mapping of practices.

BACKGROUND: Young people's advisory groups (YPAGs) for research are comprised of children or adolescents who work with researchers to shape different stages of the research process. Their involvement is expected to ensure studies better reflect the preferences and needs of targeted youth populations. However, despite their increasing use in health research, there is little systematic evidence on the methods and impacts associated with YPAGs. METHOD: To address this gap, we conducted a scoping review of YPAGs in youth-focused health studies. We systematically searched MEDLINE for empirical studies in populations between 12 years and 18 years of age published in 2019. If a potential YPAG was identified, authors were contacted for additional information about the activities and level of involvement of the YPAG. FINDINGS: Of all studies that collected primary data from persons aged 12-18 years, only 21 studies reported using youth advice during their research. This represents less than 1% of all published empirical child and adolescent studies. There was variation in the type of research activity undertaken by YPAGs and their level of involvement. Most studies involved YPAGs in co-production of research design and/or in dissemination activities. The majority of authors that responded were positive about the impact of YPAGs. INTERPRETATION: Recommendations for consistent reporting of YPAG involvement in empirical studies include reporting on the match between YPAG and study populations, frequency/format of meetings, and the nature and level of involvement.

Using Participatory Mapping to Diagnose Upstream Determinants of Health and Prescribe Downstream Policy-Based Interventions.

Participatory mapping is a powerful methodology for working with community residents to examine social and environmental determinants of public health disparities. However, this empowering methodology has only been applied sparingly in public health research and practice, with limited examples in the literature. To address this literature gap, we 1) review participatory mapping approaches that may be applied to exploring place-based factors that affect community health, and 2) present a mixed-methods participatory geographic information systems (PGIS) examination of neighborhood assets (eg, streetlights) and challenges (eg, spaces of crime and violence) related to access to public parks in South Los Angeles, California. By taking a participatory, fine-grained spatial approach to examining public park access with input from 40 South Los Angeles adolescent and adult residents, our community-engaged PGIS approach identified tobacco shops as previously unrecognized community institutions that are associated with increased neighborhood crime and violence. Our investigation revealed unique challenges in community-level public park access that would likely have been overlooked by conventional spatial epidemiology and social science methods, such as surveys and questionnaires. Furthermore, our granular community-informed approach supported resident and stakeholder advocacy efforts toward reducing the proliferation of tobacco shops through community organizing and policy change initiatives. We thus contend that it would benefit public health research and practice to further integrate empowering, grassroots-based participatory mapping approaches toward informing advocacy efforts and policies that promote health and well-being in disadvantaged communities.

Key issues for participatory research in the design and implementation of humanitarian assistance: a scoping review.

BACKGROUND: Participatory approaches that engage affected populations are increasingly applied in humanitarian health programs in concert with emerging accountability frameworks and the rapid growth of research in these settings. Participatory initiatives within this domain appear to be largely adopted at an operational level and are infrequently reported as a component of research efforts. Yet the evidence of the benefits of research involving community members is growing worldwide. This is the first review of participatory research (PR) in humanitarian settings. OBJECTIVES: This study sought to understand the extent to which PR values and practices have been adopted in humanitarian health programs and to explore key issues in applying PR in this context. METHODS: This scoping review was based on the approach developed by Arksey and O'Malley. The search for relevant peer-reviewed articles included scientific databases, a humanitarian database, targeted journals and online resources published since 2009. Eleven articles were retrieved and reviewed to identify practices and key issues related to conducting PR in humanitarian settings. RESULTS: Four key themes were identified: building trust with local research stakeholders and participants; the importance of contextual understanding; implications of collaborating with affected populations in PR, and neutrality of researchers and Non-Governmental Organizations (NGOs). Study teams considered PR as a valued approach where there was mistrust or a need for contextualized understanding. The studies described how adaptations made during the study optimized collaboration with affected populations and how the presence of NGOs influenced the approach and results of PR. CONCLUSIONS: One of the most important contributions of humanitarian health programs is to develop 'medical practices that are better adapted to the living conditions and priorities of patients who are generally ignored'. Participatory approaches, such as PR, support the development of health-related practices that are more relevant and sustainable for affected populations.

Can care coordination across levels be improved through the implementation of participatory action research interventions? Outcomes and conditions for sustaining changes in five Latin American countries.

BACKGROUND: Finding new strategies for care integration has become a policy priority for many fragmented health systems in Latin America. Although the implementation of interventions through a participatory action research (PAR) approach is considered to be more effective in achieving organizational change, its application is scarce. This study, part of the research project Equity-LA II, aims to analyze the impact of PAR interventions on care coordination across levels, and key aspects for their sustainability and transferability, from the stakeholder viewpoint in healthcare networks of Brazil, Chile, Colombia, Mexico and Uruguay. Different interventions were designed and implemented through a PAR process to improve communication and clinical agreement between primary care and secondary care doctors: joint meetings to discuss clinical cases and/or training; shared care guidelines; offline virtual consultations; a referral and reply letter; and an induction program. METHODS: A qualitative, descriptive-interpretative study was conducted in the healthcare network of each country. Focus groups and semi-structured individual interviews were conducted with a criterion sample of participants: local steering committee (29) and professional platform members (28), other health professionals (49) and managers (28). Thematic content analysis was conducted, segmented by country and type of intervention. RESULTS: Informants highlighted that joint meetings based on reflexive methods contributed substantially to improving contextually relevant elements of clinical management coordination - communication in patient follow-up, clinical agreement, appropriateness of referrals - and also administrative coordination. The meetings, alongside the PAR process, also helped to improve interaction between professionals - knowing each other personally and mutual trust - thus fostering willingness to collaborate. The PAR approach, moreover, served to spread awareness of the coordination problems and need for intervention, encouraging greater commitment and interest in participating. No noteworthy contributions were identified in remaining interventions due to low uptake. A necessary condition for the sustainability and replicability was that PAR process had to be used appropriately in a favourable context. CONCLUSIONS: Evidence is provided on the substantial contribution of interventions to improving locally relevant clinical coordination elements and professional interaction when implemented through an adequate PAR process (in terms of time, method and participation levels), a necessary condition for their sustainability and replicability.

'We walked side by side through the whole thing': A mixed-methods study of key elements of community-based participatory research partnerships between rural Aboriginal communities and researchers.

OBJECTIVES: To advance the rural practice in working with Aboriginal communities by (a) identifying the extent of community partners' participation in and (b) operationalising the key elements of three community-based participatory research partnerships between university-based researchers and Australian rural Aboriginal communities. DESIGN: A mixed-methods study. Quantitative survey and qualitative one-on-one interviews with local project implementation committee members and group interviews with other community partners and project documentation. SETTING: Three rural Aboriginal communities in New South Wales. PARTICIPANTS: Thirty-seven community partners in three community-based participatory research partnerships of which 22 were members of local project implementation committees and 15 were other community partners who implemented activities. INTERVENTION: Community-based participatory research partnerships to develop, implement and evaluate community-based responses to alcohol-related harms. MAIN OUTCOMES MEASURES: Community partners' extent of and experiences with participation in the community-based participatory research partnership and their involvement in the development and implementation processes. RESULTS: Community partners' participation varied between communities and between project phases within communities. Contributing to the community-based participatory research partnerships were four key elements of the participatory process: unique expertise of researchers and community-based partners, openness to learn from each other, trust and community leadership. CONCLUSION: To advance the research practice in rural Aboriginal communities, equitable partnerships between Aboriginal community and research partners are encouraged to embrace the unique expertise of the partners, encourage co-learning and implement community leadership to build trust.

Participatory epidemiology: Reviewing experiences with contexts and actions.

This paper reviews experiences with participatory epidemiology (PE) and focuses in pastoralist areas of Africa where much of the early development and institutionalization of PE occurred. The paper discusses the importance of context when designing PE activities and framing study questions, and uses the example of changing livelihoods in pastoralist areas, and marked wealth and gender differences within communities. By reference to a recently proposed definition of PE that includes community empowerment, the paper describes the marked socio-economic and gender differentiation in pastoralist communities. In these contexts, questions of "disease control for who?" and "empowerment for who?" arise, as does the need to move beyond the concept of communities as homogenous social and economic units. By reference to the persistent complex emergencies and other humanitarian crises, the paper discusses community participation and how functional participation in programmes and PE can contribute to successful livestock disease control. In contrast, empowering forms of participation are difficult to achieve in humanitarian contexts and might not be needed to achieve effective livestock disease control. In non-humanitarian contexts, and secure countries with stable governments, national control programmes for important transboundary or zoonotic diseases usually require control strategies that can be applied consistently across areas, and with disease policy, funding, coordination and implementation controlled centrally. In contrast, empowerment in PE implies local, community-level decision-making and control of resources. The paper also discusses importance of designing PE studies that focus on action, and participatory evaluation of new or adapted disease control methods with communities.

"Can we agree on that"? Plurality, power and language in participatory research.

Participatory epidemiology (PE) is a method that gathers data from groups through focus group interviews and participatory visual and scoring exercises. The method is often used in poor communities in low-income countries where it is hard to obtain conventional epidemiological data. This paper draws on research on the public sphere and democratic deliberation, along with research on language and interpretation, to suggest how PE research could be better equipped to account for diversity in local knowledge, include minority views and acknowledge power dynamics. These aspects are discussed under the three themes of 'plurality', 'power' and 'language'. A review of highly-cited PE literature suggests that PE research engages with plurality and power to a very limited extent, and only marginally more so with language and translation. Examples are taken from the authors' own PE research on African swine fever in -Uganda, classical swine fever in Germany, peste des petits ruminants (PPR) in Eastern Europe, and Ugandan pastoralists' understanding of cattle disease to provide more detail as to why conventional PE studies might fail to record issues of plurality, power and language, and also to suggest how this can be addressed. With reference to the literature on the public sphere and democratic deliberation, and on language and interpretation, this paper concludes with some suggestions as to how to take plurality, power and language into greater consideration in PE studies in future, thus improving the validity and reliability of PE data.

DOHaD in low- and middle-income countries: a systematic review exploring gaps in DOHaD population studies.

Low- and middle-income countries (LMICs) are disproportionately affected by non-communicable diseases (NCDs), accounting for more than 80% of NCD-related deaths globally. Research into early-life influences on these diseases via the developmental origins of health and disease (DOHaD) paradigm has informed health promotion interventions and policies focused on optimising early-life health. However, little is known about where this research occurs and whether it reaches and reflects the countries most affected by NCDs. This review searched for DOHaD studies that investigated relationships between factors during pregnancy and at birth, with later-life NCD incidence, risk and related mortality. The aim of this review was to identify where DOHaD research has been conducted and whether this focus is appropriate and relevant, given the differential burden of NCDs. Embase, MEDLINE and Scopus were searched, and eligibility screening processes identified 136 final articles. This review found that 49.7% of DOHaD research was conducted on populations within Western Europe, 15.9% in East Asia, 12.7% in North America, 8.3% in Latin America and the Caribbean, and fewer in Australasia, South Asia, the Middle East, the Africas, and Central Asia. When categorised by income, this review found that 76.4% of studies were based in high-income countries, 19.1% in upper-middle-income and 4.5% in lower-middle-income countries. No studies were based in low-income countries. There is therefore a marked disconnect between where DOHaD research is undertaken and where the greatest NCD disease burden exists. Increasing DOHaD research capacity in LMICs is crucial to informing local strategies that can contribute to reducing the incidence of NCDs.

Searching for new community engagement approaches in the Netherlands: a realist qualitative study.

BACKGROUND: Community engagement is increasingly seen as key to improving healthcare systems and to increasing communities' involvement in the shaping of their own communities. This paper describes how 'community engagement' (CE) is understood and being operationalised in the Dutch healthcare system by investigating the CE approaches being implemented in six different regions and by examining engaged citizens' and professionals' experiences of those CE approaches. METHODS: For this realist study, interviews and focus groups were held with citizens (16) and professionals (42) involved in CE approaches in the six regions. Additionally, CE-related activities were observed to supplement interview data. RESULTS: This study shows that citizens and professionals defined and experienced CE differently and that they differed in who they felt had ownership of CE. The CE approaches implemented in community-led initiatives and organisationally-led initiatives varied accordingly. Furthermore, both citizens and professionals were searching for meaningful ways for citizens to have more control over healthcare in their own communities. CONCLUSION: CE can be improved by, first of all, developing a shared and overarching vision of what CE should look like, establishing clear roles and remits for organisations and communities, and taking active measures to ensure CE is more inclusive and representative of harder-to-reach groups. At the same time, to help ensure such shared visions do not further entrench power imbalances between citizens and professionals, professionals require training in successful CE approaches.

Implementing Two Randomized Pragmatic Trials of HPV Self-sampling among Underserved Women: Challenges and Lessons Learned.

BACKGROUND: Haitian and Hispanic immigrant women experience substantial disparities in cervical cancer screening. Recently, our team completed two randomized trials of human papillomavirus (HPV) self-sampling as a cervical cancer screening strategy among Haitian and Hispanic women, using a community-based participatory research (CBPR) approach. OBJECTIVE: To reflect on lessons learned in the process of completing two large randomized cancer screening trials within underserved communities. METHODS: Haitian and Hispanic women were randomized to HPV self-sampling versus navigation to Pap smear versus standard cervical cancer screening education in the first trial, and HPV self-sampling delivered in-person versus via mail in the second trial. LESSONS LEARNED: During the two trials, our team encountered several challenges. The lessons learned from these challenges allowed for the strengthening of our community partnerships, study procedures, and our ability to conduct CBPR within an academic setting. CONCLUSIONS: Lessons learned from our trials may be useful to other researchers engaging in CBPR within underserved communities.

Incorporating Community Engagement in Primary Care Research Training: Eleven-Year Outcomes.

BACKGROUND: In response to a local workforce need for community-engaged scholars, a community-based participatory research (CBPR) curriculum was incorporated into an established primary care research fellowship. The program prepares researchers to partner with at-risk communities to address root causes and cultural, linguistic, and systems barriers that contribute to health disparities. OBJECTIVES: To describe the context, design, implementation and evaluation of the Academic Fellowship in Primary Care and Community-Engaged Research. METHODS: The traditional primary care research curriculum was enhanced with expanded enrollment, including social scientists with complementary expertise to physician fellows; a structured CBPR seminar series; involvement of fellows in mentored community-academic partnership projects with progression to independence; and relevant teaching and mentoring experiences. EVALUATION: Between 2007 and 2016, 22 fellows enrolled, with 16 in the CBPR track. Fellows demonstrated significant prepost gain in self-assessed competency in CBPR. During their 2- to 3-year training period, each CBPR fellow developed at least one community-academic partnership project, and they collectively produced more than 50 articles and 70 regional or national presentations, and mentored 29 medical student projects. Graduates have assumed leadership positions in academia, and have improved institutional capacity for community-engaged research, teaching, and practice. CONCLUSIONS: Important factors related to success and feasibility of CBPR training within a 2- to 3-year timeframe were having dedicated, experienced faculty mentors with existing authentic, trusted community partners, and dedicated funding for new community-academic partnership projects. This model can prepare primary care researchers and teachers to genuinely collaborate with vulnerable communities to address important health priorities and advance health equity.

Implementation and Evaluation of a Dual-Track Research Training Program for Community Members and Community-Based Organizations.

BACKGROUND: It is a public health priority to increase community research participation to improve health outcomes and eliminate health disparities. There is a need for effective research training programs that build community stakeholders' capacity to engage as equitable partners. OBJECTIVES: To describe the collaborative process of implementing and evaluating a dual-track community research training program-Meharry Vanderbilt Community Engaged Research Core-Community Research Training Program (MVC-CRT) Program-and present participant evaluations. METHODS: The MVC-CRT is a six-session community-based organization (CBO) curriculum and a three-session community member (CM) curriculum, based on needs identified by various community stakeholders, that was piloted in 2016. Immediately post-training, an outcome evaluation (surveys) was used to measure trainees' confidence relative to 30 learning objectives for the combined training sessions (e.g., Introduction to research), satisfaction in preparing them for research roles, and impact on research activities (e.g., building sustainable partnerships). 2 and 3 months after training, a process evaluation (focus groups) was used to assess each session's flow, materials, group discussions, and facilitators. RESULTS: Trainees' immediate post-training confidence increased or remained the same across 26 of 30 learning objectives. Two to 3 months after training, trainees reported sustained confidence, perceived increased knowledge, and increased intentions to engage in or improve research activities. All participants were satisfied with the program and felt better prepared for research roles. CONCLUSIONS: Tailored community research training may result in positive outcomes that can ultimately increase community capacity to be equitable partners in research in support of efforts to improve health outcomes and eliminate health disparities.

Measurement Approaches to Partnership Success: Theory and Methods for Measuring Success in Long-Standing Community-Based Participatory Research Partnerships.

BACKGROUND: Numerous conceptual frameworks have been developed to understand how community-based participatory research (CBPR) partnerships function, and multiple measurement approaches have been designed to evaluate them. However, most measures are not validated, and have focused on new partnerships. To define and assess the meaning of success in long-standing CBPR partnerships, we are conducting a CBPR study, Measurement Approaches to Partnership Success (MAPS). In this article we describe the theoretical underpinnings and methodological approaches used. OBJECTIVES: The objectives of this study are to 1) develop a questionnaire to evaluate success in long-standing CBPR partnerships, 2) test the psychometric qualities of the questionnaire, 3) assess the relationships between key variables and refine the questionnaire and theoretical model, and 4) develop mechanisms and a feedback tool to apply partnership evaluation findings. METHODS: Methodological approaches have included: engaged a community-academic national Expert Panel; conducted key informant interviews with Expert Panel; conducted a scoping literature review; conducted a Delphi process with the Expert Panel; and revised the measurement instrument. Additional methods include: conduct cognitive interviews and pilot testing; revise and test final version of the questionnaire with long-standing CBPR partnerships; examine the reliability and validity; analyze the relationship among variables in the framework; revise the framework; and develop a feedback mechanism for sharing partnership evaluation results. CONCLUSIONS: Through the application of a theoretical model and multiple methodological approaches, the MAPS study will result in a validated measurement instrument and will develop procedures for effectively feeding back evaluation findings in order to strengthen authentic partnerships to achieve health equity.