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.
Frontiers in Public Health Jan 2023
RHCP began in 2004 as a collaboration between Mayo Clinic and an adult education center in Rochester, Minnesota, aiming to address health concerns among immigrant and refugee communities. What started as a response to tuberculosis stigma and low screening rates evolved into a long-term partnership grounded in community-based participatory research (CBPR). Over 18 years, RHCP has co-created culturally tailored interventions for issues like diabetes, heart disease, cancer screening, and COVID-19 communication. The partnership emphasizes shared decision-making, capacity building, and community leadership, with academic and community partners jointly conducting research and sharing results.
Sustaining RHCP has required navigating challenges like project-based funding, limited infrastructure among community organizations, and the need for ongoing training. Despite these hurdles, RHCP has built trust through consistent engagement, reflection, and shared values. It has also served as a learning platform for hundreds of students and community members. The partnership’s success lies in its ability to adapt to changing societal contexts, maintain strong relational and structural dynamics, and center community voice in health equity efforts. RHCP’s experience offers valuable lessons for building and sustaining meaningful, long-term community-academic collaborations.
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 Summer 2022
RHCP explored how recruitment and dissemination in community-based participatory research (CBPR) can work together to build trust and strengthen long-term partnerships. Through focus groups with Hispanic and Somali community members and academic partners, they found that trust, relationship-building, and shared decision-making were key to successful recruitment for a social network survey. Community partners led recruitment efforts using culturally tailored strategies, such as leveraging personal networks and adapting outreach to fit community norms. These efforts were especially important given the political climate and mistrust of institutions at the time.
The dissemination of survey results through a multilingual community event helped reinforce trust and encouraged future participation in research. Attendees felt ownership of the data and saw the findings as a call to action for improving community health. The event also expanded RHCP’s network by engaging new leaders and strengthening connections between diverse communities. This cycle—from recruitment to dissemination and back—demonstrated how CBPR can sustain engagement and build capacity over time. RHCP’s experience shows that when communities are involved in every step of the research process, it leads to more meaningful outcomes and greater willingness to participate in future studies.
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 Summer 2021
RHCP conducted a comprehensive self-evaluation to assess the strength and sustainability of its long-standing community-academic partnership. Using a mix of interviews, surveys, and group discussions, members reflected on the partnership’s history, values, and practices. They found that shared goals, trust, and open communication were key to their success. Community partners played central roles in shaping research priorities and implementing projects, and both academic and community members reported personal growth and stronger relationships through their involvement.
The evaluation revealed that RHCP has made a meaningful impact at multiple levels—personal, community, organizational, and policy. Projects led by RHCP have improved health outcomes, built research capacity, and shifted perceptions of institutions like Mayo Clinic. However, concerns about sustainability and volunteer burnout were common. Partners agreed that long-term infrastructure is needed to support RHCP’s expanding work, but they also recognized the challenge of maintaining autonomy while seeking institutional support. The evaluation process itself was seen as valuable, offering insights to guide future planning and strengthen the partnership’s foundation.
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 Mar 2021
A large survey of Somali adults in Minnesota revealed that chronic conditions like diabetes, hypertension, and obesity are top health concerns for both individuals and the broader community. Participants also emphasized the importance of health behaviors, especially diet and exercise, over infectious diseases. These findings contrast with earlier research that focused more on communicable diseases, highlighting the need to shift attention toward non-communicable conditions that are increasingly affecting Somali immigrants.
The study was led by RHCP using a community-based participatory research approach, ensuring Somali community members were involved throughout the process. The results show a strong overlap between personal and community health priorities, suggesting shared concerns and experiences. Mental health and substance use were noted as more pressing issues for the community than for individuals, possibly due to stigma. The findings underscore the importance of culturally tailored health interventions that address chronic disease prevention and promote healthy lifestyles in immigrant communities.
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 Mar 2021
Efforts to increase participation of racial and ethnic minorities in clinical research have long faced challenges, despite federal mandates and comparable willingness among these groups to participate. A scoping review of 66 studies revealed that community-engaged research (CEnR) strategies—ranging from simply informing communities to full co-leadership—can improve recruitment outcomes. Most studies used descriptive methods and involved community advisory boards (CABs) to guide recruitment efforts. These boards often included trusted local leaders and members of the target population, helping to build trust and tailor outreach strategies to cultural and contextual needs.
While the review found a wide range of successful engagement practices, it also highlighted a lack of comparative studies evaluating which strategies work best. Many efforts operated at lower levels of engagement, such as informing or consulting, which may limit community influence over research decisions. In contrast, higher levels of engagement—like collaboration and co-leadership—were associated with stronger trust, sustainable partnerships, and more effective recruitment. The findings suggest that meaningful community involvement is key to improving equity in research participation, but more rigorous studies are needed to determine the most effective approaches.
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 Feb 2021
Lay health workers from immigrant and refugee communities in Rochester were trained to deliver a family-based nutrition and physical activity program through RHCP. These Family Health Promoters (FHPs) worked directly with families to set small, meaningful health goals, adapting their approach to each family's unique needs and circumstances. Their reflections showed that they used motivational interviewing techniques, respected cultural differences, and tailored lesson content to fit real-life situations. The intervention emphasized building trust and supporting behavior change through flexible, family-centered communication.
As the FHPs gained experience, they reported personal growth and a deeper connection to their work. They became more confident, patient, and emotionally invested in helping families improve their health. Their reflections revealed that the relationships they built were central to their success and transformation. This process evaluation highlights how real-time reflective writing can enhance training and support for lay health workers, offering valuable insights for future health promotion programs in diverse communities.
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 Sept 2020
During the COVID-19 pandemic, RHCP and other community-engaged research (CEnR) partnerships at Mayo Clinic worked to address the disproportionate impact of the virus on vulnerable populations, including immigrants, racial minorities, and those facing socioeconomic hardship. These groups experienced higher infection and death rates due to pre-existing health disparities, limited access to care, and structural barriers like crowded housing and unstable employment. RHCP adapted a crisis and emergency risk communication (CERC) framework to co-create culturally relevant messaging and support systems in multiple languages, helping communities understand prevention, testing, and the broader effects of the pandemic.
Efforts included training communication leaders from diverse backgrounds, collaborating with faith-based organizations, and expanding testing access through trusted community networks. These initiatives highlighted the importance of trust, bidirectional communication, and rapid response. However, challenges such as limited telehealth infrastructure and paused engagement activities revealed gaps in preparedness. The experience underscored the need for sustained, multidisciplinary collaboration that centers community voices and removes structural barriers to health equity, not just during crises but as part of long-term public health strategy.
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 Mar 2016
RHCP successfully recruited 45 Hispanic, Somali, and Sudanese immigrant and refugee families—totaling 160 individuals—for a randomized trial evaluating a culturally tailored physical activity and nutrition intervention. Recruitment was entirely community-led, with local partners designing messages, identifying effective communication strategies, and facilitating outreach. Pretesting revealed that verbal explanations and multiple contacts were more effective than written materials. Language-congruent staff and culturally sensitive approaches, such as oral consent and community-based enrollment events with interpreters, transportation, and childcare, were essential to building trust and ensuring participation.
Key lessons included the importance of engaging community partners throughout the research process, tailoring recruitment strategies to each cultural group, and maintaining frequent, personalized contact with potential participants. Somali families, in particular, required more in-person interactions and community validation before enrolling. The study achieved 97.7% of its family recruitment goal and 94.4% of its individual target, with strong retention and intervention completion rates. These findings underscore the effectiveness of CBPR in overcoming barriers to clinical trial participation among immigrant and refugee populations and offer a replicable model for inclusive, community-driven research.
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.
National Institutes of Health Public Access 2014
RHCP collaborated with Somali, Hispanic, and Cambodian community partners to adapt and translate a diabetes survey for use in Rochester’s immigrant and refugee populations. The original 135-item survey was reduced to 110 items through a participatory process that included editing for cultural relevance, forward and back translation, and extensive group deliberation. This approach ensured semantic, cultural, and conceptual equivalence with the original instruments. Community partners played a central role in revising language for clarity, eliminating ethnocentric content, and addressing literacy challenges by recommending an interview format and visual aids for Likert scales.
The participatory process not only improved the survey’s cultural and linguistic relevance but also shaped its implementation strategy. Community input led to recommendations for gender-concordant facilitators, familiar survey settings, and pre-survey dialogue to build trust. Group deliberation emerged as the most impactful step, fostering community ownership and enhancing the likelihood of meaningful engagement and accurate data collection. RHCP’s experience demonstrates that participatory survey adaptation is feasible and beneficial, strengthening both the quality of the instrument and the partnership’s capacity to address health disparities through culturally grounded research.
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.
National Institute of Health Public Access 2014
An adapted Human Subjects Protection Training (HSPT) program was implemented by RHCP to address barriers faced by community partners in participating fully in community-based participatory research (CBPR). Seven RHCP members from diverse immigrant and refugee backgrounds completed the training, which was modified from Mayo Clinic’s institutional curriculum to better suit community needs—emphasizing flexible scheduling, minimal jargon, and a safe, discussion-based learning environment. The training was delivered in a small group setting with contextualized discussions linking ethical principles to RHCP projects. Participants reported high acceptability (mean score 4.5/5), improved understanding of research safeguards, and increased trust in the research process.
Focus group feedback highlighted that successful HSPT for community partners should be interactive, culturally sensitive, and tailored to CBPR contexts. Participants emphasized the importance of shared learning experiences, which fostered camaraderie, transparency, and empowerment within the partnership. They advocated for broader dissemination of research ethics concepts to community members, suggesting that informed communities would be more likely to engage in ethical research. RHCP’s approach demonstrates that co-designed HSPT can strengthen CBPR partnerships by building capacity, enhancing mutual respect, and promoting equitable participation in research.
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 Dec 2011
RHCP and the Hawthorne Education Center (HEC) in Rochester, Minnesota, collaborated to build community research capacity through focus group training within a community-based participatory research (CBPR) framework. The initiative aimed to empower community members - primarily immigrants and refugees - with qualitative research skills to explore health concerns, particularly tuberculosis. Twenty-seven participants, including both community and academic members, underwent a structured training program that included workshops, practice sessions, and real-world application through ten focus groups. These sessions were designed and led by the trainees, who took on roles such as moderators, note-takers, and analysts. The training emphasized cultural sensitivity, active listening, and participant engagement, resulting in improved trust, stronger partnerships, and enhanced community ownership of the research process.
The program evaluation showed that community members gained proficiency in focus group facilitation, with noticeable improvements in data quality over time. The initiative also fostered institutional change at HEC, where focus groups became a standard tool for informing policy and programming. Despite challenges such as participant attrition and the time-intensive nature of training, the project demonstrated the feasibility and value of equipping community members with research skills. The model has since been replicated, and trained individuals have applied their skills in other community contexts, contributing to broader health equity efforts. This approach highlights the potential of CBPR to not only generate meaningful data but also build sustainable research infrastructure within underserved communities.