Rochester Healthy Community Partnership: Then and now
Community-engaged research partnerships promote health equity through incorporation of regional contexts to inform partnership dynamics that shape research and interventions that reflect community voice and priorities.
Community-engaged research partnerships promote health equity through incorporation of regional contexts to inform partnership dynamics that shape research and interventions that reflect community voice and priorities. Long-term partnerships build trusted relationships and promote capacity building among community and academic partners, but there are many structural barriers to sustaining long-term partnerships.
Here we describe lessons learned from sustaining Rochester Healthy Community Partnership (RHCP), an 18-year community-based participatory research (CBPR) partnership in Southeast Minnesota. RHCP collaborates with immigrant and refugee populations to co-create interventions that promote health equity for community health priorities. Challenges to sustainability include a tension between project-based funding and the needs of long-term community-based research infrastructure. These challenges can be met with a focus on shared CBPR principles, operating norms, partnership dynamics, and governance.
RHCP began in 2004 through identification of a community health priority, defining the community, and establishment of CBPR principles. It grew through identification of broader community health priorities, capacity building for community and academic partners, and integration of diverse learners. We describe the capacity for RHCP to respond to new societal contexts, the importance of partnership dynamics as a barometer for partnership health, and lessons learned about sustainability of the CBPR partnership.
The Recruitment to Dissemination Continuum in Community-based Participatory Research
The dissemination of research findings is a critical component of late translation research, but dissemination remains focused on academic audiences despite multiple studies demonstrating that research participants desire to know the key findings of studies in which they were involved.
Progress in Community Health Partnerships: Research, Education, and Action, Vol. 6.2
Abstract
Background: Dissemination of research findings to participants and communities, particularly among traditionally marginalized groups, is a systemic challenge. In community based participatory research (CBPR), long-term partnerships may foster a link between recruitment to research studies, dissemination of results, and recruitment to future studies.
Objectives: To analyze the recruitment to dissemination continuum of a CBPR study and its potential impact on partnership processes and future research.
Methods: We conducted a qualitative study with four focus groups with community members and academic partners who participated in the recruitment and the dissemination of research findings from a study of Hispanic and Somali social networks in Rochester, Minnesota. Thematic analysis and coding of focus group transcripts was conducted by investigators. The CBPR conceptual model for this partnership
guided the analysis.
Results: Trust, relationship building, and capacity building were key features for successful participant recruitment and research dissemination strategies. Strategies, resources, and relationships used or developed during the recruitment phase of research were directly applied to planning a dissemination event. Participants and members of their communities said they were more likely to participate in future research studies as a result of attending a dissemination event.
Conclusions: This study demonstrated the ways in which recruitment of marginalized populations to research studies and dissemination of study results can manifest as a continuum. This continuum is nurtured by trust, longitudinal relationships, and robust partnership dynamics. These factors fit well within an existing CBPR conceptual model.
Outcomes of a Community-Based Participatory Research Partnership Self-Evaluation: The Rochester Healthy Community Partnership Experience
Community-based participatory research (CBPR) can effectively address health disparities among groups that are historically difficult to reach, disadvantaged, of a minority status, or are otherwise underrepresented in research. Recent research has focused on the science of CBPR partnership constructs and on developing and testing tools for self-evaluation.
Progress in Community Health Partnership: Research, Education, and Action, Volume 15, Issue 2, Summer 2021, pp. 161-175
Abstract
Background: Community-based participatory research (CBPR) can effectively address health disparities among groups that are historically difficult to reach, disadvantaged, of a minority status, or are otherwise underrepresented in research. Recent research has focused on the science of CBPR partnership constructs and on developing and testing tools for self-evaluation. Because CBPR requires substantial investment in human and material resources, specific factors that support successful and sustainable research partnerships must be identified. We sought to describe the evolution, implementation, and results of a self-evaluation of a CBPR partnership.
Methods: Academic and community members of the Rochester Healthy Community Partnership (RHCP) and researchers from the University of New Mexico-Center for Participatory Research collaborated to evaluate RHCP with qualitative and quantitative research methods and group analysis.
Results: The self-evaluation was used to provide an overall picture of the "health" of the partnership, in terms of sustainability and ability to effectively collaborate around community priorities. RHCP members revisited the partnership's mission and values; identified associations between partnership practices, dynamics, and outcomes; and elicited insight from community and academic partners to help guide decisions about future directions and the sustainability of the partnership. Positive partnership dynamics were associated with perceived improvements in health and equity outcomes.
Conclusions: Although engaging in a comprehensive self-evaluation requires substantial investment from stakeholders, such assessments have significant value because they enable partners to reflect on the mission and values of the partnership, explore the history and context for its existence, identify factors that have contributed to outcomes, and plan strategically for the future.
An Assessment of Health Priorities Among a Community Sample of Somali Adults.
Health priorities for the Somali population in the United States (US) have been changing since their arrival to the US in the early 1990s.
Journal of Immigrant and Minority Health. March 2021.
Abstract
Background: Health priorities for the Somali population in the United States (US) have been changing since their arrival to the US in the early 1990s. Somali populations have consistently been in the top three total number of African refugees immigrating to the United States over the past three decades and were the second largest group of refugees from Africa in 2019.
Methods: This study was conducted in 2018 as part of a larger RHCP survey of Somali participants. The purpose of the survey was to assess the effects of social networks on weight and obesogenic behaviors [19]. Because the planned survey was among the largest reported with a community sample of Somalis, RHCP community partners advocated for an embedded assessment of health priorities more broadly. This was a CBPR study where community and academic members of RHCP worked together in all phases of the study.
Results: A total of 646 participants responded to the survey. The majority (93%) of participants were born outside of the US. The mean age was 37.9 years with 43% female. The majority (66%) had a high school level education or less. Annual family income was less than $50,000 for 92% of participants and 90% had health insurance in the last 12 months.
Conclusion: The findings of this study show a significant overlap of health priorities among Somali individuals and their families compared to perceived priorities for the community as a whole. Health behaviors related to diet and exercise, diabetes, obesity, and hypertension were considered higher priorities than infectious diseases. These health priorities underscore the need for Somali health partnerships to focus on non-communicable diseases.
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 ideal of generalizability and equity of research findings and products.
Mayo Clinic Proceedings. September 2020.
Abstract: 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.
Lay health worker as interventionist training: reflective writing in US family health promotion practice.
Lay health worker-led health promotion interventions are well received within racial and ethnic minority communities. Increasing numbers of trained lay health workers will be needed to meet global health goals.
Health Promotion International. February 2021.
Abstract: Lay health worker-led health promotion interventions are well received within racial and ethnic minority communities. Increasing numbers of trained lay health workers will be needed to meet global health goals. The purpose of this process evaluation was to gain insights about how lay health worker as interventionists used theory-based approaches within a nutrition and physical activity health behavior change intervention in a clinical trial enrolling immigrant and refugee families. Data were comprised of ongoing reflective writing statements from four health workers about their implementation of the intervention. Using content analysis three themes emerged: (i) encouraging setting of small, family focused and relevant goals, (ii) being flexible in content delivery and (iii) being personally transformed (i.e. gained a sense of meaning from their experience). Lay health worker interventionist reflections on practice revealed they delivered the intervention within the primacy of the family partnering relationship by attending to unique family needs, and adjusting educational content and goal setting accordingly. Our results provide guidance for training and process evaluation of lay health worker intervention delivery in ethnically and racially diverse populations. Incorporating real-time reflection upon what was learned about skills of facilitating family motivation and family confidence enhanced affective learning and may be useful in future research studies and health promotion practice. The processes identified including setting small goals, flexibility and personal transformation could be considered in future lay health worker-delivered health promotion interventions.
Community Engagement With Vulnerable Populations
The coronavirus disease 2019 (COVID-19) pandemic has impacted vulnerable populations disproportionately, including those affected by socioeconomic disadvantage, racial discrimination, low health literacy, immigration status, and limited English proficiency. African Americans, Hispanics, and Native Americans are dying at considerably higher rates across the country than whites.
Mayo Clinic Proceedings. Volume 95, Issue 9. September 2020.
Background: The coronavirus disease 2019 (COVID-19) pandemic has impacted vulnerable populations disproportionately, including those affected by socioeconomic disadvantage, racial discrimination, low health literacy, immigration status, and limited English proficiency. African Americans, Hispanics, and Native Americans are dying at considerably higher rates across the country than whites.
Conclusion: The social and structural determinants of health have been understood for decades, and such determinants are also relevant to the disparities in health care that are exacerbated by the current COVID-19 crisis. The focus of multisector collaboration and community engagement should be to inform programs and policies that will eliminate the disproportionate impact of pandemics on vulnerable communities. Indispensable to such initiatives are collaborative, community-led solutions in removing structural barriers to health equity that currently exist.
The Development of a Collaborative Self-Evaluation Process for Community-Based Participatory Research Partnerships Using the Community-Based Participatory Research Conceptual Model...
Established community-based participatory research (CBPR) partnerships need tools to assist with self-evaluation of the effectiveness and engagement with CBPR principles and to inform ongoing work. A growing part of the CBPR field is focused on the evaluation of partnering processes and outcomes.
Program Community Health Partnership: Research, Education and Action, 2019;13(3):225-235
Background: Established community-based participatory research (CBPR) partnerships need tools to assist with self-evaluation of the effectiveness and engagement with CBPR principles and to inform ongoing work. A growing part of the CBPR field is focused on the evaluation of partnering processes and outcomes.
Methods: We collaboratively developed and implemented a facilitated self-evaluation using adaptations of existing tools and the CBPR conceptual model. Partners contributed through surveys and qualitative interviews. Initially, data were analyzed collaboratively by members of RHCP and UNM-CPR, but RHCP partners further processed and consolidated findings, leading to the development of key questions that guided a full partnership discussion of action steps.
Results: Our process confirmed the adaptability of existing tools and the CBPR conceptual model for the purpose of partnership reflection and self-evaluation. We offer the key findings of our assessment of partnering practices and directions for the future, and share our approach to collaborative analysis and dissemination. Our discussion includes lessons learned, with applicability to other established partnerships.
Conclusion: Our experience indicates that collective reflection is empowering for members of established partnerships, which can be facilitated by engagement in self-evaluation through the use of adapted, available tools. The incorporation of participatory processes adds complexity, but leads to a level of resonance and usefulness that would not have been obtained from a traditional evaluation.
Lessons Learned from Community-Led Recruitment of Immigrants and Refugee Participants for a Randomized, Community–Based Participatory Research Study
Ethnic minorities remain underrepresented in clinical trials despite efforts to increase their enrollment.
Journal of Immigrant and Minority Health, (2016) 18(5): 1241-1245.
Background: Ethnic minorities remain underrepresented in clinical trials despite efforts to increase their enrollment. Although community-based participatory research (CBPR) approaches have been effective for conducting research studies in minority and socially disadvantaged populations, protocols for CBPR recruitment design and implementation among immigrants and refugees have not been well described.
Methods: We used a community-led and community-implemented CBPR strategy for recruiting 45 Hispanic, Somali, and Sudanese families (160 individuals) to participate in a large, randomized, community-based trial aimed at evaluating a physical activity and nutrition intervention.
Results: We achieved 97.7 % of our recruitment goal for families and 94.4 % for individuals.
Conclusion: Use of a CBPR approach is an effective strategy for recruiting immigrant and refugee participants for clinical trials. We believe the lessons we learned during the process of participatory recruitment design and implementation will be helpful for others working with these populations.
Lessons Learned: Cultural and linguistic enhancement of surveys through community-based participatory research
Surveys are frequently implemented in community-based participatory research (CBPR), but adaptation and translation of surveys can be logistically and methodologically challenging when working with immigrant and refugee populations.
Backgrounds: Surveys are frequently implemented in community-based participatory research (CBPR), but adaptation and translation of surveys can be logistically and methodologically challenging when working with immigrant and refugee populations.
Objective: To describe a process of participatory survey adaptation and translation.
Methods: Within an established CBPR partnership, a survey about diabetes was adapted for health literacy and local relevance and then translated through a process of forward translation, group deliberation, and back translation.
Lessons Learned: The group deliberation process was the most time-intensive and important component of the process. The process enhanced community ownership of the larger project while maximizing local applicability of the product.
Conclusions: A participatory process of survey adaptation and translation resulted in significant revisions to approximate semantic, cultural, and conceptual equivalence with the original surveys. This approach is likely to enhance community acceptance of the survey instrument during the implementation phase.
Perceived impact of human subjects protection training on community partners in community based participatory research
Human subject protection training (HSPT) is a requirement of Institutional Review Boards for individuals who engage in research.
Background: Human subject protection training (HSPT) is a requirement of Institutional Review Boards for individuals who engage in research. The lack of HSPT among community partners may contribute to power imbalance between community and academic members of community-based participatory research (CBPR) partnerships. The Rochester Healthy Community Partnership (RHCP) is an established CBPR partnership in Minnesota who works primarily with immigrant and refugee populations.
Objective: To describe the implementation and evaluation of HSPT among community members of a CBPR partnership.
Methods: Seven community partners participated in HSPT through adaptation of an existing institutional program. Evaluation of program acceptability was measured through a 5-item survey (5-point Likert scales). A focus group with all 7 participants was conducted to evaluate impact of training on perceptions of research, characteristics of a successful program, and potential value of training to CBPR partnerships. Coding and inductive analysis were done on the transcript with NVIVO-9 software.
Results: The HSPT program was highly acceptable (mean score= 4.5 ± 0.2). Focus groups revealed that training implementation should be done as a cohesive group with the opportunity to discuss concepts as they pertain to partnership projects. Training fostered an encouraging and safe environment, accommodated diverse learning styles, and promoted interaction. Participants reported improved trust in research as a result of the training. Perceived impact of the training on the CBPR partnership included improved transparency and enhanced camaraderie while establishing essential knowledge required for community leaders.
Conclusions: HSPT is feasible among community members of a CBPR partnership, and may improve perceptions of research while strengthening capacity of partnerships to impact community health.
Capacity Building Through Focus Group Training in Community-Based Participatory Research
Community-based participatory research (CBPR) emphasizes collaborative efforts among communities and academics where all members are equitable contributors.
Education for Health, Volume 24, Issue 3, 2011
Background: Community-based participatory research (CBPR) emphasizes collaborative efforts among communities and academics where all members are equitable contributors. Capacity building through training in research methodology is a potentially important outcome for CBPR partnerships.
Objectives: To describe the logistics and lessons learned from building community research capacity for focus group moderation in the context of a CBPR partnership.
Methods: After orientation to CBPR principles, members of a US suburban community underwent twelve hours of interactive learning in focus group moderation by a national focus group expert. An additional eight-hour workshop promoted advanced proficiency and built on identified strengths and weaknesses. Ten focus groups were conducted at an adult education center addressing a health concern previously identified by the center’s largely immigrant and refugee population. Program evaluation was achieved through multiple observations by community and academic-based observers.
Results: Twenty-seven community and academic members were recruited through established relationships for training in focus group moderation, note-taking, and report compilation. Focus group training led to increased trust among community and research partners while empowering individual community members and increasing research capacity for CBPR.
Conclusion: Community members were trained in focus group moderation and successfully applied these skills to a CBPR project addressing a health concern in the community. This approach of equipping community members with skills in a qualitative research method promoted capacity building within a socio-culturally diverse community, while strengthening community-academic partnership. In this setting, capacity building efforts may help to ensure the success and sustainability for continued health interventions through CBPR.