Steps for Meaningful Community Partnership in Research: An Intersectional Feminist Research Program Case Study

Use of community-based participatory research (CBPR) approaches is increasing with the goal of making more meaningful and impactful advances in eliminating cancer-related health disparities. While many reports have espoused its advantages, few investigations have focused on comparing CBPR-oriented recruitment and retention. Consequently, the purpose of this analysis was to report and compare two different CBPR approaches in two cancer prevention studies. We utilized frequencies and Chi-squared tests to compare and contrast subject recruitment and retention for two studies that incorporated a randomized, controlled intervention design of a dietary and physical activity intervention among African Americans (AA). One study utilized a de-centralized approach to recruitment in which primary responsibility for recruitment was assigned to the general AA community of various church partners whereas the other incorporated a centralized approach to recruitment in which a single lay community individual was hired as research personnel to lead recruitment and intervention delivery. Both studies performed equally well for both recruitment and retention (75 and 88 % recruitment rates and 71 and 66 % retention rates) far exceeding those rates traditionally cited for cancer clinical trials (~5 %). The de-centralized approach to retention appeared to result in statistically greater retention for the control participants compared to the centralized approach (77 vs. 51 %, p < 0.01). Consequently, both CBPR approaches appeared to greatly enhance recruitment and retention rates of AA populations. We further note lessons learned and challenges to consider for future research opportunities.

OBJECTIVES: This commentary seeks to highlight the benefits of community-based participatory research (CBPR) and promote its use in the violence field. Community perspectives remain underrepresented in the CBPR literature despite the emphasis on equitable partnerships and shared ownership in the research process. METHOD: Informal interviews were conducted with 10 community partners to understand their perspectives on using and participating in research. RESULTS: Several recommendations for strengthening academic-community research partnerships emerged from the community partners' responses. They were: (a) conduct research that is useful to communities, with a focus on evidence-based practices and cost-benefit analyses; (b) involve community partners early in the development of research questions to ensure that local needs are addressed; (c) engage in frequent and open communication and maintain transparency about research goals and roles and responsibilities of each partner; (d) provide benefits to communities during the research process to promote professional development and build capacity; and (e) disseminate findings quickly, using outlets accessible to communities, and translate into strategies for practice. CONCLUSION: Although the recommendations require significant investments of time and resources by all partners, use of CBPR can contribute to increased development of innovative and sustainable violence prevention programs, services, and policies that are uniquely informed by scientific evidence and community expertise. By emphasizing partnerships with communities, CBPR helps to reduce the gap between research and practice and facilitates the inclusion of community strengths and resilience as valuable components of violence prevention and intervention. Language: en

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. 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. 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. 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.

Meaningful engagement and partnerships with people who use drugs are essential to conducting research that is relevant and impactful in supporting desired outcomes of drug consumption as well as reducing drug-related harms of overdose and COVID-19. Community-based participatory research is a key strategy for engaging communities in research that directly affects their lives. While there are growing descriptions of community-based participatory research with people who use drugs and identification of key principles for conducting research, there is a gap in relation to models and frameworks to guide research partnerships with people who use drugs. The purpose of this paper is to provide a framework for research partnerships between people who use drugs and academic researchers, collaboratively developed and implemented as part of an evaluation of a provincial prescribed safer supply initiative introduced during dual public health emergencies (overdose and COVID-19) in British Columbia, Canada. The framework shifts from having researchers choose among multiple models (advisory, partnership and employment) to incorporating multiple roles within an overall community-based participatory research approach. Advocacy by and for drug users was identified as a key role and reason for engaging in research. Overall, both academic researchers and Peer Research Associates benefited within this collaborative partnerships approach. Each offered their expertise, creating opportunities for omni-directional learning and enhancing the research. The shift from fixed models to flexible roles allows for a range of involvement that accommodates varying time, energy and resources. Facilitators of involvement include development of trust and partnering with networks of people who use drugs, equitable pay, a graduate-level research assistant dedicated to ongoing orientation and communication, technical supports as well as fluidity in roles and opportunities. Key challenges included working in geographically dispersed locations, maintaining contact and connection over the course of the project and ensuring ongoing sustainable but flexible employment.

In recent years, South African universities have been called upon to address socio-economic challenges through forms of engaged scholarship that integrate teaching, research, and community partnership. Using a case study approach, this paper explores how a community-oriented student organisation at the University of the Free State (UFS) in Bloemfontein approached the academic facilitator and students of an entrepreneurship module with a request to help them become a viable and sustainable social enterprise as a means to combat unemployment and improve the graduate employability of its members. This request necessitated the formation of a community-university partnership (CUP) that employed community-based participatory research (CBPR) and participatory action learning and action research (PALAR) to support the development of a social enterprise. The partnership formed part of an experiential learning initiative embedded within entrepreneurship education at UFS. Through the use of CBPR and PALAR, the student organisation was assisted in identifying its strengths and weaknesses, and an action plan, based on a social enterprise business model canvas (SEMC), was designed to help the organisation achieve its goals. Findings reveal that engaging students in CBPR and PALAR through their partnership with the student organisation facilitated deep, experiential learning. The paper also reveals how collaborative knowledge production can generate mutual benefits for students, communities, and the institution.

Community engagement in urban health research.

Background This integrative review examined the academic-community partnerships in quantitative health care studies using the community-based participatory research (CBPR) approach and targeting migrants. Methods The keywords were 'community based participatory or CBPR' AND 'immigrants or migrants.' All studies were written in English and published between January 2010 and December 2018. Results In the final sample (n = 26), studies used a variety of community partners including consumers and staff recruited from a variety of sites. The ethnicity between community partners and the target population was concordant in all studies reviewed. Yet, only a single study reported concordance between community partners and the migrant group (a group in which some hold a more privileged status than others) of the target population. Conclusions Official status such as citizenship is among the social parameters of intersectionality; yet the majority of CBPR studies examining migrant populations combined disparate migrant groups and used terms such as migrants, refugees and immigrants interchangeably. The CBPR approach is a valuable approach for health care studies as it strives to be culturally-informed so that study results on vulnerable populations are internally and externally validity. When concordance is not possible, researchers must describe the efforts that the partnership undertook to obtain and apply culturally-informed efforts. Key messages Optimally CBPR studies seek community partners who are concordant with the target population. When impossible, descriptions of culturally-informed efforts are needed. Migrants are a heterogeneous population. Migrants with less vulnerability may be ineffective representatives of the most vulnerable migrant groups.

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

ObjectiveWe compare 5 health informatics research projects that applied community-based participatory research (CBPR) approaches with the goal of extending existing CBPR principles to address issues specific to health informatics research.Materials and methodsWe conducted a cross-case analysis of 5 diverse case studies with 1 common element: integration of CBPR approaches into health informatics research. After reviewing publications and other case-related materials, all coauthors engaged in collaborative discussions focused on CBPR. Researchers mapped each case to an existing CBPR framework, examined each case individually for success factors and barriers, and identified common patterns across cases.ResultsBenefits of applying CBPR approaches to health informatics research across the cases included the following: developing more relevant research with wider impact, greater engagement with diverse populations, improved internal validity, more rapid translation of research into action, and the development of people. Challenges of applying CBPR to health informatics research included requirements to develop strong, sustainable academic-community partnerships and mismatches related to cultural and temporal factors. Several technology-related challenges, including needs to define ownership of technology outputs and to build technical capacity with community partners, also emerged from our analysis. Finally, we created several principles that extended an existing CBPR framework to specifically address health informatics research requirements.ConclusionsOur cross-case analysis yielded valuable insights regarding CBPR implementation in health informatics research and identified valuable lessons useful for future CBPR-based research. The benefits of applying CBPR approaches can be significant, particularly in engaging populations that are typically underserved by health care and in designing patient-facing technology.

Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners’ insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner’s voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious.

Health disparities among Native Americans persist despite efforts to translate evidence-based programs from research to practice. Few evidence-based, theory-driven prevention and management interventions have been successfully translated within Native American communities. The use of community-based participatory research (CBPR) has shown promise in this process. This article provides an overview of the use of CBPR with Native American communities and discusses the translation of the Stanford Chronic Disease Self-Management Program, using a CBPR approach, with an urban Native American community. This article highlights not only how the CBPR process facilitates the successful translation of the Stanford program but also how CBPR is used within this community to build community capacity.

Conventional health and social science research has contributed to advances in public well-being over the past century. Despite these advances, a significant gap exists in the health of Aboriginal children as compared to non-Aboriginal children in Canada. This has occurred, in part, as a result of the failure of conventional research to acknowledge the worldview of First Nations, Inuit, and Métis peoples, to fully take into account their experience of the social determinants of health (SDOH) and to address the intergenerational impact of colonization. In this article we review and discuss the social determinants of health (SDOH) with a specific focus on Aboriginal children and youth. Motivated by our experience in carrying out community based participatory research (CBPR) with children and families from First Nations and Métis communities in Alberta, Canada we review how use of CBPR) approach to research with Aboriginal children and communities can serve to enhance research results, resulting in greater relevance to community identified questions. We will address these issues in the context not only of good research practice but as an aspect of “wise practices” (Wesley-Esquimaux &amp; Calliou, 2010) occurring within an “ethical space of engagement” (Ermine, 2007). We conclude that CBPR allows for meaningful and equitable research partnerships to occur in an ethical space without reinforcing colonial processes of knowledge construction and translation while marginalizing Indigenous knowledge.

What is …?A Research Ethics Jeopardy™ Game to Help Community Partners Understand Human Subjects Protections and Their Importance Jaclyn Guerrero, PhD, Daniel Santiago Madrigal, PhD, and Meredith Minkler, PhD Abstract Although community partners in participatory research need to understand basic principles of research ethics and human subjects protections, few tools have been designed with these partners in mind. To assist in this process, and help engage youth community partners in learning this critical material, a game was developed based on the popular television program Jeopardy(TM). Piloted with a group of 18 Mexican-American adolescents as part of a broader community-based participatory research(CBPR) project, the game begins with small group study of infamous cases of research ethics violations (eg. the Tuskegee Syphilis Study) and of the human subjects protections that resulted. The participants then play the Jeopardy game in teams, responding to “What is …?” questions concerning the five infamous research studies and corresponding human subjects protections. Although observational findings revealed substantial learning and active engagement in the process, as well as strong retention of the material several months later, the tool requires further evaluation. Based on this pilot experience, however, we believe the Research Ethics Jeopardy™ Game offers promise in helping youth and other community partners in CBPR master critical information about human subjects protections and their importance in an accessible and lively manner. Keywords Community-based participatory research, ethics, health care, minors, community health research One of the most challenging—and important—parts of doing community-based participatory research (CBPR) with youth and other community partners involves adequately and meaningfully engaging them in understanding and participating in processes for the protection of human subjects. Mandates requiring such protections for participants in biomedical and behavioral research were instituted in the United States based in part on recommendations put forward in the 1978 Belmont Report.1 This report, a response to the egregious victimization of research participants in such infamous cases as the Tuskegee study of untreated syphilis in African American males2 emphasized the importance of respect for persons, justice and other ethical principles and their applications in research involving human participants. While time consuming and often cumbersome,3 human subjects processes are critical, detailing how researchers, including community members of research teams, will work to insure that those who take part in a given study do so willingly with a complete and informed understanding of the nature and potential risks and benefits of their participation. In CBPR, new tools have been designed to help researchers—and the Institutional Review Boards (IRBs) that evaluate their work—better understand and address the ethical challenges posed in this orientation to research.4,5 With few exceptions,4-6 however, such instruments have not been designed by or with community partners in mind—other than those who are being trained for participation as community representatives on IRBs. The dearth of such pedagogical tools is particularly problematic in CBPR and related research, in which community partners increasingly are being asked to undertake human subjects protection training (HSPT). Increasingly, community research partners must obtain [End Page 405] Collaborative Institutional Training Initiative (CITI) certification, developed by the National Institutes of Health (NIH) to ensure that all research partners have a clear understanding of the human subjects protections prior to their participation in such research. We applaud the growing recognition that community-based research partners, like their academically trained researcher counterparts, should have a strong familiarity with the reasons for and content of human subjects protections. A publically available PowerPoint™ presentation for use in Human Subjects Protections Training (HSPT) with community partners was developed by Professor Eugenia Eng at the University of North Carolina, Chapel Hill and has been used both in North America and globally.6 Similarly, many case studies and role plays have been developed to augment community partners’ learning about how and why to obtain informed consent, insure confidentiality and so forth.7,8 However, the exercises themselves tend not to be published. Finally, and while not specifically designed with community partners in mind, a comprehensive study guide now is available from the Presidential Commission for the Study of Bioethical Issues (2012). The guide looks in detail at a now much reviled...

Community Policy Brief S. Megan Berthold, PhD, LCSW, Sengly Kong, PhD, Theanvy Kuoch, MA, LPC, Elizabeth A. Schilling, PhD, Rasy An, MA, Mary Blatz, MA, Rorng Sorn, MS, Sivheng Ung, BA, Yorn Yan, MBA, Mary Scully, APRN, Seiya Fukuda, MSW, MA, and Lorin Mordecai, MSW, LSW COMMUNITY POLICY BRIEF What Is the Purpose of this Study? • This study engaged Cambodian-led nonprofit organizations in six regions of the United States in a community–university partnership that used a community-based participatory research (CBPR) approach to: 1 further develop the Cambodian American community's capacity to design and conduct health research meaningful to their community via a CBPR approach; 2 train and deploy bilingual community health workers to gather health-related data from their communities using mobile technology; and 3 measure the feasibility and effectiveness of our efforts. What Is the Problem? • Cambodians who came to the United States as refugees have experienced high rates of trauma during the Khmer Rouge genocide and in refugee camps on the Thai–Cambodian border. • Those Cambodians who were adolescents in the United States have faced significant community violence and racial discrimination, and these experiences are associated with posttraumatic stress disorder and depression. • Cambodian Americans have higher rates of persistent health and mental health problems compared to the general U.S. population; are more likely to experience posttraumatic stress disorders, major depressive disorder, and co-occurring post-traumatic stress disorder and depression; and are also at greater risk for hypertension, diabetes, and cardiovascular disease. • Limited systematic study of community health and a relatively modest community capacity for collecting data contribute to these disparities. What Are the Findings? • Community health workers, leaders, and community members reported largely positive experiences with the iPads and spoken Khmer format of the community health survey, despite inconsistent Internet connectivity. • The institutional capacity of Cambodian American community-based organizations to collect health-related data in their own communities was strengthened. • Our efforts proved to be both feasible and effective. [End Page 107] Who Should Care Most? • Community-based organizations providing services to Cambodian communities or other vulnerable populations. • Cambodian community members living in the United States as well as other trauma survivors or refugees. • Health and mental health service providers. • Researchers studying the feasibility of using mobile technology in CBPR health studies. Recommendations for Action • CBPR approaches that use technology should continue to be used to research health disparities in Cambodian American and other communities. • Community engagement in this research is essential. • Trained and experienced community health workers and community leaders are an asset to their communities and uniquely placed to protect the rights and well-being of their community members. [End Page 108] S. Megan Berthold University of Connecticut School of Social Work Sengly Kong Khmer Health Advocates Theanvy Kuoch Khmer Health Advocates Elizabeth A. Schilling Center for Public Health and Health Policy, InCHIP, UConn Health Rasy An Cambodian Mutual Assistance Association of Greater Lowell Mary Blatz Mount Carmel Cambodian Center Rorng Sorn Cambodian Association of Greater Philadelphia Sivheng Ung Cambodian-American Community of Oregon Yorn Yan United Cambodian Association of Minnesota Mary Scully Khmer Health Advocates Seiya Fukuda Health Services Research Division, Bedford Veterans Affairs Medical Center Lorin Mordecai University of Connecticut School of Social Work Copyright © 2017 Johns Hopkins University Press

University of California—Los Angeles, School of Nursing, LosAngeles, California, USALast month this column addressed general guidelines forproviding culturally and linguistically competent mental healthcare to the diverse ethnic and racial groups living in UScommunities. We discussed guidelines for providing culturallycompetent mental health care at individual, organizational,and societal levels. The column ended by noting a promisingavenue for providing culturally competent care that makes useof a community-based participatory research (CBPR) approach(Stacciarini, 2009). In a review of CBPR publications involvingLatinos and depression, Stacciarini (2009) observed that fewresearchers have used a CBPR approach when intervening withdepressionamongLatinos.Sheconcludedthatthereisasubstan-tial need to move toward community-academic collaborationsto address depression in underserved minority populations.Using the CBPR approach, health and social service organiza-tions partner with academic institutions to involve communitymembers in tailoring their own mental health care that will bestmeet their needs and conform to their own explanatory models.Community-partnered participatory research (CPPR) is avariant of CBPR thatemphasizes equal participation and power-sharingbycommunityandacademicpartnersinallphasesoftheresearch process (Jones, 2009; Jones & Wells, 2007). CPPR iscurrently under study in two large areas of Los Angeles County(South Los Angeles and Central Los Angeles) with vulnera-ble populations and communities of color (Community Partnersin Care [CPIC], 2009). The study, known as Community Part-ners in Care, asks whether agencies and communities workingtogether through a community engagement process is a betterway of improving access to quality depression care services and